Talk:Myalgic encephalomyelitis/chronic fatigue syndrome: Difference between revisions

Archiving

I've archived the page, it was 260+K; since it seems to be an important archive, the new page has this highlighted. I've also moved the reflist to the top - there's no reason on a talk page to keep it at the bottom, and it interferes with the addition of new threads. WLU (t) (c) ^{(rules - simple rules)} 15:47, 11 September 2008 (UTC)

Some of the talkpage was archived prematurely, the last post was only several days old and I was about to add a comment there. Next time, please leave the last few subsections in the active talkpage. Thanks. - Tekaphor (TALK) 10:27, 12 September 2008 (UTC)

Sure, but it's hard to do/know when the page is a quarter of a million characters. I think the last section was very, very long too - I was going to leave it, but it'd keep a really long section and kinda defeat the purpose of archiving. Please feel free to pull out the full section, or re-start a new one. WLU (t) (c) ^{(rules - simple rules)} 10:44, 12 September 2008 (UTC)

Thanks for the suggestion; I understand that it can be difficult to pick a cutoff point. I'm just going to continue it on the relevant subpage (with a URL to the former subsection) since that is currently active. - Tekaphor (TALK) 04:16, 13 September 2008 (UTC)

Changes

This page should be downgraded to C-Class (or lower) on the quality assessment scale. Far too many significant expert opinions have been deleted -- despite multiple PubMed citations, for example: hypoperfusion in the brain found in multiple SPECT studies. Further more the editors appear to believe that anything not in the Lancet or BMJ should not be cited. But they have been inconsistent because citations challenging CBT in the Lancet have been deleted. Issues found acceptable to publish in the Lancet do not appear to be acceptable to these editors. There is no effort to tolerate diverge expert opinion etc Lassesen (talk) 07:45, 5 January 2009 (UTC)

I've had a go at some re-writing, mostly to remove the ME/CFS but also some significant re-wording. I've re-written and moved about much of the lead, but one substantial change was to place greater prominence on the naming controversy by putting it in the first paragraph, second sentence. Having a series of splits and slashes is a poor way of dealing with the controversy, putting it prominently in the article in a well written, well referenced discussion brings it to the attention of the reader right away. Until it's decided in the real world, no-one will be happy with the terminology on wikipedia but that's not a reason to have a bunch of slashes. CFS should be used throughout, and is or will be soon. In addition, I've moved most of the pages away from ME/CFS [whatever] to simply [whatever] of CFS. The slashes can result in the creation of a bunch of sub-pages, is confusing, is nearly impossible to type in exactly, and is a poor compromise. Wikipedia has for now settled on CFS rather than ME, so that should be used throughout. Until it's decided and it's possible to verify it's a single condition, multiple conditions, or only one name is used world-wide, CFS is what's there. WLU (t) (c) ^{(rules - simple rules)} 17:07, 11 September 2008 (UTC)

Discussion of names happening here (again?). Please centralize. WLU (t) (c) ^{(rules - simple rules)} 18:09, 11 September 2008 (UTC)

I'm sorry, but what is the basis for your statement that the term ME should not be used? Where did Wikipedia settle this, or how did you become the single judge of that? According to WHO and CDC, ME is a different diagnosis than CFS. Guido den Broeder (talk, visit) 19:14, 11 September 2008 (UTC)

I agree completely with Guido. Who appointed you The Decider, WLU?

On your very own talk page, you demand of others:

Don't expect a lengthy reply if you don't demonstrate having read the policies and guidelines I point to.

Well, I am firmly pointing you to this important one at the top of this talk page:

Please read this page and discuss substantial changes here before making them.

What part of 'before' don't you understand?

Revert your edits and post them on the talk page to allow a proper discussion of them. Until then don't expect a lengthy reply from me. Bricker (talk) 19:35, 11 September 2008 (UTC)

Bricker - please review WP:CFORK, WP:NAME, and WP:MEDMOS. The line you refer to is not actually a guideline or a policy, it's just a template, and I'll offer WP:BOLD as my defence. We have to edit according to policy and guidelines, not personal preferences. The slashings that were used made the articles more difficult to search for, placed undue weight on one perspective (i.e. use of the ME terminology seems to represent a much smaller, less prominent viewpoint than CFS when examined in the relevant sources) and simply throwing the terms into the page names doesn't do a bit to illustrate why the names should be there. The pages were unwikified and placed too little prominence on the controversies. I specifically adjusted the lead so very nearly the first thing you read is that ME is one of several contested terms for CFS. The page needs careful editing, not partisan names. Unsourced assertions and very strong opinions are not good ways to edit. I lack expertise on CFS, but I do know wikipedia. There is a place for the ME/CFS naming debate, it is a large part of the history, but it should be in the main page, not the talk pages or titles.

Guido - according to pubmed and a whole whack of google hits, CFS is appropriate per WP:NAME. I don't recall seeing any sources saying they're different but I will review them if you link, here or on my talk page. WLU (t) (c) ^{(rules - simple rules)} 19:57, 11 September 2008 (UTC)

Your perception of undue weight is incorrect. The weight of ME has increased over the last five years, due to important biomedical research results, which lead to the IACFS/ME including ME in their name. This can all be found in the proceedings of the IACFS/ME conferences. Google hits or pubmed hits would only say something if the terms were interchangeable, but they are not. Since there is far more CFS research than ME research, there are also more hits. What is surprising is that the ratio is much smaller than the research ratio. Guido den Broeder (talk, visit) 20:39, 11 September 2008 (UTC)

(unindent) As for published literature, see a.o.

• "Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME)", Westcare, 1994
• Lavrich C, Kenney KK, Lapp C, Herd J, Kahn D, Levine S, Klimas NG, Jason LA, "Recommendations of the Name Change Workgroup Presented to DHSS CFS Advisory Committee", September 2003
• Elke Van Hoof & Kenny De Meirleir, "Chronic Fatigue Syndrome and Myalgic Encephalomyletis: Are Both Conditions on the Same Continuum?", North American Journal of Psychology, 2005, Vol. 7, No. 2, 189-204

We've gone through this several times already on this talk. Guido den Broeder (talk, visit) 21:20, 11 September 2008 (UTC)

I remember from last time that you also provided unlinked references. I'll try to track them down when I have the time, but it would be much quicker, and more convincing, if you could link directly. Conferences are not near so reliable as peer-reviewed journal articles, which have the weight of the academy behind them while conference presentations are much more likely to be idiosyncratic to the researcher. If as you say the ME diagnosis is so prominent, it should be easy to demonstrate with multiple sources from the previous five years rather than one from '05, '03 and '94. Again, google scholar doesn't support this interpretation - 1.2K published in 2008 for CFS, 86 for ME. WLU (t) (c) ^{(rules - simple rules)} 23:12, 11 September 2008 (UTC)

Results for past 5 years - 13.5K for CFS, 756 for ME. 10K CFS from '98-'03, 651 for ME for the same time. 4.6K for '93-98 for CFS, 441 for same period for ME. As a proportion, for 2003-8 that's 13500/756 CFS to ME (17.8 to 1), 1998-03 it's 10K/651 (15 to 1) and 1993-8 it's 4600/441 (10 to 1). For the current year, 1200/86, which is 14 to one. That looks a lot like the range is increasing over time, to give more weight to CFS as time goes on. The information doesn't seem to support your idea. WLU (t) (c) ^{(rules - simple rules)} 23:24, 11 September 2008 (UTC)

You are looking at irrelevant data. Researchers simply go where the money is, and that is decided by politics. Relevant are only publications about classifications and/or definitions. It will take at least five years before that has an effect, if any, on fund assignment. Guido den Broeder (talk, visit) 23:46, 11 September 2008 (UTC)

You've just hit on WP:REDFLAG and a violation of WP:V - if there will be no effect for the next five years, we should not be reporting it on wikipedia. We report verfiability, not truth. You've essentially just given up any chance of your argument having any weight for five years. WLU (t) (c) ^{(rules - simple rules)} 23:59, 11 September 2008 (UTC)

Nonsense. I did not say that there was no effect. The effect is very clear and visible. It is only the effect on funding that has such a significant delay. Guido den Broeder (talk, visit) 00:09, 12 September 2008 (UTC)

WLU, when you say, "Wikipedia has for now settled on CFS rather than ME, so that should be used throughout.", what do you mean by "Wikipedia"? Do you mean editor consensus, or WP guidelines, or the few administrators who have decided to put their foot down on the issue? Also, if the subarticles were "ME/CFS", doesn't this suggest what had already been settled upon? Many researchers do assume that CFS and ME are the same, but I'd like to see the hard evidence which concludes that they actually are the same, the overwhelming research which properly compares the different criteria and clearly finds that they are indeed synonymous. Instead, we have the CDC who gave us the CFS legacy, resisting the notion that CFS and ME are the same.

I can understand wanting to adopt a naming standard and avoiding slashes, but I think the decisions at Wikipedia regarding the ME/CFS naming issue should be based on more than a PubMed search impression of researchers opinions from how they phrase the illness/disease, rather than actual scientific evidence for why CFS and ME are synonymous. It seems to me that some other editors here either want this article named ME/CFS or want separate articles for both CFS and ME (which would mean moving some of the information across). I think it has been claimed here before that the latter option isn't justified because CFS supposedly takes over from ME. However, if this argument is used, then we also should delete the "neurasthenia" entry at Wikipedia simply because; (1) CFS is supposed to be the modern equivalent of neurasthenia like it is supposed to be for ME, (2) historically, neurasthenia was eventually made redundant by being split up into other psychiatric diagnoses.

Personally, I don't have a solid opinion on the naming issue because; "CFS" is inadequate but is most commonly used, and brain inflammation isn't taken into account when diagnosing CFS so the term ME is probably also inaccurate for many patients. However, there doesn't seem to be much modern research using ME criteria, and let's not pretend that using different criteria will lead to equivalent results. Sweeping everything ME under the CFS rug all seems a little too convenient.

_Tekaphor (TALK) 09:26, 12 September 2008 (UTC)

Consensus and naming guidelines. The main page is called CFS. The attempts to create a ME page was redirected. There doesn't seem to be sufficient evidence that ME and CFS are considered separate diagnoses in the majority of the scholarly community (an undue weight issue). Part of the issue is lack of familiarity - single purpose accounts and those with low familiarity with wikipedia and it's policies tend to not be familiar with or realize the implications of policies, while admins who are promoted based on their knowledge of and ability to interpret policy, do tend to carry more weight than low edit-count accounts (though in part this is because the less familiar are less able to interpret policies and base arguments on them). It's also an issue of sources, with most sources I've seen using the terms interchangeably. I'd like to see hard evidence either way as well, but it doesn't seem to exist otherwise the naming convention would be settled. You've read the discussion here, so you're pretty much aware of the status of the current debate and the evidence supporting the scholarly community treating then interchangeably. That is why I settled on CFS only. I attempted to reflect the controversies of this very prominently in the lead as well. Neurasthenia is a different page with its own issues, so if you'd like to have it deleted, the policies are here.

With your final paragraph, you hit the nail on the head. CFS may be inadequate; more importantly it is considered inadequate by a significant group, which I can verify and have tried to reflect in the lead. But since CFS is "commonly used", per WP:NAME, that is what we chose. The use of slashes in a page name was also a very, very bad idea for software, as it resulted in a series of sub-pages which makes linking, formatting, archiving and other software tricks difficult as well as being blatantly undue weight in my mind. If you want my opinion as a wikipedian with some experience, the best thing to do is either a) find medically reliable sources, and a lot of them, to demonstrate why the name chosen is a poor one, or b) accept that CFS is the kosher name on wikipedia and devote your energies to expanding those sections on wikipedia that illustrate the medical and social issues regarding the ME/CFS naming problems. Spending all this time on talk pages takes time away from actual, and important editing of the main page. There is no issue with highlighting the problems and objections to CFS on the main page with the weight given by the scholarly and medical community. In fact, it should be reflected on the page and in the lead. WLU (t) (c) ^{(rules - simple rules)} 11:05, 12 September 2008 (UTC)

Your statement that CFS is commonly used ove ME is, however, incorrect, and (strangely) more importantly to Wikipedia, not verified. Yes, it is used more often than ME in contemporary medical literature. It is, however, not used over ME. You perceive it as a naming controversy, but it isn't. There is a naming controversy regarding the term CFS, and perhaps another regarding the term ME. But the discussion ME or CFS is a diagnosis controversy (see the references I gave). The two are diagnosed in vastly different ways. The fact that the diagnosis CFS is more often researched than the diagnosis ME, does in Wikipedia policy not imply that the diagnosis and therefore the name ME should not be used. The diagnosis is mentioned often enough in medical literature, and therefore notable enough to use in Wikipedia. Guido den Broeder (talk, visit) 12:36, 12 September 2008 (UTC)

Notable enough to mention in Wikipedia not use every time you say CFS. CFS is right now the common term in media and in literature and so the term to use on Wikipedia like I said here. It doesn't matter what some people think is becoming more used or what gets more used in five years, when that happens it will get changed. RetroS1mone talk 13:19, 12 September 2008 (UTC)

We are not an extension of pubmed. Whether it is the most common diagnosis in use, apart from Pubmed hits, remains to be seen. It differs greatly between geographical regions; e.g. in the Netherlands ME may still be used more often. What is important here, however, is that information relevant to ME but not CFS can find a place. It often can't in articles on CFS only. We solved that be using the compound term ME/CFS in all subarticles, but I would be perfectly happy with twice as many articles if that is what it takes. Guido den Broeder (talk, visit) 13:41, 12 September 2008 (UTC)

In a way we very much are an extension of pubmed. We use what the majority uses, we reflect the mainstream community. You have not shown any evidence I can recall that there is a large distinction made by the mainstream scholarly community that ME and CFS are different. In five years we can change it, but right now it's CFS and you are wasting many people's time. WLU (t) (c) ^{(rules - simple rules)} 14:14, 12 September 2008 (UTC)

I won't respond anymore until you come up with a reliable source that supports your claim that they are synonymous and CFS should be used over ME. Guido den Broeder (talk, visit) 15:08, 12 September 2008 (UTC)

(unindent) WLU, try to work with the regular contributors of these articles, not against them. Please refrain from making other major changes to these articles until the current dispute is resolved. Try to resolve the dispute, rather than to enlarge it. Guido den Broeder (talk, visit) 15:22, 12 September 2008 (UTC)

Neuropsychiatric?

Guido removed neuropsychiatric from the nomenclature. I think it should be re-added, as it is an important factor. --Sciencewatcher (talk) 14:11, 12 September 2008 (UTC)

The article does not say so. Leads should reflect what is in the article. Guido den Broeder (talk, visit) 15:06, 12 September 2008 (UTC)

It says quite a lot about it in the etiology and controversies sections. --Sciencewatcher (talk) 16:09, 12 September 2008 (UTC)

Nope, not a single word. Guido den Broeder (talk, visit) 16:18, 12 September 2008 (UTC)

There is not a single piece of research that treats CFS as a purely psychogenic condition? Then why do patients get all angry about it? If a significant portion of the research and/or medical community believe CFS is a psychiatric condition, this should be mentioned along with the many, many people who disagree. The point is to describe the controversy, not obscure the side you don't like. All significant viewpoints should be mentioned. Sciencewatcher - do you have a source that explicitly states the authors believe CFS is a psychological or neurological condition? Is it peer-reviewed, published in a mainstream, high-prominence journal? Psychological and neurological are also two different things - one means it can be fixed by adjusting the mind, one means it can be fixed by treating the nerves. Quite different. WLU (t) (c) ^{(rules - simple rules)} 19:24, 12 September 2008 (UTC)

"There is not a single piece of research that treats CFS as a purely psychogenic condition?"

I guess you must have missed the whole "Maternal neuroticism in CFS", "ME is a belief, a belief one has ME", "you're not in bed because you're sick, you're sick because you're in bed", and educational CBT video seminars for doctors from respected (laughing) psychiatric researchers that insist that CBT can retrain the "fatigue" sufferer "misattributions", "faulty beliefs", "learned helplessness" etc and together with graded exercise (because the pathological exertion limitation is just a "myth" you see) effect a cure - or not a cure, depending on the audience. Entire psychology web pages are devoted to explaining away signs and symptoms as being due to deconditioning. An explained-away, behavioural condition is a psychogenic poor health state, nothing more, and PMID 7901572 reflects this view.

I guess you're also one of these people who "doesn't get" the whole psychosomatic = psychogenic reality, instead preferring the postmodernist twaddle of "all diseases are somewhat psychosomatic" and that you probably believe the "biopsychosocial model" actually exists and is simultaneously specific to conditions like alcoholism and applicable to disease as a whole. Well at least you'll have astroturf "ME charities" like AfME and AYME (the only ones who supported the NICE guidelines) on your side.

I'm hoping for your own sake that your sneering at sufferers' "anger" was written before you read and messed up the Sophia Mirza article by editing out so-called "coathanging" background info that explained the Mirza case was neither an "abberation" nor the result of commonplace investigations which are two very commonplace myths.

The question is not why are sufferers angry, it's surely why scientific "CBT/GET" fraud and enormous socio-medical scandal elicits so little concern. If you live in the UK it's your blood transfusion that may be coming from a non/misdiagnosed pwME and your taxes that are being poured down the drain of such efforts as the above, and the only UK biomedical research is from independant researchers while the government pushes benefits reforming agenda-raddled CBT reification.

Do you do any volunteering for a severely affected, perhaps bedbound sufferer in your locality, or do leave them to the tender minsitrations of the likes of Alice Green or the above quotes? Maybe if you saw how people are neglected you might think differently, then again you may just see your own pro-CBT/GET/psychosocial prejudices. 62.69.36.100 (talk) 05:29, 21 September 2008 (UTC)

Angry about what? Patients don't care whether their disease is one or the other, it's the doctors and psychiatrists that can't stand each other. Guido den Broeder (talk, visit) 19:31, 12 September 2008 (UTC)

Well I'd care if my biomedical disease was being treated as a psychiatric condition as much as I'd care if I had a mental illness and I was only being offered antibiotics. CBT/GET has put mild sufferers in wheelchairs and in bed which is one of the reasons people care. People care because daily survival tasks keep making them sicker with little or no "symptomatic" treatment given yet they get repeatdedly told they're effectively being more lazy than they need to be, while ME/CFS is the butt of an extended media joke. Anger is not neccessarily pathologic and can be the result of injustice, mistreatment, social exclusion, denial. But I do agree that the main dispute is between professionals e.g. Dr Pheby and Prof Chalder, Dr Enlander and Dr White, Prof Cheney and Dr Sharpe, Prof Hooper and Prof Wessely, Dr Hyde and Prof Barsky and so on. The pro-pathology vs. pro psychosocial camps will never agree because the "middle ground" is still psychiatric (psychosomatic) ground. WLU needs to remember professionals have walked out of and refused to sign up to various guidelines as well (eg. CMO report in the UK). 62.69.36.100 (talk) 05:29, 21 September 2008 (UTC)

Perhaps Guido meant that the word "neuropsychiatric" doesn't appear anywhere, and he is correct. So I propose adding the word "psychiatric", which is discussed in the article. --Sciencewatcher (talk) 19:43, 12 September 2008 (UTC)

(unindent) What the article says about that is the following:

• patients report critical reductions in levels of physical activity and are as impaired as persons whose fatigue can be explained by another medical or a psychiatric condition
• psychiatric disease was a widely regarded exclusion for M.E. diagnosis.

Nothing more, i.e., rather the opposite of what you claim. Guido den Broeder (talk, visit) 19:50, 12 September 2008 (UTC)

But that doesn't negate the fact that there are proposed psychiatric etiologies for CFS, and many studies have confirmed that psychiatric factors are significant in causing the illness. It looks like you are just pov pushing in order to remove any reference to psychiatric factors. --Sciencewatcher (talk) 19:56, 12 September 2008 (UTC)

I have not removed a reference to psychiatric factors in this article, thanks. There was none. Guido den Broeder (talk, visit) 20:01, 12 September 2008 (UTC)

You've just done it there now, and I've put it back in. --Sciencewatcher (talk) 21:58, 12 September 2008 (UTC)

That is not a reference, thanks. Tagged for npov and dubious. Guido den Broeder (talk, visit) 22:03, 12 September 2008 (UTC)

Can we remove the pov and dubious tags that Guido added? --Sciencewatcher (talk) 14:31, 13 September 2008 (UTC)

Sure. As soon as you stop editwarring and allow us to correct the text. Guido den Broeder (talk, visit) 17:24, 13 September 2008 (UTC)

Please stop falsely accusing me of editwarring, and explain exactly what is wrong with the text. --Sciencewatcher (talk) 18:52, 13 September 2008 (UTC)

It's an unsubstantiated claim, one and several like it that you have put repeatedly in numerous articles during the course of over a year. The archives of this talk page are full of objections to this behaviour. Each time someone removes it, you wait until things slow down, some users leave, and then you put it back in. How is that not editwarring? Guido den Broeder (talk, visit) 19:56, 13 September 2008 (UTC)

Above, WLU asked you to provide a source; others have asked the same. I will not respond any more until you come up with one. Guido den Broeder (talk, visit) 20:06, 13 September 2008 (UTC)

You can try PMID 7901572 to start, and there are a whole lot more - just have a look through the article. And as far as I can tell, the word "neuropsychiatric" was added on the 30 April 2007 and hasn't been removed or re-added between then and now. So unless you have evidence, please withdraw your claim that I have been "editwarring" over this. --Sciencewatcher (talk) 21:30, 13 September 2008 (UTC)

PMID 7901572 is just one doctors personal opinion and sour grapes over the WHO classification. 62.69.36.100 (talk) 05:29, 21 September 2008 (UTC)

There are indeed psychiatric hypotheses for CFS, although perhaps difficult to pin down a singular coherent model. However, the wording "Authorities on the illness look upon the condition as ..." may need some clarification. I'm guessing that Guido has a problem with the claim that "authorities" view CFS as a psychiatric illness, which authorities exactly and how accurate is such a classification. - Tekaphor (TALK) 06:45, 14 September 2008 (UTC)

Yes. There are plenty of other hypotheses, e.g. pollution, candida and disco frequenting, but we shouldn't create the impression that they are mainstream hypotheses. Guido den Broeder (talk, visit) 07:01, 14 September 2008 (UTC)

When people like Simon Wessely have a view that it is psychiatric, that is mainstream. I don't see any mainstream views that candida or going to the disco causes CFS. You appear to be treating psychiatric with a different set of rules to the other probable causes. --Sciencewatcher (talk) 15:10, 14 September 2008 (UTC)

This lies at the heart of the problem. If there wasn't such a stigma, we wouldn't be having this discussion. Judging from the NICE guideline, the psychiatric paradigm is no less mainstream than all the other fancy theories that claim mitochondrial failure, L-carnitine defiency and that old nugget neuroimmunoendocrinology. JFW | T@lk 06:28, 15 September 2008 (UTC)

It's nothing to do with stigma of mental illness, get your facts right. ME is far more stigmatised than depression (I've never met a doctor who maintained that depression "doesn't exist", have you?) and if sufferers had stigma as their motive they could easily lessen it by acceding to a politically correct psychosocial model or terminology. 62.69.36.100 (talk) 05:29, 21 September 2008 (UTC)

Wessely uses a deviant definition of CFS that is totally different from all other definitons. He opposes the full weight of WHO, CDC, IACFS/ME, research foundations and patient organizations. I don't see how this can be considered a mainstream view, except perhaps locally in the UK and the Netherlands. Guido den Broeder (talk, visit) 07:41, 15 September 2008 (UTC)

Wessely has said people with abnormal TTT would be excluded from his clinic, which echoes PD White's rejection of TTT along with misrepresenting delayed postural orthostatic tachycardia as mere "postural hypotension". Funny, because at the same time the claim that deconditioning is the cause of NMH is popular among psychs -- you'd think in which case they may actually want to use TTT to prove it and as an objective measure of the "success" of CBT/GET (far more objective than a context-free "walking distance" test).62.69.36.100 (talk) 05:29, 21 September 2008 (UTC)

Guido, psychiatric hypotheses do appear to be mainstream as a whole; of course, this doesn't mean majority; significant minorities can still be part of the mainstream (think of music genres). As I indicated earlier, it's hard to pin down a singular hypothesis that overall represent psychiatric hypotheses; different papers propose various hypotheses or even just factors to consider (eg, psychological maladaptation, biopsychiatric stress-disorder, malingering, factitious disorder, hypochondriasis, interoception, etc). Wessely's crew aren't the only ones. Some of these may indeed be as ridiculous as "disco frequenting" (let's not forget the classic "excessive fantasy and masturbation" from Freud's era of "actual neurosis"), however, regardless of the accuracy of these claims, I don't think it can be reasonably denied that these represent a significant proportion of CFS related hypotheses coming from professionals. - Tekaphor (TALK) 08:58, 15 September 2008 (UTC)

There are more notable psychiatric hypotheses, that is true, but they relate to risk, course and management, rather than the cause or nature of CFS. As far as I know, only the Oxford group opposes the WHO classification. Now, the text currently says 'authorities'. Psychiatric causes are not considered by any authority, but they can be mentioned as a minority path. Stress as a contributing factor is undisputed afaik and can and should be mentioned as such, but not a claim that it is considered as a cause. Does this sound reasonable? Guido den Broeder (talk, visit) 09:23, 15 September 2008 (UTC)

I don't know of any "authorities" claiming the cause to be cardiovascular or metabolic either. Perhaps it would be better to change the word "authorities" to "researchers" (or some word covering researchers and doctors). --Sciencewatcher (talk) 15:01, 15 September 2008 (UTC)

That would be the CDC (a.o. Reeves) and the IACFS/ME (a.o. 8th conference of January 2007), for starters. Guido den Broeder (talk, visit) 16:33, 15 September 2008 (UTC)

What was actually said? --Sciencewatcher (talk) 23:43, 15 September 2008 (UTC)

non RS

Lets say it again, the book by Hyde is published by Hydes publishing company nightingale, it is the only book published by his company. It is a selfpub, it is not a reliable source. There is a reason for Wikipedia policy about selfpub, selfpub stuff does not get fact checked the way it should get in a commercial press. One place it is allowed, Hyde's book can be used in a article about Hyde, to show what Hyde says. In CFS article it is not a rs. I took it out, again, lets keep it out. thanks RetroS1mone talk 02:57, 15 September 2008 (UTC)

I have previously cast my doubt on the reliability of this self-published tract. It turns out, however, that Malcolm Hooper's article in J Clin Pathol was not actually retracted (it was just so rubbish that it took them months to yield to representations to keep it on the website). Hooper cites Hyde repeatedly. As such, Hooper's review may be used as a source if Hyde's opinion must be included. But it remains a piece of sheer speculation that alludes to numerous undefined concepts and untestable premises. JFW | T@lk 06:25, 15 September 2008 (UTC)

It is not 'Hyde's book'. Hyde is the editor. The book mainly consists of the proceedings of the 1990 IACFS/ME conference, and therefore gives an almost full overview of all the existing knowledge on ME at the time. It contains some 75 articles, only a few of them with Hyde as (co-)author. It is considered the 'Bible of ME' by researchers in the field and has been quoted so often in literature, that it doesn't matter who published it (the foundation lead by Hyde, not Hyde himself btw). We don't throw the ICD10 out because it was self-published by the WHO, do we? Guido den Broeder (talk, visit) 07:47, 15 September 2008 (UTC)

Anyway, you should try and reach consensus first before making such major edits that you know beforehand will be opposed. Guido den Broeder (talk, visit) 07:55, 15 September 2008 (UTC)

1990 seems rather dated - there are no better sources to use than this? The argument about the ICD does not apply - it's not self-published by a person as Hyde's book seems to be. ICD is published by the WHO, an organization. It's also presumably vetted by experts (i.e. peer reviewed), which Hyde's book would be lacking as a self-published source. Anyone know how the terms and criteria are decided on in the ICD? WLU (t) (c) ^{(rules - simple rules)} 17:33, 15 September 2008 (UTC)

The POV expressed in that book is so marginal that it clearly was not feasible to have it published by one of the numerous scientific publishers. I cannot understand why Guido has now reverted this. In most instances, Hyde's book had no added value as a reference. Perhaps some more discussion should be had, perhaps a small straw poll. What happened to all those kind editors who were so in favour of forking this article? I personally oppose Hyde as a reliable source, and am interested to know others' views. If there is support for its removal, will Guido then yield to consensus and agree to remove it? JFW | T@lk 19:13, 15 September 2008 (UTC)

Considering its use, it's somewhat of an absurd discussion to have - it's being used to justify alternative names for CFS. I think I've seen half-a-dozen websites that post these synonyms. The current references that accompanies Hyde [1] is an adequate citation for most of that particular text anyway, and it seems to be quite reputable and reliable. The only other requirement would be for a citation of CFIDS. This would work perhaps. Take it out, replace with unquestionably reliable, end discussion. Failing that, bring it up at WP:RSN. WLU (t) (c) ^{(rules - simple rules)} 19:26, 15 September 2008 (UTC)

A self published source is when the source gets published by vanity press or something similar. Hyde is the editor. Hyde has a foundation. The foundation has a press. The press published one book. Hmm. That's vanity press, that's a book that may be couldn't get published some where else, that's may be a "press" that got set up just to publish this one book and its infectious ME hypothesis. The reason we have this selfpub thing is, selfpub books don't get fact checked the way their supposed to by commercial press. The buddha himself can have a article in this book, it does not matter, it is a sefl pub and it does not belong at Wikipedia. RetroS1mone talk 22:53, 15 September 2008 (UTC)

Note discussion - Wikipedia:Reliable_sources/Noticeboard#Nightingale_Research_Foundation. WLU (t) (c) ^{(rules - simple rules)} 01:28, 16 September 2008 (UTC)

I don't own the book but have read excerpts from it and know a bit about it. I think there's some serious misrepresentation here. Yes, it's published by The Nightingale Foundation, but it's definitely "fact checked", because the contributions are research papers that have previously been published and presented at the 1990 conference (AFAIK the first international research conference on ME/CFS which seems pretty significant, no?) summarising the "state of the art" of the time, and although it may sound dated the specific information still stands. Speculating on why it was published in the way it was is just that - speculation. It summaries the work of 80 specialists. So dismissing it because it's "self-published" is disengenious as the reviewed material is itself not self-published but referenced. It is the only extensive review of ME literature of the period AFIAK and is not "written by Hyde" as RtroS1mone keeps suggesting (with barely concealed contempt). It's certainly very notable for an encyclopedia article on ME & CFS. But don't take my word for it, read some of the damn thing. This is just censoring knowledge, which is a pretty anti-encyclopedic thing to do.—Preceding unsigned comment added by 62.69.37.58 (talk)

JFW - that's quite a mean allegation, what evidence do you have that Hooper's paper was supposedly going to be retracted because of quality? If that ws the case why would they have published it in the first place and why would they still be happy to have it there now? Or are you saying the journal's peer review process is kaput? You make no sense. —Preceding unsigned comment added by 62.69.37.58 (talk) 07:09, 24 October 2008 (UTC)

ME or CFS

Is ME the same thing as CFS? I've got a variety of 2008 references that explicitly state it is. Here they are:

Link	Journal	Relevant quote
[2] (pdf)	Journal of Psychosomatic Research	"Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)"
[3]	Alternative and Complementary Therapies	"Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)"
[4]	Expert Review of Neurotherapeutics	"Similar disorders have been described for at least 200 years and have been variously named neurasthenia, myalgic encephalomyelitis"
[5]	Medical Hypotheses	"...similar to those described in a group of chronic multisystem illnesses including chronic fatigue syndrome (CFS) (also known as myalgic encephalomyelitis..."
[6] (pdf)	Psychosomatic Medicine	"ME is an alternative term for CFS that is often preferred by patient groups within the UK."
[7]	Medical Hypotheses	"Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME)"
[8]	Acta Psychiatrica Scandinavica	"Chronic fatigue syndrome (CFS), sometimes also known as myalgic encephalomyelitis (ME)"
[9]	Clinical Psychology Review	"The term myalgic encephalomyelitis is sometimes used to describe the same disorder as chronic fatigue syndrome"
[10] (pdf)	Counselling and Psychotherapy Research	"Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome"
[11]	The Pharmaceutical journal	"...with some patients going on to develop chronic fatigue syndrome (also known as myalgic encephalomyelitis)"
Other sources - not 2008 or not journals
[12]	CDC glossary page	"myalgic encephalomyelitis: A synonym for chronic fatigue syndrome in common usage in the United Kingdom and Canada."
[13]	CDC basic facts page on CFS	"A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis." (I see this as inconclusive either way - it doesn't say ME is the same or different - WLU)
[14]	NICE	"This guideline is about the care of people with chronic fatigue syndrome, which is also called myalgic encephalomyelitis (or encephalopathy)"
[15]	North American Journal of Psychology	"Should no distinct features emerge, then ME could merge in the continuum CFS. No differences were found regarding functional status although ME patients reported more general fatigue. ME patients have more attention problems whereas CFS patients show more memory difficulties and a slower reaction time. Our results do not fully support the research criteria for ME. These differences could be more helpful in delineating a continuum instead of supporting distinct conditions.

I cited these journal articles because they are recent (all 2008 I think), and explicit (i.e. they say "ME = CFS"). The other sources aren't necessarily recent, but they are noteworthy.

Counter-arguments I have seen have the following sources:

Link	Source	Relevant quote	Comment
[16]	CDC web curriculum for A Primer for Allied Health Professionals	"Various terms are incorrectly used interchangeably with CFS. [...] The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."	This does not link to the case definition used, and the case definition of ME does not seem to appear on the CDC webpage. It states that the case definition is different, not that the conditions are different. Given the ambiguity of what CFS is, pathology, etiology, treatment, etc. this isn't a statement that ME is different from CFS. It's also a web curriculum, which I don't see as superior or more encompassing than the glossary page. - WLU
			Erm no, it's quite clear, and specifically mentions features that I think most of the pro-CFS lobby here and in general reject as being part of CFS, eg. outbreaks, of disease, muscular signs, etc. If the case definition is distinct that's more than just a slight variance, it will select a largely if not completely different population. That's what distinct definitions are supposed to do. I added (in bold) the most crucial black-and-white statement that you deliberately edited out, so now you have no wiggle room whatsoever: the terms are NOT interchangeable.
[17]	WHO manual, the ICD-10	G93.3 - Postviral fatigue syndrome - Benign myalgic encephalomyelitis	The ICD doesn't mention CFS at all, but when CFS is searched for, two links pop up - G93.3 and R53. In neither case does an explicit statement appear saying that CFS is, or is not, ME. The only thing I see in common is the appearance of postviral fatigue syndrome which seems to include BME. I interpret this to mean CFS is a synonym for ME. This link alone is not really sufficient to state anything about CFS. - WLU

Please expand the tables if possible. The purpose is to determine if CFS and ME are generally recognized as different conditions, by who, and with what caveats. If they are judged the same, there's an issue to determine which is the appropriate name to have. I firmly believe it is CFS as there is much evidence that it's the more common name in research circles. WLU (t) (c) ^{(rules - simple rules)} 17:29, 15 September 2008 (UTC)

here

Guido has also cited three articles that purport to place ME as superior over CFS (here). I've looked into one, and added it to the table above (here). It more accurately states that ME and CFS appear, based on their research, to be a continuum rather than separate conditions. The other two I looked into but couldn't find electronic copies of. One is from 1994, published by Westcare - it's old, and I don't know who or what Westcare is. The other is just a title and a year, with some authors. Can't tell if it's a reliable source or not. WLU (t) (c) ^{(rules - simple rules)} 17:45, 15 September 2008 (UTC)

Please leave out all sources that do not research or review this matter. Guido den Broeder (talk, visit) 17:54, 15 September 2008 (UTC)

What do you mean, references that don't research whether CFS and ME are the same thing? I've only seen one, the NAJP paper, which concludes that CFS and ME are the same thing. Please provide sources that state ME and CFS are not the same thing. There are several sources, recent ones, that explicitly state they are the same thing, and without an explicit statement from equally reliable sources that say they are different, it seems quite unambiguous. I have found none to date that firmly say CFS and ME are different, the closest is a CDC web course that states they had different case definitions. A case definition does not seem to be a modern diagnostic tool. It would seem to be used to distinguish cases in a single outbreak, not as a definition for research purposes. Plus, it was published in the 50's, plus it's a single, unreferenced sentence from a course outline. It's not a textbook, it's not a major publication or news release, and if you interpret it to say CFS and ME are different things (which is a stretch) it's contradicted by other statements on the CDC website. WLU (t) (c) ^{(rules - simple rules)} 18:16, 15 September 2008 (UTC)

I'm sorry, I'm not going to go through 4,000 off-topic publications here. Restrict it to on-topic research if you want a response. Guido den Broeder (talk, visit) 18:39, 15 September 2008 (UTC)

Sure, I'm not asking you to go through 4K worth of off-topic publications. I'd just like one or ideally several that explicitly states that ME and CFS are different. The best choice to support this would be a journal article comparing the two. Ideally a the most recent one, since if it's old it doesn't seem to have impacted the scholarly community (i.e. there's 10 publications from this year that states explicitly that ME and CFS are the same thing). Without that publications, or set of publications, I think we're well justified in saying the terms are synonymous. WLU (t) (c) ^{(rules - simple rules)} 18:58, 15 September 2008 (UTC)

The sources that I already gave suffice, i.e. several more than you listed. Although simply writing down the definitions is enough. Guido den Broeder (talk, visit) 19:14, 15 September 2008 (UTC)

You mean the ones here? I've already discussed them - one acutally contradicts your point, the other two are not available. I've discussed this already, here. WLU (t) (c) ^{(rules - simple rules)} 19:29, 15 September 2008 (UTC)

I will no longer respond here, either, until you come up with some evidence for your view. Guido den Broeder (talk, visit) 19:32, 15 September 2008 (UTC)

(undent) I have, it's the table that leads this section. It's pretty clear. WLU (t) (c) ^{(rules - simple rules)} 19:36, 15 September 2008 (UTC)

(undent)"also known as" does not mean "is the same as", it simply reflects the commonplace reality that they are unfortunately conflated, despite the fact that the definitions are technically mutually exclusive. No current "CFS" definition requires exertional muscle weakness with abnormally prolonged recovery and other physical signs. In fact all official, popular CFS definitions expressly forbid the presence of organic disease signs and testable findings, whereas ME necessitates them. It's as simple as that and I believe an inteligent five year old could spot the extensive differences between CDC and Ramsey. Only the "Canadian" definition tried to jam the names together on top of a mainly ME definition, but it doesn't have much popularity among researchers or authorities and retaining the CFS element is largely political correctness. 62.69.36.100 (talk) 08:45, 21 September 2008 (UTC)

Sources, not opinions, are required to adjust the main page. WLU (t) (c) ^{(rules - simple rules)} 12:16, 21 September 2008 (UTC)

ME talk page

Note that Guido has started another discussion at talk:ME - Talk:Myalgic_encephalomyelitis#Resurrection. It looks like a POV fork, particularly given the lack of sources supporting a separate page. If nothing new has been presented or discussed in reliable sources, this seems like a huge waste of time. WLU (t) (c) ^{(rules - simple rules)} 20:51, 15 September 2008 (UTC)

Ah, the talk page that you claimed didn't exist.

The sources for ME will be in the ME article, as is normal Wikipedia procedure. The article will be discussed on its own talk page only. Guido den Broeder (talk, visit) 21:20, 15 September 2008 (UTC)

I never claimed it didn't exist. I stated repeatedly that the main article it attaches to is a redirect for the CFS page. By my interpretation, creating an ME page would be a content or POV fork since ME and CFS are different words for the same thing by my reading of the sources. In fact, once this has settled, I'll be redirecting one of the talk pages to the appropriate talk page (unless ME and CFS become separate pages, which I can't really see happening). Obviously I didn't claim it didn't exist, since I've actually contributed to that talk page. WLU (t) (c) ^{(rules - simple rules)} 22:26, 15 September 2008 (UTC)

You will do nothing of the kind. Guido den Broeder (talk, visit) 22:37, 15 September 2008 (UTC)

You will obey. JFW | T@lk 23:07, 15 September 2008 (UTC)

Guido, if you're going to create a page, despite tons of opposition and no support from regular contributors or any sources, you're completely violating WP:CONSENSUS, WP:POINT and WP:UNDUE, not to mention WP:OR. Create the ME page and it will be redirected. Keep doing so and you will end up blocked. Not by me obviously, I can't. But someone will. You are editing against consensus with no support that matters. So please stop bluffing, either be a giant dick and get blocked, or cooperate with other editors to build a better page. WLU (t) (c) ^{(rules - simple rules)} 00:57, 16 September 2008 (UTC)

Thanks for the threats and the insults. Nice to know your weight, too, apparently your single voice alone easily outweighs the dozen or so good contributors who are in favour. But no matter, consensus is not needed to start an article on a fresh new topic. I am already writing. Guido den Broeder (talk, visit) 01:03, 16 September 2008 (UTC)

I don't see much from any other contributors with substantial points. Tekaphor is about the only one, and s/he doesn't seem to have much of an opinion so far on the ME/CFS issue. Given the plethora of sources that support CFS and ME being synonymous, it would require some mighty good sources that state ME and CFS are different. I haven't seen any so far, a poor quality statement from a CDC on-line course, some original research that plays with the WHO lack of clarity, and that's about it. At best, two people think you've got a good idea, and Bricker hasn't posted anything really convincing. WLU (t) (c) ^{(rules - simple rules)} 01:11, 16 September 2008 (UTC)

Tendentious editing

Guido accuses me of vandalism But he said the reason he reverted all my edits was, he thought the Nightingale selfpub is a reliable source. So why did not he get consensus and add it back in? And not just delete all my edits? If you don't like one edit, you toss out 99 and accuse the editor of vandalism? I am disturbed on Guido's behavior and I hope he will explain it. RetroS1mone talk 22:57, 15 September 2008 (UTC)

If theres stuff in here that needs an explanation there are alot of references!! so why put on a refimprove tag, this is sour grapes, Guido can you please try to work with other people please. RetroS1mone talk 23:02, 15 September 2008 (UTC)

I too find the use of the word "vandalism" in the edit summary inexplicable, and the use of the tags {{NPOV}} and {{refimprove}} sounds more like an attempt at WP:POINT. Just because the Hyde reference is removed, do you then call the content (which hasn't changed) POV? Don't understand. I have asked Guido (on his talkpage) to avoid the use of the word "vandalism" except in reference to "MY FRIEND GAVIN HAS ME, LOL 1!" JFW | T@lk 23:04, 15 September 2008 (UTC)

The Hyde reference wasn't the only thing that was removed. The whole article got shifted 30 degrees towards the psychosomatic.

And no, this is not a self-publication, nor is Jason. Hyde is neither the publisher nor the author (except for a few articles).

But you know this, of course, since it has been discussed before. You just want to push all the psychosomatic pov in simultaneously so that nobody has the opportunity to object. Guido den Broeder (talk, visit) 23:17, 15 September 2008 (UTC)

That is true: apart from excising Hyde (which is indeed self-published, as he heads the Nightingale Foundation), RetroS1mone has made various other useful edits. I cannot believe that you object to listing psychiatric problems being one of the suspected causes of CFS. Is that your perspective on NPOV, then? JFW | T@lk 23:24, 15 September 2008 (UTC)

So if the CDC publishes a book that was edited by its head you will throw that out as well?

My perspective on NPOV can be found in the guideline, thanks. Guido den Broeder (talk, visit) 23:48, 15 September 2008 (UTC)

This is just how Guido operates. Have a look here. Also I just had an entry about him in the administrator's noticeboard which has just been deleted or archived. And WLU recently had a complaint against him on the admin noticeboard by Guido even though again it appeared to be Guido causing the problems. No admins seem interested in doing anything, Mangojuice appeared to be supporting Guido (even though he's warned him in the past not to do what he's doing now), and then Guido started interacting on the talk pages with me again. However it appears that the same thing is now happening with RetroS1mone, and it also appears that Guido is in an edit war with WLU over the Sophia Mirza article. The only options appear to be to continue having edit wars, do nothing (and let Guido have his way), or convince someone to ban him. --Sciencewatcher (talk) 00:03, 16 September 2008 (UTC)

May I suggest another option? Stop pushing psychosomatic pov, and start contributing. Guido den Broeder (talk, visit) 00:13, 16 September 2008 (UTC)

Also see the cfs management page. The same thing is happening there. I thought Guido was going to work with me, but apparently not - he just keeps putting in pov and dubious tags and refusing to discuss the reasons for them. It looks like another edit war is inevitable. --Sciencewatcher (talk) 00:50, 16 September 2008 (UTC)

And in case people haven't noticed, Guido is also having an edit war and making threats to block JFW (an admin, no less, so I'm not sure how he's going to manage it). Anyway, see here. --Sciencewatcher (talk) 00:54, 16 September 2008 (UTC)

The problem with the Hyde book is not who edited it, it's who published it. If the CDC published a book edited by its head, that would be a meaningful source because it would be published by the agency, not the individual. The agency has a reputation of being a solid fact checker. For WP:MEDRS, the criteria is "Ideal sources for such articles include general or systematic reviews in reputable medical journals, widely recognised standard textbooks written by experts in a field, or medical guidelines and position statements from nationally or internationally reputable expert bodies." Hyde is not published in a medical journal, it's not a standard textbook, and it's not a position statement from a nationally or internationally reputable expert body. It's self-published. Something published by the CDC would be published by a nationally and internationally recognized expert body so it would be in. There is a huge difference, so either you don't understand it or you are willfully ignoring the criteria. Now that you know, please drop it. Hyde does not appear to be reliable, but if you really aren't sure, take it up on WP:RSN. WLU (t) (c) ^{(rules - simple rules)} 01:02, 16 September 2008 (UTC)

A week ago I thought I had seen it all, but you people have broken all records when it comes to threatening, insulting, pushing and lying. My compliments, I will not forget. Guido den Broeder (talk, visit) 01:07, 16 September 2008 (UTC)

"The agency has a reputation of being a solid fact checker."

You mean like the way the agency failed to recognise the Incline Village outbreak of ME, faffed about attempting to trivialise the threat to local tourism, and ignoring local doctors like Peterson (who still has blood on ice waiting to be examined) and persuaded by the insurance industry together with being waylaid by the chronic EBV silliness, invented the most denialist and stigmatising fabrication possible while refusing to listen to ME specialists to the extent they gave a vote of no confidence to the proceedings? Who now have a "population based" definition that selects people the majority of whom "didn't know they were ill"? Yes, I can so believe that! 62.69.36.100 (talk) 05:56, 21 September 2008 (UTC)

Tags

I'm puzzled by Guido's addition of the tags {{POV}} and {{Refimprove}}. I can understand Refimprove, because with the excision of Hyde certain sections now lack citations, but POV is a bit odd. The content of the article didn't change much with RetroS1mone's edits. I am curious why RetroS1mone also removed references to the L.A. Jason article (2001) that was quoted in the intro? Is that perhaps because it is published in J Chronic Fatigue Syndr? JFW | T@lk 06:15, 16 September 2008 (UTC)

Removing reliable sources and erronously tagging already verified material as material that needs sourcing, wrongly suggest to the reader that there may be are insufficient sources for a biological nature etc. of CFS. The other changes also push the psychosomatic. Guido den Broeder (talk, visit) 08:49, 16 September 2008 (UTC)

Wow who is disputing a biological nature for CFS, no one. People are trying to make this article go by current knowledge about CFS. And its not great. There needs alot more research IMHO. But that is my opinion and my opinion and your opinions are not how we write encyclopedia. Guido please stop using Wikipedia for making your point about ME and infectious causes and work with other editors to make it encyclopedic. Not much stuff about psychosomatic in there really!!

JFW the Jason article remove was a mistake and I will try to put it back, may be an editor will do it before me. What they said in the lead was exageration from Jason article, I took it out and I was going to reword, then it said Jason was not referenced, and I took the other one out bc I thought there was not a full reference, it was my mistake and I am sorry for it. RetroS1mone talk 12:22, 16 September 2008 (UTC)

Er, infectious causes and ME are encyclopedic. I wasn't working on the first, but I am working on the second. "Work with other editors" sounds a bit strange here. I have happily worked with all the good users of the ME project, but how to work with you I would not know, that much is true. Guido den Broeder (talk, visit) 12:41, 16 September 2008 (UTC)

JFW, I looked at the Jason article again and now I think it is not a reliable source. The journal is not indexed on medline that tells you it is not a very reliable. So I will not put it back in. Other Jason articles from rs say similar things so some one could add one of those.

Guido please. You were at AN/I already and you keep making attacks on others, like WLU is stalking you, you report me for "vandalism" w/o even telling me, and when I didn't vandlize, and your behavior is getting real tiring on me. I would try talking at your talk, but you delete every thing people put there. Please stop now you do not own this topic or this encyclopedia. RetroS1mone talk 13:08, 16 September 2008 (UTC)

Play by the rules, that is all I'm asking of you. Guido den Broeder (talk, visit) 13:17, 16 September 2008 (UTC)

ME as a separate condition from CFS

Handbook of CFS

Fennell, Patricia; Jason, Leonard; Taylor, Renée R. (2003). Handbook of chronic fatigue syndrome. New York: Wiley. ISBN 0-471-41512-X.{{cite book}}: CS1 maint: multiple names: authors list (link)

“The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state where the one essential characteristic of M.E. is acquired Central Nervous System (CNS) dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of the CDC, Oxford, Australian and Canadian CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say: “you have CFS and nothing can be done about it”. The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.”

My problem with this is that it seems to use ME and CFS as descriptors rather than names (i.e. akin to saying brain swelling and being tired). It's like calling "cancer" "cell division", then criticizing the term for not distinguishing between a baby and a tumour. Do researchers and physicians treat CFS as a specific "thing" or just as a description? Just being tired isn't enough for CFS, otherwise exhausted heart attack patients would be diagnosed with CFS. But if this represents the scholarly majority opinion or a substantial minority, this is a great source. The substantial number of publications by Jason & Taylor regards CFS suggests that their ideas have a fair amount of acceptance. See below for a related comment. WLU (t) (c) ^{(rules - simple rules)} 16:41, 16 September 2008 (UTC)

Definition Essentials

"Some of the definition essentials required to accurately diagnose either M.E. or CFS, or any chronically ill patients group, include:

A working case clinical definition must be short, clear and testable.

Patients and their illness or illnesses must be part of an integrated system. Neither the patients’ patho-physiology nor their illness can be understood without a concise knowledge of their integrated pathophysiological systems.

A statistically significant group of patients who have M.E. and CFS type illnesses must be subjected to a complete personal and family history to map the genetic and historical causes of their illnesses.

Accordingly, the patient’s illness can only be understood if a complete total body mapping is performed on all systems and organs. The mammalian and animal bodies are an integrated physiological mechanism and when one major system change occurs, many physiological systems are liable to shift.

In the past it has been facile to pose psychiatric diagnoses on M.E. and CFS patients since psychiatric diagnoses cannot be subjected to scientific examination. Psychiatrists rarely actually examine patients and almost never do an integrated patho-physiological patient investigation of the patient’s organs and systems. Nor have most psychiatrists been of any help in diagnosing M.E. and CFS patients except to the insurance industry. In the more than 70 years since the first major M.E. and CFS epidemic struck the Los Angeles County General Hospital in 1934, no psychiatric treatment has proven significantly effective in treating the M.E. and CFS group of patients and restoring them to health. This is understandable since neither represents a psychiatric disorder.

Effective treatment of the M.E. and CFS group of patients depends upon precisely defining the organ and system pathologies and learning how to treat these patho-physiological conditions. M.E. and the CFS group of illnesses are chronic illnesses. For too long physicians have been considering chronic diseases and chronically ill patients as they would acute short-term illnesses. We believe this is an error and we direct those interested to our chapter on diagnosis. Relatively young chronically ill patients, often do not have a disease process, they often have many disease processes." Guido den Broeder (talk, visit) 10:58, 16 September 2008 (UTC)

Spaced per the paragraph breaks. Combined with the above section, I would still say that ME and CFS are mostly used interchangeably, but here is a reference for a statement like "Advocates for a separation between a diagnosis of ME and CFS point out that while ME and CFS are treated by insurers and doctors as specific conditions, they are actually vague syndromes and diagnoses of exclusion." Also good for discussing the failure of pyschological interventions (provided there's no more recent and reliable references that support psychological interventions being useful - CBT doesn't count 'cause it changes behaviour). Wiley is eminently reliable so that's not a concern. It'd be nice to see how the book distinguishes between ME and CFS more specifically. WLU (t) (c) ^{(rules - simple rules)} 16:41, 16 September 2008 (UTC)

Jason et al.

Jason LA, Torres-Harding SR, Jurgens A, Helgerson J (2004), "Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome {{pdf}}", Journal of Chronic Fatigue Syndrome, vol.12 p:39-52,

about:

Jason LA, Helgerson J, Torres-Harding SR et al. (2003), "Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability." Eval Health Prof; 26: 3-22.

"To date, there has only been one investigation comparing the Fukuda et al. CFS criteria with the ME criteria. People meeting the ME criteria were compared with: (1) those meet who met only the Fukuda et al. CFS criteria, but not the ME criteria; and (2) those whose fatigue was explained by a psychiatric illness. Those meeting the ME criteria, in contrast to those meeting the CFS Fukuda et al. criteria, had poorer neurological, neuropsychiatric, fatigue/weakness, and rheumatological symptoms than those with chronic fatigue explained by psychiatric conditions." Guido den Broeder (talk, visit) 11:20, 16 September 2008 (UTC)

With apologies for the length, WP:TLDR does apply...

Crippling to Jason et al 2004's use in distinguishing between ME and CFS is that, well, it doesn't - it distinguishes between different definitions of CFS and psychiatric patients with chronic fatigue (no "syndrome"). The only part of the paper that is really useful for the ME is different from CFS argument is the literature review which talks about the only comparison between ME and CFS criteria. It also contains the words "Many patient groups in Britain, the US, and other countries have preferred to use the term Myalgic Encephalomyelitis rather than the term CFS." - i.e. implying the terms change across country lines but the condition does not.

Jason et al 2003 would be absolutely fantastic to have if anyone has a full text PDF to e-mail. This could be used to build a case that ME and CFS are separate, but given my issues regards the literature review in Jason 2004, I kinda doubt it. The guts of '03 would seem to be "those meeting the ME criteria were sicker than those meeting Fukuda", but if the criteria for ME and Fukuda are different (i.e. ME has stricter criteria) then this is somewhat meaningless. Given the paragraph...

“ Dowsett and associates’ criteria for ME bear some similarity to the Lloyd et al. Australian case definition of CFS. Both stipulate that postexertional malaise as well as memory and concentration difficulties are central for a diagnosis. Factor analysis studies have also suggested the importance of post-exertional malaise and cognitive problems.In contrast, for the Fukuda et al. criteria, both of these symptoms are optional and not required. They are among a group of eight symptoms, of which a patient must have four ”

...it does seem to say people with ME are sicker because the criteria for ME are stricter. This doesn't suggest that ME is different from CFS, it suggests that the criteria used by some groups to define ME are stricter than the criteria used by other groups to define CFS but fundamentally it's the same gestalt. The relevant statement is "Those meeting the ME criteria, in contrast to those meeting the CFS Fukuda et al. criteria, had poorer neurological, neuropsychiatric, fatigue/weakness, and rheumatological symptoms than those with chronic fatigue explained by psychiatric conditions" That's "poorer", not "fundamentally different" - it's a matter of degree rather than quality. Otherwise it's basically saying the criteria for ME are pretty similar to the criteria for CFS. That's my reading of it. Essentially Jason 2004 is somewhat irrelevant, but Jason 2003 is relevant, but based on the '04 summary of '03, '03 does not back the idea that ME and CFS are different. WLU (t) (c) ^{(rules - simple rules)} 17:18, 16 September 2008 (UTC)

Fukuda et al.

Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A (1994), "The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group", Annals of Internal Medicine 121 (12), 953-959

• "However, none of the components, including the revised case definition of the chronic fatigue syndrome, can be considered definitive. These research tools will evolve as new knowledge is gained." Guido den Broeder (talk, visit) 11:32, 16 September 2008 (UTC)

So a reliable paper published 14 years ago said that the revised case definition is not final, but did not say that ME and CFS were different? That certainly supports the idea that the definition and research for CFS is not finished, but not that CFS and ME are different. WLU (t) (c) ^{(rules - simple rules)} 17:23, 16 September 2008 (UTC)

Namechange workgroup

Lavrich C, Kenney KK, Lapp C, Herd J, Kahn D, Levine S, Klimas NG, Jason LA 2003), "Recommendations of the Name Change Workgroup Presented to DHSS CFS Advisory Committee", September

• "Because the names for this illness are widely believed to be inadequate, the U.S. Department of Health and Human Services CFS Coordinating Committee established the Name Change Workgroup NCW). Its charge was to investigate name change issues and present name change recommendations. The NCW reviewed the published CFS/ME literature, communicated with researchers, patients, and physicians, and conducted several surveys to further gauge opinions of various stakeholders."

• "Under the Neuroendocrineimmune dysfunction syndrome, we recommend the following subtypes: A. Myalgic Encephalomyelitis B. Fukuda et al. (1994) criteria C. Canadian clinical criteria D. Gulf War Syndrome"

• "Myalgic Encephalomyelitis (ME): Myalgic Encephalomyelitis (ME) has been documented in the medical literature since 1934 in both epidemic and sporadic forms. ME is a systemic illness. Patients experience generalized or localized muscle weakness following minimal exertion with prolonged recovery time. Additionally the illness encompasses Central Nervous System involvement (e.g., sleep disorders, autonomic dysfunction, cognitive dysfunction disturbances, endocrine dysfunction, proprioceptive dysfunction, sensory dysfunction) and variable involvement of cardiac and other bodily systems. ME has marked fluctuation of symptoms over time and an extended relapsing course with a tendency to chronicity. The extreme post-exertional muscle fatiguability (and increased symptomatology upon exertion) in patients with ME is quite distinct from chronic tiredness. ME has been formally classified by the World Health Organization as a neurological disorder in the International Classification of Diseases (ICD) since 1969 and remains classified in the current ICD as a neurological disorder (ICD 10. G.93.3). Some patient groups have endorsed the term Myalgic Encephalopathy, because the term encephalopathy does not necessarily require an inflammation in the central nervous system. A diagnosis of ME requires central nervous system dysfunction and exercise intolerance. In the Fukuda et al. (1994) criteria below, these symptoms are included in the list of eight characteristic symptoms, of which four must be present; therefore, it is possible for patients to not have these characteristic features of ME using the Fukuda et al. criteria. The NCW received a petition with over 5,000 signatures calling for recognition of ME." Guido den Broeder (talk, visit) 11:47, 16 September 2008 (UTC)

Who was the publisher? Who provided the oversight? Where is this available? Is it accepted by the scholarly majority? CFS is mentioned only in the first bullet, and it does not say that ME and CFS are different conditions. In fact, it uses the slash, suggesting the terms are interchangeable. To evaluate the criteria and come to a conclusion based on your own interpretation of how the criteria mesh is original research, which policy forbids. This is not the equivalent to 10 recent publications which explicitly state the conditions are the same thing. WLU (t) (c) ^{(rules - simple rules)} 15:05, 16 September 2008 (UTC)

Thanks for the explicit sources Guido, I'll review and comment - I may re-integrate them with the table but I'll copy and paste and leave the original post in this section. WLU (t) (c) ^{(rules - simple rules)} 16:03, 16 September 2008 (UTC)

Conclusions

Based on my review of the sources, only one could really be used to support the idea that ME and CFS are different (Jason et al. 2003) but it's findings do not actually support this idea. At best I would suggest that Jason et al. 2003 and Fennell, Jason & Taylor 2003 support the idea that some people think there is a difference between ME and CFS, but it has not been proven yet (in fact, testing seemed to show that the definitions used divide people on a continuum but not into qualitatively different groups because the criteria for ME is stricter). Whether or not this gets weight depends on how well Jason and Co.'s ideas are accepted by the scholarly community, and that's a very different, very difficult question to answer. All are by Jason & co. suggesting his ideas have not been embraced by many others but the extensive publication record of Jason & co suggests they're not seen as quacks but proponents of a viewpoint that hasn't been substantially rejected by the scholarly community. WLU (t) (c) ^{(rules - simple rules)} 17:34, 16 September 2008 (UTC)

Needless to say that my conclusions are vastly different, I find it hard to believe that you simply don't get it even with all the essential stuff in plain sight. We are not getting anywhere this way. Guido den Broeder (talk, visit) 18:03, 16 September 2008 (UTC)

I get it, I just see it as requiring huge leaps of original research to get from these sources to the conclusion that the majority of scholars believe ME and CFS are different conditions. I see why interpret the sources how you do, and based on what you believe to be true about CFS why you make those interpretations. I just think it's not backed up by your sources, and think the quotes I provided above are much plainer - most researcher don't see a difference. At best you could argue that CFS and ME are a continuum of the same condition. I'd give that one sentence. WLU (t) (c) ^{(rules - simple rules)} 18:24, 16 September 2008 (UTC)

I have to agree with WLU. The different definitions (ME/Fukuda/Oxford) just seem to have different levels of strictness about who is classed as having CFS. The Oxford is the most inclusive (and that is discussed in their reasoning) while ME is the strictest. However that does not make it different illnesses. --Sciencewatcher (talk) 18:30, 16 September 2008 (UTC)

As Mangojuice already explained, it's the plainness of your sources that makes them carry no weight. But neither of you gets it. You are claiming that 'bicycle' and 'movable thingy with at least one of saddle and wheels' are the same thing. Guido den Broeder (talk, visit) 18:46, 16 September 2008 (UTC)

A bike is well defined, ME is not. There is no evidence of inflammation, except as a symptom of other illnesses (as in the Sophia Mirza case, when it was most likely due to Herpes). This is the reason that mainstream researchers don't use the term any more, except as a sop to patients who prefer it. The patients keep pointing to cases like Sophia Mirza to prove their point, even though it doesn't do anything of the sort. --Sciencewatcher (talk) 18:56, 16 September 2008 (UTC)

SW, please watch the tone. This is very frustrating for everyone, and civility is difficult to maintain but it's worth the effort. Having the references to review makes the discussion much more concrete, so let's stick to the sources. I don't see a reason to substantially change the page or create a separate page for ME, I think it's sufficient to say that. Striking or removing parts of your previous post would be a nice guesture. Yes, I'm a hypocrite. WLU (t) (c) ^{(rules - simple rules)} 20:00, 16 September 2008 (UTC)

Sorry, just trying to summarise. Try this, from Sharpe (PMID 12448589):

CFS has however long been disliked by patients’ organisations, who regard it as Michael Sharpe 428 Clinical Medicine Vol 2 No 5 September/October 2002 ‘demeaning’ of their illness. The term preferred by those organisations in the UK is myalgic encephalomyelitis (or more recently myalgic encephalopathy) both abbreviated as ‘ME’. The term myalgic encephalomyelitis (ME) was introduced in a Lancet editorial in 1956 to describe an illness which affected staff at the Royal Free Hospital in London at the time of an epidemic of poliomyelitis8. It has subsequently been used by some researchers, many patients and most of the UK patients’ organisations as a term for an illness that is either similar to, or a severe form of, CFS. The working party report uses both CFS and ME but declines to recommend one term over the other, preferring the compromise ‘CFS/ME’. Whether this solves the issue remains to be seen. But more important than the name is the implication it carries. For many ME implies not only a ‘real illness’ but also a fixed and permanent disease like multiple sclerosis (MS). This is a matter of concern to those who regard the condition as potentially reversible with appropriate treatment. An associated issue is whether CFS/ME is best regarded as a ‘medical’ or as a ‘psychiatric’ illness. This question is of course as pointless (in the sense that such a classification of illness is purely administrative and says nothing about the nature of the illness) as it is central (in so for as psychiatric conditions are often stigmatised as ‘imaginary’, ‘blameworthy’ and a sign of ‘weakness’). Again, the report does not draw a conclusion, but skirts around the issue. The working party’s compromise is to recommend that management should be by ‘multi-disciplinary’ teams. Underplaying the need for psychiatric management may avoid stigma, but for a condition with such a high rate of depression and anxiety, may ultimately result in less effective treatment for patients.

--Sciencewatcher (talk) 20:10, 16 September 2008 (UTC)

That is a relevant text, outlining some of the issues. Thanks, Sciencewatcher. Guido den Broeder (talk, visit) 21:17, 16 September 2008 (UTC)

Definition of ME

The definition of ME can be found in Hyde, 1992 as chapter 4:

• Ramsay AM, Dowsett EG, "Myalgic Encephalomyelitis -- Then and Now: An Epidemiological Introduction".

Definition of ME

1. Generalised or localised muscle fatigue after minimal exercise with prolonged recovery time.
2. Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.
3. Variable involvement of cardiac and other bodily systems.
4. An extended relapsing course with a tendency to chronicity.
5. Marked variability of symptoms both within and between episodes.

of course in addition to the meaning of the term. Guido den Broeder (talk, visit) 19:18, 16 September 2008 (UTC)

Hyde's definition does not seem to have been picked up by by most researchers and clinicians, so at best this should be a brief mention in the alternative names for chronic fatigue syndrome or possibly controversies related to chronic fatigue syndrome page. WLU (t) (c) ^{(rules - simple rules)} 19:56, 16 September 2008 (UTC)

It's not Hyde's definition, it's Ramsay's. What do you mean by picked up? Researchers of what? Of course the CFS researchers didn't pick it up. They research CFS, not ME. This was the definition used in the 12-year epidemiological study of 6,000 patients between 1975 and 1987 published in the other article. You seem to keep forgetting that there was medical research before CFS. Guido den Broeder (talk, visit) 20:15, 16 September 2008 (UTC)

Whoever's definition it is, has it been used by researchers and clinicians to conduct work on ME? Are there any pubmed or even google scholar sources that use this definition as part of their methodology, selection and exclusion criteria, to separate groups for testing or intervention? If so, how prominent are they, is published in the New England Journal of Medicine or an on-line newsletter of an ME forum? Has it been used as a substantive reference on which a major subsequent work has been based? WLU (t) (c) ^{(rules - simple rules)} 20:26, 16 September 2008 (UTC)

It's the other way around, as it should be. The definition was based on a large amount of research since 1934, a lot of which you find referenced in these artciles, other chapters in Hyde 1992, and in Ramsay's own book. A huge difference with CFS, that was invented by a few random people on a rainy afternoon or so, with some disagreeing. After the definition was shaped, it was used in Ramsay's work as mentioned above. Guido den Broeder (talk, visit) 21:11, 16 September 2008 (UTC)

You should read the Oxford definition here, which gives some insight into why Holmes chose the name CFS ("An attempt to address the problem of case definition was made by Holmes and colleagues in 1988, who chose the name chronic fatigue syndrome (CFS) because it is descriptive and free from unproven aetiological implications.") I can't find any good refs about cfs vs me research, but I suspect that it might be discussed in some of the books written about CFS (e.g. "Chronic Fatigue Syndrome (CFS/ME): The Facts" by Sharpe, which I haven't read). --sciencewatcher (talk) 22:09, 16 September 2008 (UTC)

Yes, but that has nothing to do with ME. CFS replaced 'Chronic EBV'. Guido den Broeder (talk, visit) 22:16, 16 September 2008 (UTC)

The Oxford definition is not etiologically "neutral" as it excluded any signs of disease, even the few CDC CFS still retained at that time (eg subnormal body temperature, IIRC). The authors may deny it but that carries very strong implications as there is little the full weight of modern science cannot detect. The Oxford definition is psychiatrically biased and description neutral, so I wouldn't place much credence in their opinions of the CDC definition, especially since they thought it was too physical. Holmes' silly name choice is inaccurate. You don't have to have a sensation of tiredness or sleepiness (or whatever the hell fatigue means) to have ME but you do have to have the muscle and CNS abnormalities. 62.69.36.100 (talk) —Preceding undated comment was added at 06:10, 21 September 2008 (UTC).

Read the text, it is about the Oxford definition, and they talk about ME. They just discuss Holmes when explaining why the name was chosen. --sciencewatcher (talk) 22:26, 16 September 2008 (UTC)

Read Holmes. They are wrong. Guido den Broeder (talk, visit) 22:55, 16 September 2008 (UTC)

Since researchers treat ME and CFS as synonyms, what is said about CFS goes for ME unless it's specifically saying, as Jason does, that that particular piece of research is not using them as synonyms. As I've said repeatedly, ME and CFS are the same thing as far as most researchers are concerned. "They are wrong" is original research and your opinion, without backing by sources it has no weight. WLU (t) (c) ^{(rules - simple rules)} 00:52, 17 September 2008 (UTC)

Read Holmes. Holmes is the best source for Holmes. Guido den Broeder (talk, visit) 07:03, 17 September 2008 (UTC)

The Holmes 1988 definition of CFS (PMID 2829679) was meant to replace "chronic Epstein-Barr virus syndrome". According to this website [18] (I haven't found a better source yet), ME isn't mentioned in the full text. However, when looking at PubMed it seems obvious that other researchers were assuming ME/CFS are equivalent even back in late 1988. Having a look at the introduction of the 1991 Oxford definition, it basically says that research had often been contradictory, and that the Holmes 1988 definition was inadequate. It goes on to say that study results using differing criteria can't be compared, and that their team was to address all these issues. So what's changed in the 17 years since its release? Not much; the Oxford criteria didn't solve these problems either.

In 2008 we have even more definitions published since then. The issues with the definitions and related criteria are fundamental to all discussions on ME/CFS and are probably the primary source of research inconsistencies and advocate frustration, yet they remain unsolved. The bottom line is however, most researchers assume ME and CFS are similar enough to use synonymously, and CFS is the preferred name. It doesn't matter that little research has been done on the issues of definition; the fact is, this is a popularity contest and the 1994 CDC definition of CFS appears to be the winner, even if it isn't clear how well this criteria is actually applied in research.

_Tekaphor (TALK) 09:59, 17 September 2008 (UTC)

As Mangojuice has already explained, such assumptions by some CFS researchers (not the ME researchers, and if you think it's the majority provide evidence of that) carry very little weight. It is notable as a phenomenon, and therefore deserves mentioning, but it is not a reliable source for verification of the fact. Relevant are only those studies that investigate the matter, and authorities on classifications and definitons. Note that the burden of proof rests with the one that claims two things to be the same. Since the definitions clearly differ, all investigations into the two show that the patients differ (a possible continuum is not the same as synonymous at all), and all authorities say that they differ, maintaining that synonomity has been verified (rather than that some CFS researchers think they are synonymous) is absurd. Guido den Broeder (talk, visit) 10:13, 17 September 2008 (UTC)

Undent. Mango's only comment was to say that the CDC statement seemed to support ME and CFS being different. Despite being an admin I respect, I think he's wrong. Wolff, who is a doctor as well as an admin heavily involved in medical pages, disagrees and thinks they are synonymous, and even the CDC online course is not saying they are different, it is saying they have different case definitions. There is still to be an explicit statement that unequivocally demonstrates that the majority of scholars consider the two to be distinct, or any indication that the ME definition has been used and been useful in distinguishing between ME and CFS. You can't seize on one person who agrees with you and say that you're right. There are several others who disagree. On wikipedia, the majority of researchers do carry weight, in fact - the essence of WP:UNDUE is that what the majority believe is what we report. Twenty-year-old books, uncertain terminology and statements that require interpretation do not result in a new page. If the burden of proof rests on the one who claims they are the same, then we're done. It doesn't by the way, in this case the burden of proof is on the person trying to state that they are different. You have tried Guido, and you have not succeeded. WLU (t) (c) ^{(rules - simple rules)} 10:49, 17 September 2008 (UTC)

The CDC definitely do not see ME and CFS as being equivalent, although they possibly did once. Dr Reeves has also repeated this to Dr Hyde (I think it's in one of Hyde's booklets). Though it's true "definitions are not diseases", it's also true that "the definition of terms is the beginning of wisdom". Two radically opposing definitions (ie one requiring brain injury the other excluding it) have a good chance of NOT discussing the same entity. Definitions are the fundamental filters for distinguishing differing elements of reality and even precede nomenclature and classification. Of course there's some crosstalk as the situation is messy with lax interpretation of definitions and some researchers pressurised into using the most fashionable term for publication when they are clearly not happy with it.

"Wolff, who is a doctor as well as an admin heavily involved in medical pages, disagrees and thinks they are synonymous, and even the CDC online course is not saying they are different, it is saying they have different case definitions."

That's simply absurd and not true. The CDC site says:

"Various terms are incorrectly used interchangeably with CFS".

If it's incorrect to use CFS and ME interchangeably then they mustn't be synonymous. Surely it doesn't get any simpler and clearer than that.

Doctors can have as strange ideas as anyone else, and a survey on non disease in the BMJ proved this. A large purpose of definitions is to differentiate and the ME and CFS definitions radically differ. I suspect sour grapes at this smidgin of vindication of ME activists. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

Actually, I can seize anyone who agrees with me. Now, since I have been unable to find a single researcher stating that cancer and CFS are different, I propose that we merge the CFS article into the cancer article. Guido den Broeder(talk, visit) 11:23, 17 September 2008 (UTC)

Guido, please drop the sarcasm. If you can not find a single researcher stating that CFS and cancer are different, and hundreds claiming that they are the same, then you can merge them. Making a caricature can be useful, but distorting other people's arguments significantly by ignoring half of it is not helpful at all. Fram (talk) 11:40, 17 September 2008 (UTC)

He does make a good point, actually. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

So we can close the issue then - since there appears to be no reason to change the name to ME or create the ME page anew, the discussion is closed. Does anyone disagree (bar Guido)? WLU (t) (c) ^{(rules - simple rules)} 11:44, 17 September 2008 (UTC)

I agree and I say thank you to Tekaphor for a clear explanation about CFS and ME. Alot of people hate it but Wikipedia goes with majority in reliable sources and verification not one persons synthetic version on facts. RetroS1mone talk 12:04, 17 September 2008 (UTC)

The burden of proof is on either claimant. I agree with the emphasis on actual research and the reasoned position of certain authorities; however, this seems overwhelmed by an academic trend that most researchers have adopted when publishing their work (despite a lack of scientific research into the specific issue itself), as well as how patients are generally treated in the community. I care more about the truth than the status quo this article is meant to represent, but Wikipedia isn't about "truth", it is built on a hierarchical structure of verifiability (this is a strength and a weakness, see this satirical comic: [19]). If Wikipedia's rules insist that the majority scholarly opinion (eg a word count of the titles of their papers indexed at PubMed) takes preference over research and authorities, then I can't argue against that. - Tekaphor (TALK) 12:53, 17 September 2008 (UTC)

Wikipedia's rules don't say that at all. They say that evidence must be weighed. If a CFS researcher mentions in passing 'also known as ME' then that is not a notable view, but either a sign of ignorance or a courtesy. If many do this, that is by itself interesting and mentionable, but a thousand times zero weight remains zero weight. However, one of Wikipedia's main weaknesses is that any rule comes second to a weird idea of consensus that has really nothing to do with consensus all, but comes down to pov-stacking, where the voice of a user whose only contribution is the random removal of reliable sources counts the same as the voice of someone who has published on the topic and has read the key literature. Guido den Broeder (talk, visit) 13:36, 17 September 2008 (UTC)

Re Retros1mone, in that case WP should be going with the majority of CFS and ME definitions, which are dramatically different. So different in fact, that many doctors get angry when signs and findings of ME are brought up, because they're not supposed to be there in CFS. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

From the research I have so far looked at, the use of CFS/ME is being used to describe the same syndrome so I also agree to close this part. To Guido, you responded to me above that there are refs showing that the two names mean two different syndromes, could you please post the link to this because so far all I’ve seen doesn't say that. I am just here to try to add an outsider’s perspective here, though I have heard of this syndrome outside of Wikipedia but have never heard it as ME. I still only see the terms being used as synonyms. I also want to suggest what already has been suggested, use the term that the ref uses in the article. If the ref says CFS then use it, if it states both then use CFS/ME and so forth. Thank you for your time, I will continue to read up on this so any suggestions to look at are more than welcomed. --CrohnieGal^Talk 14:10, 17 September 2008 (UTC)

Most research merely says they terms are used interchangeably, they don't say this is correct (and they don't usually deal much with definitions). The CDC at last finally sees sense and agrees that this is wrong.[20]

Incidentally can't recall where on this page I saw it but I wouldn't want to go along with simply renaming the CFS article to ME which would be just as misleading. If their differentials they both deserve their own articles. 62.69.36.100 (talk)

Hi Crohnie, what complicates this discussion is this:

1. they describe the same condition (hence the frequent use of ME/CFS or CFS/ME, or using them interchangeably), yet
2. they are different diagnoses.

It is somewhat similar to Dementia and Alzheimer's disease. There have been the same heated discussions on those two diagnoses as well (pre-Wiki, that is), with the same arguments. Both diagnoses have survived, just as both CFS and ME are still in use today. Guido den Broeder (talk, visit) 14:31, 17 September 2008 (UTC)

Hi Crohnie, since you live in the States you'd mostly hear CFS - ME is preferred in the UK, Canada and a couple other places. Guido's first point is correct, but I've seen nothing to convince me that the second has merit. At best ME is the same condition with a slightly stricter criteria for inclusion. However, since no-one seems to research ME specifically, it's a moot point. The dementia point is...somewhat appropriate, I guess, if extremely misleading. AD is a type and cause of dementia, but the two are considered differently, we don't use them as synonyms and we don't redirect one to the other. One is an umbrella term, the other a sub-type. Regards ME and CFS, there seems to be no evidence they are different conditions, just different names and different criteria for the same condition. It's complicated by the condition itself being poorly understood, but for now it's called CFS. It should be pointed out that some scholars think there is a difference, but the important thing to do then is point out what the difference is - the number of optional features required to make a diagnosis. Calling them different things is semantic hair-splitting in my mind, particuarly given no-one seems to actually USE the ME definition. WLU (t) (c) ^{(rules - simple rules)} 15:06, 17 September 2008 (UTC)

So in your opinion one illness that requires brain injury and muscle fatigability and another which excludes physical signs such as brain injury and muscle fatigability are the same thing despite these contrary descriptions? How do you work that out? Then you contradict yourself somewhat by saying "...the important thing to do then is point out what the difference is - the number of optional features required to make a diagnosis." Well if there's no real difference what would be the point? It's not simply a head count, the nature of the differences matters and some illness definitions can be quite short (though I happen to think because of the confusion a little more info on ME is helpful). Do you also think that "coughing" and "emphysema" are "semantic hair-splitting"? As for using ME definitions, I'm afraid it's being used in the PACE trial and was used in Costa's groundbreaking post-exertion cerebral perfusion study. It's not used enough though, which is why we have so much bad research with results as heterogenous as CFS is.

How people can claim two entities which are defined as being mutually exclusive and one is more often than not roundly rejected as inaccurate are the same is beyond me. Perhaps we should start a movement to have Crohn's disease renamed something "etiologically neutral" like, oh, say, chronic bellyache syndrome (CBS) - sorry if that's perceived to be a bit stigmatising but like "CFS" it's scientific and accurate - doctors working for the insurance industry reassure me so! which must exclude any physical signs. It would mean the same as Crohns (honest), but calling it Crohns would likely gain you the contempt of your GP and you'd lose any benefits. Since there are no findings in most of the CBS research me and my peer review pals have done, you should be content with some handy dandy "lifestyle" advice like the CFS advice to not eat so many fry ups (I wish I'd made that one up, as much as I wish I could stomach the odd fry up, or wheat produce). If I and my chums repeat all this often enough and tell the DwP that CBS patients can "recover" by being rehabilitated back to work "with or without symptoms" then it must be true. 62.69.36.100 (talk)

Thanks to both of you, but then what you say should be easily solved. Use the term used in citations presented in the article. This way there is no confusion on what the ref states and this could easily be the best way to stop the debating on the issue. How about doing this as a compromise on the use of which term is presented? --CrohnieGal^Talk 15:34, 17 September 2008 (UTC)

For one thing that would lead to multiple terms throughout the articles for the same condition - even with a prominent statement at the top saying ME and CFS are the same thing isn't enough if the article switches between the two at random (as far as the reader is concerned). Most articles use ME/CFS at least initially, and CFS for the remainder of the body. It also places an issue of undue weight on a substantially less-used term that is preferred for politicial or public relations reasons by a small group (those small groups also make a distinction between ME and CFS that most articles need). Also, as I've said elsewhere, "We do not alternate first and last names, English or non-English translations of terms, ENGVARs, medical synonyms, the United Kingdom versus Britain, Holland and The Netherlands, strawberry versus Fragaria ananassa, or any other set of synonyms. We don't use synonyms in wikilinks either. Correcting links like [[chronic fatigue syndrome|myalgic encephalomyelitis]], which I have had to do, is nonsensical and again suggests that ME is the "right" term and chronic fatigue syndrome is some sort of embarassing oversight on our part. When it is important, when the division between CFS and ME is important in substance using ME may be preferred. But particularly given the sources themselves prefer CFS over ME, it really seems an undue weight and soapbox issue." Alternation of terms, particularly when the terms are given different meanings elsewhere that we do not ascribe to, is unnecessary. Put it clearly at the top of the page that ME and CFS are equivalent, then use CFS throughout wikipedia would be my very strong preference. The discussion of the ME/CFS naming and case definitions should occur, in the naming or controversies page, but should not be reflected in the body. WLU (t) (c) ^{(rules - simple rules)} 15:48, 17 September 2008 (UTC)

Naturally, sources in the CFS article will have a preference for CFS. You can't conclude anything from that. Sources in the ME article will have a preference for ME plus a subset of CFS literature, as CFS has the wider definition. In the lead of each page, mention the difference. It is not a controversy at all. Guido den Broeder (talk, visit) 15:58, 17 September 2008 (UTC)

Nightingale: Understanding M.E. and CFS

[21] "If a patient or a family member has tried to search the internet for an understanding of either Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS), they will have been overwhelmed by the multitude of technical descriptions and the numerous overlapping medical conditions. Both M.E. and CFS represent a complex, multi-system group of afflictions, adversely affecting the brain, heart, neuro-endocrine, immune and circulatory systems in our bodies and are two separate illnesses. At times, this has led to M.E. and CFS symptoms being confused with the symptoms for neurasthenia, multiple chemical sensitivities, fibromyalgia syndrome and chronic mononucleosis.

The US Centers for Disease Control and Prevention (CDC) first defined CFS in 1988. This definition was later rolled over to a more complex 1994 definition, which was subsequently corrected and corrected again. These CFS definitions have multiplied beyond the two CDC definitions and now include the Oxford Dictionary definitions of CFS (there are two of them), the Australian definitions, and the more recent Canadian definition that talks of M.E. / CFS as though they were the same illness. They are not.

M. E. has a clearly defined disease process while CFS by definition has always been a syndrome."

Disclaimer: note that the above does not present my view. It merely serves to illustrate that different views exist among researchers. Guido den Broeder (talk, visit) 16:43, 17 September 2008 (UTC)

Worth reiterating too, that "Various terms are incorrectly used interchangeably with CFS", from the same source before dismissing the abortive CFIDS and then clarifying ME as above. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

This is not the type of source required and used to expand a medical page, it's Byron Hyde's opinion which he does not seem to have published in mainstream journals or other publications. It fails both WP:MEDRS and WP:UNDUE. Wikipedia reports what is solidly the mainstream and this doesn't seem to be it. WLU (t) (c) ^{(rules - simple rules)} 12:23, 21 September 2008 (UTC)

Welsh Associaton for ME & CFS Support

• WAMES (2004), "ME & CFS: A Report for the Welsh Assembly Government", Welsh Association of ME & CFS Support (WAMES), February 2004

Much that is written in the British medical press about CFS is by psychiatrists referring to a Functional Somatic Syndrome. There are in fact many doctors and scientists around the world who, through clinical experience or scientific research, are convinced that there is also an existing neurological condition, ME, classified by the WHO (ICD -10 G93.3). ME researchers often find it difficult to get published in the UK, even if they are eminent people and their work is peer reviewed. This makes it difficult for health professionals to get an accurate picture of the range of illness covered by the term CFS/ME. Guido den Broeder (talk, visit) 17:23, 17 September 2008 (UTC)

Both are from associations, so they're not WP:MEDRS. Useful for discussions of the ME/CFS terminology but WEIGHT will be a concern. WLU (t) (c) ^{(rules - simple rules)} 17:48, 17 September 2008 (UTC)

The quality of that particular guideline seems rather poor. Guido den Broeder (talk, visit) 19:25, 17 September 2008 (UTC)

That guideline has a huge amount of community support as well as being the reason most of the medical pages aren't stuffed with quackery. It's a fantastic guideline that ensures wikipedia is actually a high-quality source of information on medical matters rather than being a mouthpeice for every nutjob with an internet hookup. WLU (t) (c) ^{(rules - simple rules)} 22:09, 17 September 2008 (UTC)

Hooper

• Hooper M (2007). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research" (pdf). J. Clin. Pathol. 60 (5): 466–71. doi:10.1136/jcp.2006.042408. PMID 16935967. {{cite journal}}: Unknown parameter |month= ignored (help)

This review examines research findings in patients with myalgic encephalomyelitis in light of the current debate about this chronic multiple-symptom, multiorgan, multisystem illness and the conflicting views in medicine. These issues cannot be separated from the political opinions and assertions that conflict with science and medicine, and will be part of this review as they have enormous consequences for scientific and medical research, patients, clinicians, carers and policy makers. ...
There can be little doubt now that myalgic encephalomyelitis is correctly described as an encephalitis associated with upregulation of pro-inflammatory immune responses, with downregulation of suppressor cytokines. This, coupled with the association of NTE gene, validates the WHO nomenclature and classification under neurology that allows the alternative name of post-viral fatigue syndrome. It is heartening that syndromes of uncertain origin are now seen to have a common basis that provides a much better understanding of these complex illnesses. Undoubtedly, the perverse use of CFS, to impose a psychiatric definition for ME/CFS by associating it with fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those with this illness. Guido den Broeder (talk, visit) 21:44, 17 September 2008 (UTC)

Really, really not the best source to base the page on considering it was retracted:

Hooper M (2008). "Retraction. Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". J. Clin. Pathol. 61 (7): 880. doi:10.1136/jcp.2006.042408.retr. PMID 18587027. {{cite journal}}: Unknown parameter |month= ignored (help)

We'd need to get the circumstances of the retraction, but if anything this is evidence that the mainstream medical establishment has rejected those conclusions. I'd say this is the closest to the opposite of a reliable source that I've ever seen. WLU (t) (c) ^{(rules - simple rules)} 22:13, 17 September 2008 (UTC)

Oops, spoke too soon - it looks like it wasn't retracted [22]. Wonder what the real story is... So Hooper, 2008 appears to be back on the drawing board. WLU (t) (c) ^{(rules - simple rules)} 22:17, 17 September 2008 (UTC)

So if Hoooper thinks ME is separate from CFS lets say it in the article "A scientist M Hooper proposes ME is seperate from CFS". And then to avoid undue weight should we also give names of all the researchers who say CFS and ME are the same thing that is the question. RetroS1mone talk 01:24, 18 September 2008 (UTC)

That'd be a lot of names. I'll read it tomorrow, even if published in 2008 it's still only one article and hasn't revolutionized the field yet. If it does, if everyone piles on board and no criticisms come out, then we'll adjust the article accordingly. WLU (t) (c) ^{(rules - simple rules)} 01:30, 18 September 2008 (UTC)

There are a few problems with the Hooper paper. He talks about the "imminent extinction of modern psychiatry", and he says "the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes" (even though previously he says that cancer is diagnosed as CFS, which it isn't). Also, as regards ME, he says "There can be little doubt now that ME is properly described as an encephalitis" but there is no reference for that statement (and it isn't covered anywhere earlier in the paper). I'm not sure how this paper managed to get into the BMJ. It just seems to be a diatribe against psychiatry. --sciencewatcher (talk) 14:56, 18 September 2008 (UTC)

I agree, I've not made my way through it totally yet and I've already raised my eyebrows more than once. The sources he does use to justify some of the more...interesting points...are quite suspect. The guts of the first bit of the definitions section are patient and advocacy groups, talks at non-academic conferences, etc. It definitely seems drawn from the patients' perpsective, making it valuable in that regard. I still can't see re-writing the main CFS page based on it. I really, really would like to see any replies or comments produced as a result of it, as well as which works cite it and how. WLU (t) (c) ^{(rules - simple rules)} 16:54, 18 September 2008 (UTC)

It doesn't appear to have any comments or any other articles citing it. It would be interesting to know why it was retracted and then unretracted. --sciencewatcher (talk) 17:14, 18 September 2008 (UTC)

Surely he was talking of misdiagnosis of cancer as ME, which like any misdiagnosis can have grave consequences. The psychiatric redefinition of CFS certainly attempts to ally it to F48. neurasthenia and/or "fatigue syndrome" the latter which IIRC only appeared after the creation of CFS. It's not a diatribe against psychiatry it's a diatribe against the abuses of mental health misdiagnosis which does bring psychiatry into disrepute. I can't recall exactly what his specific reasoning for ME was but I'm sure it was related to some recent immune biochemical finding related to CNS inflammation, which we know is present from other sources anyway. 62.69.36.100 (talk)

Neurological signs vs CFS

Isn't ME supposed to have "neurological signs"? And aren't these supposed to be absent or ruled out before a diagnosis of CFS can be made? Perhaps someone more familiar with the older ME research can shed some light on this issue. I might be missing something, but it would be ironic if CFS by definition must rule out some of the signs of ME. - Tekaphor (TALK) 05:25, 19 September 2008 (UTC)

I would assume that only neurological damage would rule out CFS. This isn't seen in ME (abnormal SPECT scans don't necessarily indicate damage). --sciencewatcher (talk) 14:19, 19 September 2008 (UTC)

My look through google scholar, which is less discriminating than pubmed as well as providing less reliable sources, was for 2008 articles. From my recall there were very few including the term ME, and they combined it with CFS. Tekaphor, if you can dig up any references beyond Hooper (above) that support the separate ME diagnosis you'd be helping the page a lot. Unfortunately finding reliable sources is not the easiest task and does take a fair amount of time. I believe I recall seeing that CFS is a diagnosis of exclusion; any findings of any condition other than CFS that can cause fatigue automatically moves the patient out of that diagnosis. Needs work, and an expert. WLU (t) (c) ^{(rules - simple rules)} 20:09, 19 September 2008 (UTC)

Diffuse brain injury is found in ME, and the placing of the punctate lesions found on MRI, are one of the differentiating factors with MS (MS expert Prof Poser wrote an article on this). Additionally there's a general atrophy of white matter averaging around 11%, consistent with severity rather than duration. This should all be in the references unless someone's removed them. Post mortems on ME have found bleeding in the CNS perivascular spaces and softening of the brainstem. Physical signs such as rapid muscle weakness with cogwheel motion, muscle jitter, dysautonomia, cerebellar ataxia, loss of proprioception and depth perception are widely interpreted to be exclusions and seizures, blurred vision, etc are just not generally recognised or dismissed as deconditioning epiphenomenom despite that they may be of sudden onset or intermittent. The irony is many of these findings are done under the aegis of CFS despite, and explaining why, they technically are not yet recognised. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

If you could provide the reference, we could discuss why they were removed (if they were) or add them to the page. WLU (t) (c) ^{(rules - simple rules)} 12:25, 21 September 2008 (UTC)

Validity of ME

Here is some very useful info by Ellen Goudsmit, who appears to have researched this quite extensively. She says "Sir Donald Acheson was the person responsible for the name and has since written that he no longer supports it" and "Dr Ramsay never claimed that there was evidence of myelitis. There is still no sound evidence for myelitis". Her co-cure article isn't a reliable source, but it might be worth digging to find out what her sources are, as it would be worth putting into the article. --sciencewatcher (talk) 14:50, 19 September 2008 (UTC)

I've never heard of Acheson recanting. When surfing through the website given at the end, it seems that she doesn't believe CFS is a single entity, and makes the following comment ([23]): "The authors used an old set of criteria (Oxford), which select a highly mixed population, dominated by people with psychological problems. They also tend to exclude patients with ME (since many have neurological signs suggestive of disease)." Perhaps she is an advocate of "ME-opathy"? Anyway, my impression is that the encephalitis was based on two types of evidence: (1) rare autopsies on patients and animals who died in epidemics, (2) clinical observations which the researchers viewed as very similar to those observed in encephalitis. This research was probably done during the acute onset stage, not years later like it is today. Modern research reveals chronic inflammation, and some of it suggests CNS inflammation; however, "encephalitis" is acute inflammation. Obviously looking at actual brain tissue for the impact is ideal, but there certainly hasn't been "lots of autopsies" done in modern times, although I've read that a tissue bank is being set up. - Tekaphor (TALK) 05:56, 21 September 2008 (UTC)

Goudsmit is a psychologist allegedly with mild ME so I'm not surprised she pours scorn on myelitis. Part of her reasoning is shared with that of the MEA's Dr Shepherd who mistakenly thought that if they altered the name from ME "-myeltis" to ME "-opathy" the psychologisers would magically cede defeat and accept all the many, other biological findings as well, and relenquish ME to the validation of largely contemptuous medical doctors and a disinterested research community. Of course to do that it's necessary to say myelitis isn't found. It never happened and instead a few of the "down with da kidz" psychologisers publicly adopted ME opathy as a friendly front while keeping their using policy. Doctors don't commonly reject ME because of one absent finding (which is difficult to test for in the living anyway), they reject it because they're convinced patients are annoying obsessive delusionals with a wholly mental illness, possibly even without the illness (cf. "culturally defined" or "over-medicalised" etc). IIRC Dr Shepherd/MEA has since softened on the myelitis/opathy debate saying he's happy to use whichever, but every now and then Goudsmit gets on her soapbox, and ignores the strong hints dropped by cases such as Sophia Mirza's that myelitis is in fact quite possibly present. Other activists have also criticised her claims about the "London" criteria[24] In general her literature reviews and critiques (eg. of Beard and McEvedy), can be helpful though. 62.69.36.100 (talk) 08:09, 21 September 2008 (UTC)

In Mirza's case the inflammation was consistent with a herpes infection, so that doesn't really help . And as far as Goudsmit's comments: let's just stick to the facts...if Ramsay said there was never any evidence of myelitis then that is pretty damning evidence. --sciencewatcher (talk) 15:54, 21 September 2008 (UTC)

62.69.36.100 calls people "psychologisers" that is not helpful so please do not use inflamatory language like that. How do people still think in 2008 that psychological illnesses are not biological and are not real I do not understand. We do not know every thing about psychological illnesses but we know enough to say, they probably have biological basis, and we know, psychotherapies can also change what happens, in the brain biological-ly. RetroS1mone talk 17:58, 21 September 2008 (UTC)

Yes, and if you look at depression, it is biological too...of course it must be, unless you believe in a soul. And stress/depression results in abnormal SPECT scans, changes in the volume of various parts of the brain etc. This is all fascinating, but we're in danger of getting sidetracked here from the original discussion about the validity of the ME diagnosis. --sciencewatcher (talk) 18:38, 21 September 2008 (UTC)

We need sources rather than speculation; anon's link to an advocacy site isn't adequate per WP:MEDRS. WLU (t) (c) ^{(rules - simple rules)} 21:54, 21 September 2008 (UTC)

Classification: The fact that psychiatric illness has biological correlates says nothing about the categorical nature of CFS. The term "psychologise" seems fairly accurate to describe the assumption that physical symptoms are mental symptoms that are somehow "somatised" by CFS patients. Depression was classed as a mental disorder because the patients appeared to experience symptoms more in terms of thoughts and emotions; same with PTSD, whereas hypothetical classification of CFS as a mental disorder depends on assuming that all the dominating physical symptoms (and any biological findings) are immediate and/or chronic manifestations of psycho-emotional distress, which is historically and scientifically a poor argument. The CFS definition appears to be heterogeneous, so what happens to those patients who aren't primarily distressed/fear-avoidant/deconditioned?

Ms Mirza: Sciencewatcher, what are you saying exactly, that Sophia had herpes related encephalitis (which is known to occur), or that the observed inflammation had nothing to do with her condition, or that her inflammation was not typical of people with ME/CFS? As for herpes being more common in "CFS", it's possible that people who are suffering long-term effects of a previous herpes infection are lumped into a CFS diagnosis, or that ME/CFS pathophysiology is increasing the rates of herpes infection and/or allowing the virus to have a greater impact. Isn't this what advocates are saying, that Sophia's inflammation is an example of this?

_ Tekaphor (TALK) 04:30, 22 September 2008 (UTC)

Herpes infections are quite common in CFS, whether due to reactivation, or as a trigger for the illness. Anyway, the point is that if the inflammation was due to herpes then it isn't "ME" inflammation.

And I don't understand your comment about physical symptoms being "mental symptoms that are somatised". When you are under chronic psycho-social stress and your adrenal glands increase in size, blood pressure increases, immune system is downregulated and HPA axis is highly active, are these "mental symptom that are somatized"? It seems a very loaded phrase, assuming that the patient is imagining symptoms or consciously creating them, neither of which is the case. --sciencewatcher (talk) 14:51, 22 September 2008 (UTC)

It doesn't seem to me that advocates are claiming that everyone with ME specifically has dorsal root ganglionitis, rather that some sort of CNS inflammation occurs as a part of or a complication of the illness. The investigators didn't say they confirmed the presence of any herpes virus, only that the changes were "very similar" to that of an active infection. I understand your point though. More importantly, Sophia's case demonstrates how someone with ME/CFS can be labeled as a psychiatric patient and mistreated by medical professionals, only to get worse and die, with the autopsy (which had to be insisted upon) reveal substantial inflammation in the "gateway" for sensations entering the brain from the spinal cord. Surely the investigators have seen enough autopsies to know when tissue is "diseased" and comment on its significance.

As for the other comment, somatisation isn't about imagining physical symptoms or consciously creating them, and that wasn't implied. There are various interpretations and applications though, which would require a longer discussion (for free further reading, see: [25], [26], [27], [28], [29]). The fact that there are physiological responses to psychological states is obvious, but whether the psyche to soma reactions count as "somatisation" also depends on other interoceptive and cognitive characteristics (as well as investigator opinion). However, where is the line drawn between abnormal perception of physical sensations, physiological responses to chronic stress, and physiological dysfunction that is (or has become) largely independent from psychological factors? - Tekaphor (TALK) 13:07, 26 September 2008 (UTC)

Thanks, those references are very useful. One of the problems seems to be that somatization is poorly defined/understood and can imply a number of different etiologies. One of the studies says that only 1 in 4 of doctors are comfortable diagnosing SD, so it's no wonder patients end up confused and upset. Anyway, this discussion belongs in the psychosomatic article rather than here. When I have time I'll see if I can put some of this info into the article. Regarding Mirza there were reasons for her sectioning unrelated to her CFS/ME symptoms, but I don't think it's appropriate to discuss it here. --sciencewatcher (talk) 17:18, 26 September 2008 (UTC)

-

As mentioned below, RetroS1mone has moved all of "62.69.37.58"'s text in this section into one paragraph, but the paragraph now reads out of context. Perhaps the comments could be restored to their previous positions, with the sign on the end of each comment? For now I will just label the context, because of the established trend to post at the bottom. Thanks "62.69.37.58" for some excellent points, and the compliment. - Tekaphor (TALK) 15:17, 24 October 2008 (UTC) ...

On "psychologisers" being an accurate description: - Psychological illnesses are psychological. Only a few are known with any certainty to have a biological basis (e.g schizophrenia) but they usually present as overwhelmingly psychological, are still described and classified by WHO as psychological (F48)and treated by psychologists not e.g immunologists. There is no such certainty that all psychological illnesses have an organic basis; even the serotonin theory of depression has been disputed in reputable journals, and there are psychologists who dissent with the vogue for "bio-psychiatry" and the cultish CBT bandwagon which we are now told can cure unemployment and should be automatically given en mass to all school age children. A major cause of psychological distress is sociological rather than biological. Psychologiser can only be considered inflammatory if you think psychology is inflammatory. It's not but it can be used inappropriately (CFS is a case in point). I did not say psychological illnesses were "not real" if you please. The reality of a thing does not have to depend on biology. (Munchausens' is real but the symptoms are deliberately arranged by sufferers through other means.) Correlation is not causation. Psychotherapies cannot alter the structure of the brain because thought is a function, not a structure; what they can do is change behaviour with any knock-on effect that may entail. CBT also has a strong therapist effect and tends to be persuasive (which it is designed to do) and so participants may tell therapists what they want to hear (one CBT study found no objective improvement while patients reported they were able to do more). Anyway the important point is that ME is pathophysiological, i.e. a disease (and CFS is supposed to be the same as ME, we are told), so trying to reframe that as psychosomatic (e.g the "Disease Database"[30]) psycholo-gises it. Delusions or paranoia are not symptoms of ME but a raft of very visceral symptoms are, including biological exercise limitation which cannot be reversed through psychotherapy any more than MND or full blown AIDS can be. The refusal to adequately investigate or attempt to biologically treat a pathophysiological process is another sign of psychologisation. http://freespace.virgin.net/david.axford/psy-algy.htm[31]—Preceding unsigned comment added by 62.69.37.58 (talk)

Response to Sciencewatcher's statement about depression etc having biological correlates: - Not neccessarily; as I say depression can be sociological in cause. Society is the main cause of distress in the modern world. But depression is an umbrella term for many different potential causes. Since enthusiasm in the effects of antidepressants is wearing off is there any solid research showing definitive biological cause (as opposed to correlation) for depression? And what's wrong with depression being psychological - isn't refuting that just encouraging stigma against the psychological?) Anyway that's all as may be but even if biological cause for psychological illness is a fact, that doesn't mean the inverse is true and that all organic illnesses have a psychological cause (and psychological remedy).—Preceding unsigned comment added by 62.69.37.58 (talk)

On Tekaphor's post about Classification & Mirza: - Well said as usual Tekaphor, I wish we could clone you. —Preceding unsigned comment added by 62.69.37.58 (talk)

Response to Sciencewatcher's comment on Mirza's autopsy and herpes virus: - But that's not what the Inquest concluded, that's your POV spin on it. They did conclude that the concept of ME was born out, irrespective of Herpes. And we do not know for sure that a form of herpes is not implicated in ME, which you seem very sure of. HHV6a and HHV7 have been found in pwCFS.—Preceding unsigned comment added by 62.69.37.58 (talk)

Response to Sciencewatcher's comment on chronic stress: - YEs these are pretty much symptoms/findings somatised from anxiety (the psychological precursor). ANd ones that don't have much to do with ME or CFS: there is no evidence of enlarged adrenals , increased blood pressure, wholly downregulated immunity and over-active HPA axis; in most cases in fact, the opposite is found, or there is an inversion or dysregulation. There are a huge number of symptoms and findings which don't fit into the "wonky HPA axis (stress)" model.—Preceding unsigned comment added by 62.69.37.58 (talk)

Response to Sciencewatcher's comment on Mirza's sectioning: - Though it's possible there's something that hasn't been publicised but that you're aware of, I don't believe there was any reason to section her, and she was sectioned because of the severity of her physical state (i.e that it was not understood to be a biomedical rather than psychiatric issue) coupled with, apparently, her refusing to attend a clinic although that was her right. To be sectioned you have to be at very real risk of harming yourself or someone else (as I understand it). —Preceding unsigned comment added by 62.69.37.58 (talk)

-

Combined sections

Hi I combined pathophys and etiology bc they both said about the same thing we should look at the forks to see if they are the same. I think I will combine some other sections too. RetroS1mone talk 18:21, 21 September 2008 (UTC)

neuropsychiatric/psychiatric in nomenclature

Can we resolve this issue? Just to recap: Guido removed the word "neuropsychiatric" as it doesn't appear anywhere else in the article. I replaced it with psychiatric. Guido then removed that word too because no "authorities" have said they consider the illness psychiatric. I asked him which authorities have said the illness is metabolic or cardiovascular, as I'm not aware of any. Perhaps it would be better to replace "authorities" with "experts". What does everyone else think? --sciencewatcher (talk) 14:15, 15 October 2008 (UTC)

I think neuropsychiatric is OK, and the cognitive behavioral therapy seems it is the best therapy for CFS and that supports neuro/psych. It's not like that is only kind of CFS, CFS just means you don't know just what it is, so there is probably alot of different CFS illnesses and neuro/psych is just one. It is to bad some people have so much prejudice about mental illness that they wnat to shut up any one who mentions it and wants to help people get better, that means finding out what is really wrong not what we want to be wrong!! RetroS1mone talk 02:43, 17 October 2008 (UTC)

I think the issue can be resolved by rephrasing the list as factors to the illness, rather than as the nature of the overall "disorder". - Tekaphor (TALK) 07:22, 17 October 2008 (UTC)

There is no neuropsychiatric factor in CFS. The correct term is neuropsychologic. Guido den Broeder (talk, visit) 09:57, 17 October 2008 (UTC)

Neuropsychologic is a symptom/result, not a factor. Psychiatric is a factor. As far as I understand the word neuropsychiatric covers both neurology and psychiatry but isn't used much any more, so perhaps psychiatric is the best word to use as that is what is used in most of the CFS research. --sciencewatcher (talk) 13:48, 17 October 2008 (UTC)

There's no good evidence that CBT works for CFS, the studies are incredibly flawed. (This has surely been thrashed out here before.) Of course part of the problem is that psychiatrists find CBT as "difficult to define" as they do CFS. Psychiatric is not a "factor", to be so would mean psychosomatic illness, which is a differential. The factor is pathophysiological, the symptoms/results are biomedical and neuropsychologic (including neurocognitive or vice versa).—Preceding unsigned comment added by 62.69.37.58 (talk)

First of all, we're not talking about CBT here. It is a treatment, not a factor. And psychosomatic illness is not a differential. See here. It is actually a cormorbid condition (see the next page where it talks about "somatoform disorders". --sciencewatcher (talk) 14:06, 24 October 2008 (UTC)

ME vs CFS

Forgive a newbie butting in, but there are two UK surveys which may be helpful in solving the ME vs CFS dilemma.

The Gibson report was a UK Parliament report published in 2006: http://www.erythos.com/gibsonenquiry/Report.html. Here's a brief quote from the intro on nomenclature:

"1.1 What is CFS/ME?

Myalgic Encephalomyelitis 

Myalgic: Myalgia means pain in a muscle or group of muscles. Encephalomyelitis: ‘Encephalo’ refers to the brain; ‘myel’ to the spinal cord and ‘itis’ denotes inflammation.

CFS: Chronic Fatigue Syndrome • Chronic Persisting over a long period of time • Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. • Syndrome: the association of several clinically recognizable features, signs, symptoms, phenomena or characteristics which often occur together and when taken as a whole define a condition.

ME was the term originally given to this illness in the 1950s. Some assert that the pathology of the term ME as given above is inaccurate. Their view is that there is not enough research evidence available to draw conclusions on whether there is widespread inflammation of the brain and spinal chord in ME sufferers. This led to the more general term term CFS also becoming prevalent in the late 1980s. However, others feel Chronic Fatigue syndrome is not a suitable alternative term because of the absence of pathology in the title and because fatigue can occur as a symptom in many other illnesses. "

Many sufferers feel that the CFS term misrepresents their condition, because it does not describe the myalgic aspect - headaches, muscle aches, uzw. For this reason the Gibson report uses ME/CFS, and whilst I appreciate the difficulty some have with the oblique stroke, it is also my view that this is a less judgmental and more inclusive description.

The second, the NICE guidelines, http://www.nice.org.uk/Guidance/CG53, also settle on ME/CFS and suggest that health professionals:

"Consider the possibility of CFS/ME if a person has: l fatigue with all of the following features: – new or had a specific onset (that is, it is not life long) – persistent and/or recurrent – unexplained by other conditions – has resulted in a substantial reduction in activity level chara and/or fatigue (typically delayed, for example by at least 24 several days) and l one or more of the following symptoms: – difficulty with sleeping, such as insomnia, hypersomnia, unre sleep–wake cycle – muscle and/or joint pain that is multi-site and without eviden – headaches – painful lymph nodes without pathological enlargement – sore throat – cognitive dysfunction, such as difficulty thinking, inability to short-term memory, and difficulties with word-finding, plann information processing – physical or mental exertion makes symptoms worse – general malaise or ‘flu-like’ symptoms – dizziness and/or nausea – palpitations in the absence of identified cardiac pathology."

In other words, fatigue alone - chronic or otherwise - is not enough for a diagnosis. —Preceding unsigned comment added by Tishtosh20 (talk • contribs) 18:45, 21 October 2008 (UTC)

• Many sufferers feel that the CFS term misrepresents their condition, because it does not describe the myalgic aspect - headaches, muscle aches, uzw.

Perhaps more importantly, CFS does not describe the neurological, cardiovascular, metabolical and immunological aspects of the disease known as ME. It is nothing more than a set of symptoms and therefore, like 'chronic fatigue', diagnostically insuffient. Guido den Broeder (talk, visit) 21:24, 21 October 2008 (UTC)

All of it is in the article, it says sufferers don't like the name, it says there are neruological etc., it says ME is an alternating name. I am asking what is the point of this. RetroS1mone talk 02:59, 22 October 2008 (UTC)

And I am answering that the point of this is that CFS is not a satisfactory name for this article. Why not call the article 'yuppie flu'? - because that is pejorative. And so is the removal of ME from the description. —Preceding unsigned comment added by 79.74.230.62 (talk) 12:43, 23 October 2008 (UTC)

The article is not called 'yuppie flu' bc yuppie flu is not the name used in MEDRS. CFS is the name used in most MEDRS. I think if MEDRS used yuppie flu Wikipedia would have it to, even when people think it is pejorative. Some people and some MEDRS say ME, some people say post viral, ICD says post viral and benign ME. The article says about all of those. The article name gets changed when most MEDRS and the CDC and people start using ME not CFS. RetroS1mone talk 12:51, 23 October 2008 (UTC)

"... people start using ME" - people does not include the UK government then? I have quoted two official sources that use ME/CFS. Tha article quotes several others, including the Canadian which use ME/CFS. I don't understand why there is such a big objection to it. Is it that CFS is a North American term and ME European? OK then let's use ME/CFS Tishtosh20 (talk) 16:05, 23 October 2008 (UTC)

Retro, as I said before: even more sources use the word 'cancer'. So how come the article has not been renamed thus? Or why aren't all Wikipedia articles simply named 'thing'? Would it not be an idea to use CFS for an article about CFS, cancer for an article about cancer, ME for an article about ME, and so on? Guido den Broeder (talk, visit) 17:05, 23 October 2008 (UTC)

This has been discussed extensively. New editors should review the talk page starting at #Changes and particularly at #ME or CFS. Lacking new sources indicating the majority of scholars prefer the term ME, it is undue weight and original research to decide that ME is the preferred term. ME and CFS are used synonymously, I have yet to see anything convincing that states the two conditions are separate. The most explicit is the CDC web curriculum, but that's insufficient to re-write all the pages covering CFS on wikipedia. WLU (t) (c) ^{(rules - simple rules)} 17:23, 23 October 2008 (UTC)

And because you are unconvinced, we have an unresolved dispute. This means that either the article remains tagged forever, or that we find a way to resolve this dispute. Guido den Broeder (talk, visit) 22:00, 23 October 2008 (UTC)

No, because no convincing references have been found to support your point, and you refuse to acknowledge this, the dispute lingers for everyone but you. WLU (t) (c) ^{(rules - simple rules)} 22:10, 23 October 2008 (UTC)

Guido is confused I think about what WLU is unconvinced, that the two are separate so, default they are the same. Even Malcolm Hooper says that, just thinks ME is a better name. The literature is the same since CFS got introduced in 1987 there are like 30 articles or some thing that used ME and not CFS and just one this year. There's more using ME/CFS like they're interchangeable and lots lots more like CFS is preferred term and ME is alternate. Not a personal attack Guido but you are so out of mainstream and as a ME activist you should think about why your doing this. The tag is giving undue weight on a position so far out it does not have reliable sourcings. RetroS1mone talk 22:15, 23 October 2008 (UTC)

Remove tags

There is a dispute tag and a source tag, I think they were both added from Guido. Tags aren't for people to slap on stuff when they don't like. Can we take the tags off pls? At least the source tag, this has 120 sources every other word is sourced!! C'mon now! RetroS1mone talk 03:02, 22 October 2008 (UTC)

There's also a disute tag in the nomenclature section which probably needs to be removed. See the discussion above regarding neuropsychiatric/psychiatric. --sciencewatcher (talk) 14:13, 22 October 2008 (UTC)

Since in your complete and utter ignorance you have already thrashed all the pages and are threatening to continue on that road: let's leave the tags, shall we? Guido den Broeder (talk, visit) 18:41, 22 October 2008 (UTC)

Please try to be WP:CIVIL Guido. Thx. RetroS1mone talk 00:53, 23 October 2008 (UTC)

Sorry Guido I took out your tags again it looks you are the only person that wants them. Pls get a consensus before you put tags on article again, thx. The sources say psychological factors can influence CFS and CBT is effective, that's not me, it is the sources and so your real problem is with the sources not the article, so a disputed tag is not appropriate. Source Tag? For stuff w/o source that you think is contraversial put a citation needed tag next to it don't tag the article like it doesn't have 120 sources all ready. Thx RetroS1mone talk 12:00, 23 October 2008 (UTC)

You misunderstand the purpose of the tags. They indicate the existence of a dispute. If there were consensus, there would be no need for any tags, but we could simply edit the text. Guido den Broeder (talk, visit) 14:46, 23 October 2008 (UTC)

The "refs" tag is removed by me. There are two citations needed, all the rest is amply sourced. The tag at the top was overkill. As for the POV tag, please explain clearly what the problem is and what your preferred solution wouldbe, and accept that if consensus is against you, the POV tag can be removed. We don't keep a POV tag on an article as long as anyone disagrees with it (or parts of it), otherwise many more articles would have these tags. POV tags are needed when there is a genuine undiscussed dispute where more attention is needed to form a consensus. Once the discussion is over, the POV tag can be removed. If that still is not to your liking, you can go to the next step of dispute resolution, which would be a request for comments on the article. Fram (talk) 15:05, 23 October 2008 (UTC)

I have reinstated it. I did not want to fill the page with inline tags since that would make it unreadable, but I've placed a few to show why the tag is still there. As for the NPOV tag: this has been discussed ad nauseam already. We are waiting for the opposing side to accept that there is a need for dispute resolution. As soon as that is recognized, we can begin the process. My preferred solution? To go back to the version before RetroS1mone started editing the CFS articles, to finally allow an article on Myalgic Encephalomyelitis, and in general for Wikipedia to give more say to people who are knowledgeable about a topic rather than to people with the most free time. Guido den Broeder (talk, visit) 15:13, 23 October 2008 (UTC)

Hooray, Guido! Someone talks sense at last. Tishtosh20 (talk) 16:03, 23 October 2008 (UTC)

The ad nauseum discussion has resulted on the agreement from all regular editors except Guido,

And me at least, please don't distort the picture of what editors think. 62.69.37.58 (talk) 02:59, 24 October 2008 (UTC)

that CFS and ME are the same condition, and therefore there's no dispute over the naming. That issue was settled. Other POV disputes could include whether there is a psychological component to CFS. Going through Guido's edits (my diff used 'cause I undid two edits),

1. CFS and ME are two names for the same condition; previous discussion has established this, and that CFS is more common.

They are not and as evidence of this your assertion that they have differing prevalences neccessitates they are capable of being differentiated.

1. CFS is poorly understood, does anyone dispute this? If so, why? Who has a sufficiently good understanding of the etiology that they can successfully treat CFS?

Cheney, Hyde, Enlander, deMerlier et al are not doing too badly all considered, on all but the most complex and severe cases. Of course when you say success I take you to not mean cure, as very few other chronic illnesses are actually curable, but much more can be done than sleep/pain/CBT/GET.

1. Who states CFS is a single disorder? Who states that it is several? If prominent adherents can be found for both, then the sentence that it's a disorder or disorders is valid.

Most believe CFS as technically interpreted (ie. pre-empirical CDC style) is heterogenous. The difficulty is many researchers have their own pet theory and selection methods, concentrating more or one or other subgroups. Gene expression correlation with subgroups validates heterogeneity. The empirical definition may be moving the net towards a large but more homogenous PTSD-centric misdiagnosis.

1. What is the etiology? Has any research conclusively demonstrated it's cause?

In replicable terms, Rnase L related studies may be the most established, with e.g. enterovirus still tantalising.

1. Trivial exertion - is "trivial" present in all systems? Is it present in some?

probably not but I think it's in a majority of main systems(?) There has to be something that distinguishes the DX from burnout.

1. Fatigue present for six months - the lead states that most criteria require this. Are there some that do? Are there some that don't?

Most if not all the CFS ones do, the ME definitions don't (except Carruthers et al).

1. Idiosyncratic presentation of symptoms - this seems to be true [32], I'll reference it.

Not sure what's meant by usage here.

1. What medical test is widely accepted as diagnostic?

None yet widely

1. What aspects of the disorder are not controversial?

That research is underfunded, perhaps, but then it gets controversial as to what type of research.

1. CFIDS is easily sourced [33].

The shotgun tagging is somewhat silly - it bloats the lead with ugly tags, and requires extra citations to be placed in the lead. Citations should be in the body, and the lead should summarize, ideally with no citations. If the lead doesn't summarize the body, it should be adjusted. If the lead does, but the body is not sourced, tag the areas in the body or find citations to back up the statements. The large number of sub-pages passes the buck from the main page to the sub page in many cases (appropriately or not I'm not sure), but if someone in good faith puts a tag up, and it's sourced adequately in a sub-page, then common sense suggests taggin it is unnecessary. For instance in this case, it is now sourced in the alternative names page. WLU (t) (c) ^{(rules - simple rules)} 18:07, 23 October 2008 (UTC)

Ok everyone please take a breath and try to talk to each other nicely, 'nicely' being the objective here. I just looked at the article and someone is definitely trying to make a WP:POINT with all the tags inserted. Surely not all those tags are needed. Please revert them out of the article except in places where they are actually needed. This looks silly to me to have this kind of point being made this way. The tags are to be used to help locate problems that need help not to make the article totally unreadable and a mess. The discussion about calling this article what it is has been discussed completely and at the time everyone, well almost, agreed that the article should go by the known name of CFS. If editors have been diagnosed with this illness, maybe stepping away is a good thing to do. I try to just do maintenance at the Crohn's disease article and other articles close to it do to my strong POV on it. But please, remove the tags and talk it out on the talk page. The way it is being done now is not the Wiki way. Thanks, --CrohnieGal^Talk 17:45, 23 October 2008 (UTC)

Apparently, the fact that we have a dipute is still ignored, so the main tags are very necessary. Wikipedia policy forbids their removal. We can't have a situation that we first need dispute resolution to establish that there is a dispute.

I already said myself that the inline tags were not necessary in my opinion; the main tags suffice, but that requires that people no longer claim that they should go because inline tags are missing. Guido den Broeder (talk, visit) 21:36, 23 October 2008 (UTC)

WLU and Crohnie answered your objections above. RetroS1mone talk 21:57, 23 October 2008 (UTC)

1. CFS and ME are two names for the same condition; previous discussion has established this, and that CFS is more common.

   They are not, neither is it possible for a discussion by Wikipedia editors to establish anything of the sort. Decisive is the WHO.

2. CFS is poorly understood, does anyone dispute this? If so, why? Who has a sufficiently good understanding of the etiology that they can successfully treat CFS?

   CFS is a list of symptoms. This is extremely easy to understand, and most people do.

3. Who states CFS is a single disorder? Who states that it is several? If prominent adherents can be found for both, then the sentence that it's a disorder or disorders is valid.

   Perhaps, but where indeed are these sources?

4. What is the etiology? Has any research conclusively demonstrated it's cause?

   Another good question. Where are the sources either way? There were a few in the article before, but they have been removed. The question can, however, only be answered in full in an article about ME. CFS is a working definition for ME and therefore ME's etiology is CFS's etiology.

5. Trivial exertion - is "trivial" present in all systems? Is it present in some?

   What is this concept 'trivial exertion'? Is it defined somewhere? If not, it's a weasel word and should go.

6. Fatigue present for six months - the lead states that most criteria require this. Are there some that do? Are there some that don't?

   Not even the Fukuda criteria require the symptoms to be present for six months, and neither do e.g. Holmes, NICE, any definitions of ME, etc.

7. Idiosyncratic presentation of symptoms - this seems to be true [30], I'll reference it.

   I'll check the reference.

8. What medical test is widely accepted as diagnostic?

   Bicycle/tredmill tests, and neuropsychological tests.

9. What aspects of the disorder are not controversial?

   E.g. that it can be severely debilitating.

10. CFIDS is easily sourced

    That may be, but is it an altenative name for CFS? No. It's an alternative diagnosis.

Please note, that this is just a tiny part of the dispute. Guido den Broeder (talk, visit) 22:37, 23 October 2008 (UTC)

Change Canadian definition to more accessible CDC?

I think we should change the Canadian definition in Signs and Symptoms to CDC, the CDC website is more accessable in all ways. Also the Canadian definition is in Journal of CFS that is not on medline. And they are almost identical really. What do you think. RetroS1mone talk 15:40, 22 October 2008 (UTC)

No. Guido den Broeder (talk, visit) 18:50, 22 October 2008 (UTC)

No A CFS journal is at least as good a source for CFS as anywhere else.—Preceding unsigned comment added by 62.69.37.58 (talk)

Yes, I agree. The CDC is a better source than a CFS journal, more people use the CDC definition than the Canadian one, and as you say the website is more accessible. And we shouldn't have to "infer" the symptoms from the definition. --sciencewatcher (talk) 22:00, 22 October 2008 (UTC)

OK lets change it. RetroS1mone talk 00:54, 23 October 2008 (UTC)

Let's not, this page isn't yours and SW's pet project you know, it would be good to get others opinions on big changes first.—Preceding unsigned comment added by 62.69.37.58 (talk)

Perhaps we can cut a few corners and make this page a redirect to mass hysteria, since that is even easier to access. Guido den Broeder (talk, visit) 15:18, 23 October 2008 (UTC)

The shonky "DiseasesDB" already conflates CFS with Somatisation, Psychosomatic illness, Briquets, et al. They appear to disagree violently with WHO. Someone should tell them that even "poorly understood" is not synonymous with psychogenic or somatisation, which is reaching.—Preceding unsigned comment added by 62.69.37.58 (talk)

The CFS journal isn't a medically reliable source from my knowledge, my preference would be to mostly use it to flesh out controversies, history and the reactions of patient groups and advocates. CDC may be more accessible, but the most important thing is which source and definition best represents the current medical consensus? CDC is American, the best is the one with the most acceptance world-wide. That's a judgement call, or something best settled by sources. Hooper might be a candidate since it's recent and a review, but it's release-withdrawal controversy means it should be used carefully. It's also not cited that much considering it was originally published in 2006. On the other hand, this states quite explicitly "The US case definition of CFS (the CDC-definition) is most widespread in research and clinical practice". Gotta love explicitness. WLU (t) (c) ^{(rules - simple rules)} 17:40, 23 October 2008 (UTC)

WP is an encyclopedia, not a medical journal, and as long as it maintains as much accuracy as possible can and should cover more aspects of a topic than simply one single journal would; to do otherwise is to censor knowledge. It's also an encyclopedia that's never finished (and in the case of some articles barely started) so anyone who relies on it for e.g. treatment info is very foolish indeed. This would all seem particularly germaine for a "contested", "poorly understood", "controversial" and under-researched subject. —Preceding unsigned comment added by 62.69.37.58 (talk) 03:30, 24 October 2008 (UTC)

It may be explicit, but it is not correct. The Fukuda definition (it's not CDC's) is not a clinical definition. The Canadian consensus definition is. Not for CFS, but for ME/CFS. So the two are different entities and the one cannot replace the other. Guido den Broeder (talk, visit) 21:41, 23 October 2008 (UTC)

You call it the Fukuda definition bc Fukuda was the first author on a paper. That definition was adopted by the CDC. So now you can call it the CDC definition. The source, a review calls it the CDC definition, that def is "case definition", most used in clinical practice. Guido, Wikipedia is based off sources. And usually reliable sources instead from sources that are not at medline like JCFS. RetroS1mone talk 21:49, 23 October 2008 (UTC)

People call it the Fukuda (or 1994) definition to differentiate it from the Holmes et al CDC definition in discussion. There's also a newer empirical definition by Reeves et al. So just saying "CDC" isn't enough to let people know what you mean... unless you're obviously a fan of one of them.—Preceding unsigned comment added by 62.69.37.58 (talk)

The source is wrong. Medline by itself does not make a source reliable; by Sturgeon's law, 90% of everyting is rubbish and this holds for medline sources, too. Similarly, non-medline sources are not by definition unreliable. Guido den Broeder (talk, visit) 21:56, 23 October 2008 (UTC)

Well we go by Wikipedia guidelines not Sturgeon's law and WP:MEDRS says high quality journals are better sources. So non medline journals are less reliable than medline journals. JCFS is may be a great publication but, you are putting it against the most widely used definition, originally from literature (Fukuda), endorsed by the US CDC, available on a government website. I mean, we could say the definition from the Canadian group exists but its not a big contest what gets more weight. RetroS1mone talk 22:03, 23 October 2008 (UTC)

It may be endorsed by the CDC but the CDC do not rule the entire world's medical affairs.There is no reason to believe J CFS is any less reliable than the much criticised National Inst for Clinical Ex. (NICE) which also has its pet definition. Goverments are political not medical.—Preceding unsigned comment added by 62.69.37.58 (talk)

And as a guideline, that is correct. A guideline is not a law, however. Every instance should still be judged on its merits. A consensus definition by leading experts carries sufficient weight no matter where it is published, as is apparent from the many times it is quoted.

You still ignore my point that they are two different entities and therefore which one is most often mentioned is not relevant. (Neither is which one is newer, another random measure but with the opposite outcome.) Guido den Broeder (talk, visit) 22:09, 23 October 2008 (UTC)

Well we can change it back, just provide a good source, says the Canadian group's definition is more influential then the CDC. And give a reliable source, says ME is different from CFS, and that can get a sentence. RetroS1mone talk 22:18, 23 October 2008 (UTC)

As to the first: that is not the issue here, see above twice.

As to the second, these sources have already been pointed out to you several times by various users. They include the WHO and the CDC. Guido den Broeder (talk, visit) 22:40, 23 October 2008 (UTC)

Undent. All of these have been found (repeatedly) unconvincing. Perhaps in a month we can seek a request for comment on it, but I think that's absolutely ridiculous and unnecessary. Clear, explicit, reliable sources are far more convincing to me than vague assertion and old sources that are contradicted by more recent ones. WLU (t) (c) ^{(rules - simple rules)} 01:07, 24 October 2008 (UTC)

section break

The abridged version of the Canadian guidelines clearly lists 8 categories, but changing "inferred" to "according to" sounds like too much hard work (pun intended). Laughing "with" (not "at") Guido's statement about hysteria! This article is supposed to be about ME/CFS in totality, yet we are limiting it to the CDC-1994 criteria on CFS? It makes some sense to use a broader range of symptoms because the ME/CFS construct goes beyond the CDC (just ask those who dismiss the CDC's position that CFS is not ME). There are many different definitions and overall there are more symptoms than the CDC list, which itself is over-represented by a previously assumed chronic Epstein-Barr infection. At Wikipedia we are supposed to view ME and CFS as equivalent, yet totally ignore everything about ME including symptoms not part of the current CDC-CFS list? If they are equivalent, then ME must be integrated, not simply ignored; at least the Canadian criteria has attempted to integrate symptoms attributed to both CFS and ME, basing them on experience with roughly 20 000 patients. - Tekaphor (TALK) 02:29, 24 October 2008 (UTC)

Per WP:UNDUE, the page should discuss all major contributions to the guidelines and whatnot to the degree discussed in reliable sources. If most use the CDC, it should lead the section, but if a significant minority use the Canadian guidelines then it should be discussed though with less text and detail than the CDC. The greatest problem I've run into is finding a reliable, current source that discusses how ME is different from CFS. Without a reliable source clearly and explicitly describing the differences between ME and CFS, we are simply left treating them as synonyms unless we engage in original research, which we can't do. We can't make these distinctions ourselves, but we can cite those who do it for us. Tekaphor, please help us do as you suggest - if you can find and report sources that make these distinctions, then we can place them on the page. The controversy and disagreements should be documented! Carruthers is on the page here, but as it is published in the JCFS we have to be careful about using it. Re-publication, extensive discussion or its use in studies published in JAMA or NEJM or the Archives of Internal Medicine would go a long way towards establishing it having significant acceptance. Another issue is how Clinical descriptions of chronic fatigue syndrome deals with the issue - that is the appropriate page to give the most text and detail to disagreements and discrepancies between the different definitions. Here should be a quick summary and that's it. Everything I've seen urges me to see this as a gap between what editors believe and what scientists report, but this could very well be a flaw in which studies have been cited on the page to date. If that is the case, presenting recent, prominent and reliable studies is the single most useful act that any editor can take. WLU (t) (c) ^{(rules - simple rules)} 14:50, 24 October 2008 (UTC)

The overall point about the symptoms list wasn't really about ME vs CFS or even the Canadian guidelines, but about the symptoms of ME/CFS going beyond any single criteria. I'm assuming that the 8 categories found in the Canadian guidelines was originally used in the article partly because it covers a broad range of symptoms whereas actual diagnosis was a separate section (for example, autonomic symptoms are often discussed and researchered, but aren't mentioned in the CDC-1994 criteria list). Additionally, keeping in mind that the CFS articles used to be a single page only, the symptoms section allowed for expansion about each symptom and related research, but now that's gone. If the CDC-1994 criteria is to replace the symptoms list, there should at least be a mention of other symptoms; there is something to this effect already in the lead: "CFS patients may report many symptoms which are not included in all diagnostic criteria,[4] including ... " etc. The subsection for the Canadian guidelines on the clinical descriptions subpage should be expanded (it's currently nothing but a short sentence). What do you think? - Tekaphor (TALK) 16:28, 24 October 2008 (UTC)

Unfortunately I think I don't know enough about CFS to give an informed opinion. Fortuantely I do know enough about wikipedia to offer something. We shouldn't be using what categories we feel are appropriate, we should be citing what other people have said are categories, and the problems with them. Given the multiplicity of definitions are, my best suggestion would be to cite all the "core" symptoms of the different definitions, with the statement that all are common. From there a brief list of those on each definition could be created. Alternatively, a table could be used:

Criteria name	Fatigue	Viral infection	Purple toes	Curly hair	Other	Notes
Fuduka	X	X	X		Sweet tooth	Most common criteria
CDC definition	X		X		Hairy eyeballs	Common in the US and Mexico
Dunham et al.	X	X	X	X	Black tongue	Preferred by patients

The advantage the table allows is it shows common criteria and allows extra criteria to be included in "other". However, we'd have to be very careful that this is very close to what the actual sources say. The thing is, there may be a TRUTH about CFS that is "out there", but until the scholarly establishment decides this, it can't be "in here" because we report verifiability, not truth. Overall, I think if you can source it, we can work with it. We can't say "CFS is all or none of these things", but we can say "CFS has been called many different things by many different people." But again, WP:UNDUE says we do so to the extent that the mainstream agrees and unfortunately that's very much a matter of editor judgement. I agree that if it's significant it should be discussed, but I can not say that I know what is significant or not. I would rely on the medical expertise of other editors who I trust to give their opinions (I'll name names if I have to). WLU (t) (c) ^{(rules - simple rules)} 18:55, 24 October 2008 (UTC)

Thanks for the interesting suggestion. - Tekaphor (TALK) 10:41, 25 October 2008 (UTC)

If I use these indents wrong, someone please tell me. AS to the above suggestion, I think this is an excellent idea. Ara Pelodi (talk) 22:29, 29 October 2008 (UTC)

Myalgic encephalomyelitis archive

Note that I have redirected the talk:ME page to this page, and placed its contents in the archive of this page (it's in the second archive box at the top of the page). WLU (t) (c) ^{(rules - simple rules)} 17:28, 23 October 2008 (UTC)

Right. Create more misinformation. Hide it from the readers. Keep them coming, guys! Guido den Broeder (talk, visit) 21:43, 23 October 2008 (UTC)

As far as I know, talk pages should not be turned into redirects. I've changed that into a normal link. Guido den Broeder (talk, visit) 23:20, 23 October 2008 (UTC)

I don't see the point in having a talk page for an article that is a redirect, but hey I'm not an expert in wikipedia policies. --sciencewatcher (talk) 23:59, 23 October 2008 (UTC)

Placing a manual redirect is less useful than a direct redirect, but I agree a redirect to the actual archive is one of two good options for the page. I've turned the ME talk page into a redirect for the talk:CFS sub-page for ME and placed a note at the top to indicate editors should seek consensus before recreating the talk page. WLU (t) (c) ^{(rules - simple rules)} 00:47, 24 October 2008 (UTC)

Confusing responses

There is an anon IP interspersing responses to other's comments without signing. This page is starting to become unreadable and difficult to follow because of this. Would the IP please gather up his/her responses together and post them separately at the bottom of the sections and remove the older responses out to make it more readable? I am having a real hard time understanding others views here with comments inside of others comments without any signature to show a change in editors. I would think that WP:Talk should maybe be reread so that the editor realizes the proper way to respond to talk page discussions. I wouldn't even know where to begin to clean up this page for readability at this point with all the new comments being made. I would appreciate anyones help with this matter so that I can catch up on comments here and be able to comment myself on what is being said and by whom. A comment has already been made to the IP about this but so far it seems to be ignored. Thanks, --CrohnieGal^Talk 14:08, 24 October 2008 (UTC)

I initially read the responses using a differential. RetroS1mone's job since then at adding signs was helpful, except for lumping some of the text into one big paragraph, which after re-reading has become distorted in the flow of the text and points made. I will try to give it context. - Tekaphor (TALK) 15:08, 24 October 2008 (UTC)

Thank you to both of you, it's much appreciated. --CrohnieGal^Talk 16:01, 24 October 2008 (UTC)

Note RSN discussion

Question about Haworth Press and the Journal of Chronic Fatigue Syndrome. I recall it not being a reliable source but not why, so I've asked there. Anyone able to inform, please do so. WLU (t) (c) ^{(rules - simple rules)} 13:06, 28 October 2008 (UTC)

Of note for the use of the Journal of Chronic Fatigue Syndrome - RSN diff. That dovetails with my vague knowledge of the journal. I would cautiously endorse its use in sourcing statements for the minority positions, but that requires consensus. My thinking is that the best way to use JCFS would be to give an accurate description of the minority poisiton, not to counter what the more reliable sources say. WLU (t) (c) ^{(rules - simple rules)} 14:18, 3 November 2008 (UTC)

Suggested Adjustments to CBT Portion

I'm not going to make these edits myself. This page appears quite vociferous so I'm going to suggest these edits and if one of the more seasoned people sees them as reasonable they can make the edits. I may change my mind later, but I'm just not experience on hear enough yet to decide to go there.

It currently reads: Psychological therapy

Perhaps the most effective management strategy for CFS is cognitive behavioral therapy (CBT),[46] a form of psychological therapy. A meta-analysis of 15 randomized, controlled cognitive behavioral therapy trials with 1043 participants concluded that psychological therapy had significantly better results than standard therapies of CFS. In this analysis, CBT also worked better than other types of psychological therapies.[47] CBT has special value for treating medically unexplained symptoms (MUS) like CFS according to Deary et al. who write, "a broadly conceptualized cognitive behavioral model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value." [48]

• Issue one: The first citation does not speak to CBT being the most effective management strategy for CFS. It speaks to whether care provider's negative attitudes of CFS will prevent them from referring patients to CBT. It does praise CBT but doesn't make the claim that it IS the most effective management strategy or even perhaps is, for CFS. The praise is instead footnoted from another article already cited in this paragraph. "Cognitive behavioral therapy (CBT) has proven to be an effective treatment for CFS [2,3] [ 2, 3]"

**Recommendation: remove this citation unless talking about provider attitudes on prescription of CBT

• Issue two: Phrasing "Perhaps the most effective management strategy for CFS.." is inappropriate and misleading when compared against citations provided. Citation 46 does not make this claim. Citation 47 (untitled in the citation section) compares CBT only against psychological therapies, not all or most management strategies for CFS. Sources for the review were drawn primarily on these search terms :a)Depression, Anxiety and Neurosis

CCDANCTR- Diagnosis = chronic fatigue syndrome and Intervention = *therap*’. CCDANCTR-References was searched on 28/3/2008 using the terms Full-text = fatigue or CFS

This indicates that the majority of studies pulled for evaluation would be related to articles with a psychological slant to the condition and that the inclusion of fatigue deviates significantly from having results that can be accurately applied to a predominantly CFS population. (Other indications in this review indicate that the criteria net was cast too broadly. This was done for a reason, but not one that causes accurate extrapolation that this is perhaps the best therapy for CFS.)

The point is, the comparison strategies and slants is psychological, not all or most strategies and non-psychiatric therapies. The article primarily evaluates CBT in CFS for relief in fatigue. Secondary evaluations were for the most part inconclusive and were primarily trained on psychological or psychosocial factors, not on other treatments(slash)outcomes. The conclusion drawn based on CBT and impact on physiological functioning demonstrated no statical impact. The conclusion drawn on impact of CBT and improved occupational outcomes was that there was not a statistical improvement. The point is, usual therapies (not including formal directed psychological therapies) are just as effective as CBT, thereby negating the statement that it is perhaps the best management tool for CFS. Specific non-psychological therapies are not addressed at all.

The only claim that this article makes demonstrating improvements is in the areas of fatigue and psychological distress. The claim to 40% improvement in clinical outcomes as opposed 26% in "Usual Treatment" is based on 4 of 15 studies examined. For reduction in severity of fatigue improvement is only seen in 4 of 15 studies. Improvement in Depression, Quality of Life and reduction of psychological stress was not significant. Only when compared against the strides of other psychological treatments specifically did any improvement show in fatigue and psychological distress and that must be noted that it is a comparison of success of psychological treatments, NOT an overall comparison of improvement against other treatments or overall measure of improvement gains to be had from the untreated patient to the patient treated with CBT. An example would be to say I have less gangrene in my leg because I cut to the ankle as opposed to the toe in other treatments and have it misinterpreted as cutting to the ankle is the best management strategy, completely ignoring antibiotics, cleansing etc.

The authors themselves, in their conclusions say "....physical functioning, depression, anxiety and psychological distress symptoms were also more reduced when compared with other psychological therapies. However at follow-up, the results were inconsistent and the studies did not fit well together, making it difficult to draw any conclusions. "

And notes "Very few studies reported on the acceptability of CBT and no studies examined side effects. Only two studies compared the effectiveness of CBT against other treatments, both exercise therapy, and just one study compared a combination of CBT and other treatments with usual care. More studies should be carried out to establish whether CBT is more helpful than other treatments for CFS, and whether CBT in combination with other treatments is more helpful than single treatment approaches."

Without examining follow up, side effects and adverse effects, nor single/non psychological treatments specifically as opposed to usual care, this citation can not be used to make the case that CBT is perhaps the best treatment for CFS. It can only be stated that CBT is a superior treatment when compared to other psychological therapies in reducing fatigue and psychological distress. This statement is already made effectively further down in the paragraph.

The authors of the cited study also state "Currently there is a lack of available evidence on the effectiveness of CBT as a atand-alone intervention or in combination with other interventions compared with usual care or other types of treatment (including immunological therapies, pharmacological therapies, exercise, complementary/alternative therapies and nutritional supplements) for CFS."

As well as "CBT may [emphasis added by me] be an acceptable form of treatment for CFS, although this evidence is currently based on a small number of individual studies."

Furthermore, these studies indicate that increased psychological distress is as a result of being ill with CFS as opposed to psychological distress causing CFS. Psychological profiles and levels of distress were compared against MS (an illness with similar symptoms), Major Depression, and healthy profiles. *this is included to support the recommended change in phrasing below)

EXAMINATION OF CLONINGER’S BASIC DIMENSIONS OF PERSONALITY IN FATIGUING ILLNESS: CHRONIC FATIGUE SYNDROME AND MULTIPLE SCLEROSIS; Journal of Psychosomatic Research, Vol. 47, No. 6, pp. 597–607, 1999

and

Depression in fatiguing illness: comparing patients with chronic fatigue syndrome, multiple sclerosis and depression. ;Journal of Affective Disorders 39 ( 1996) 2 I-30

**Conclusion: This statement based on citation is patently untrue "A meta-analysis of 15 randomized, controlled cognitive behavioral therapy trials with 1043 participants concluded that psychological therapy had significantly better results than standard therapies of CFS." The intro phrase " Perhaps the most effective management strategy for CFS is cognitive behavioral therapy (CBT)" Is unsupported by cited evidence.

• • Recommendation:

1. Remove phrase "Perhaps the most effective management strategy for CFS is cognitive behavioral therapy (CBT)..." and Replace it with "Another management strategy for fatigue and psychological distress caused by CFS is cognitive behavioral therapy (CBT..."

1. Delete and Merge: "A meta-analysis of 15 randomized, controlled cognitive behavioral therapy trials with 1043 participants concluded that psychological therapy had significantly better results than standard therapies of CFS." and "In this analysis, CBT also worked better than other types of psychological therapies." to "A meta-analysis of 15 randomized, controlled cognitive behavioral therapy trials with 1043 participants concluded that CBT had significantly better results than other types of psychological therapies."

1. Include above two articles in citation of this paragraph

Ara Pelodi (talk) 20:57, 28 October 2008 (UTC)

(oops it autobot signed it for me before I could go back and correct my mistake of not signing)

I agree the first ref should probably be changed/removed. Perhaps the person who originally put it in can comment here, or change it.

One thing to note is that CBT and GET are the only treatments (psychological or otherwise) that have shown any promise at all. This is discussed in the management sub-page, but perhaps it would be good to repeat it in the CFS article itself. --sciencewatcher (talk) 21:11, 28 October 2008 (UTC)

If CBT and GET are the only treatments that show promise (I disagree and am sure I could find some good studies on medlinhe/pubmed on that) then the citation should reflect that. The citation does not. The statement is improperly cited, and if the citation is removed is uncited. I suggest that statement is one of opinion. Though I respect opinion, it appears on this board that opinion of nonpsycosomatic etiologies and treatments as well as evidence not thouroughly vetted is routinely rejected. Thus I would have to reject your opinion as basis for leaving it in. :) Could you point me over to the management sub-page where this is discusses? Perhaps it could enlighten me or I can contribute.

Ara Pelodi (talk) 21:53, 28 October 2008 (UTC)

I'm not saying it should be left in (or removed). I'm pretty sure that ref was added recently, so I'd suggest whoever added it should take a look at it and the unsupported text. here is the management page. It seems a pretty good review that says that CBT and GET are the only treatments with promise. But even these treatments aren't terribly effective, and this (I think) is already pointed out in the relevant parts of the articles. I'd also suggest you look through the treatment sub-article too. You are welcome to make changes, but bear in mind that there have been a lot of edit-wars on this article, so it's generally a good idea to discuss any major changes on the talk page first (as you have done here). --sciencewatcher (talk) 21:59, 28 October 2008 (UTC)

Thanks for the link. Don't worry I won't make any changes to articles, at least at this point, if ever. ;) I'm not into warring with anyone. Overall I think this is an excellent article on CFS. I can only present my logic and understanding and let others take it from there. Thanks again! Ara Pelodi (talk) 22:12, 28 October 2008 (UTC)

Thanks Ara Pelodi but there are 15 studies reviewed in the Cochrane review, there isn't another therapy psychological or any thing else right now with results like this. They are not like 100% but the British groups talk about so much as 70% of people do better with the therapy. Success of CBT does not mean psychological factors are the cause of CFS, the old idea about a psyche/soma divide is out-dated any way, like Wessely says in the new york times interview. RetroS1mone talk 01:41, 29 October 2008 (UTC)

Hi, I believe you entirely miss my point. :) There are in fact 15 studies in this article. However this article does not support the conclusions drawn in the CFS article in wickipedia. The CFS article states this is the best management therapy of all treatments. The source cited does not say this in the slightest. It also does not quote the 70% number. Regardless of the psych soma divide, this article does not say that it is the most effective management tool of all therapies. It does not compare against anything but usual therapies ans psychological therapies, and has no statistical improvement in occupational improvement, quality of life improvement etc when compared to usual therapies, if you go back up and review my statement. This article only provides evidence that CBT is more effective than psychological therapies as a management tool in reducing fatigue and psychological distress. It does not talk about the degree of fatigue, fails to assert that it positively manages other life factors, nor compares positively. The changes I suggested are an accurate reflection of the evidence presented. Maintaining the statement as is, is misleading when compared against the cited evidence. The statement that it is the best management therapies of all therapies based on this citation is false. Only the statement that it showed improvement in certain areas compared to psychologial therapies is upheld.

Also, of the 15 studies reviewed there wasn't consensus across the studies as to efficacy in any area. Only in four of them. The review itself says (if you read the full text, which I did) that comparison against other therapies were done in other reviews, but not this one. This review, by authors statement, was unable to make conclusions based on its 8 objectives and even those were limited in scope. I still maintain that the statement made in the Wiki article is not supported in its current form and needs to be adjusted. You may feel that British groups talking about 70% improvement is enough to maintain it in the article. I would assert that that is just as much a personal statement at this point as saying management of candida is a successful management therapy, or that CFS/MS are different/same illnesses. To keep it NPOV using this citation it has to accurately reflect the citation. Which it does not.

The changes I suggested accurately reflect the evidence. The current statement does not. Thanks RetroS1mone! Ara Pelodi (talk) 20:55, 29 October 2008 (UTC)

Suggestion: replace "standard therapies" with "usual care", as that is what was compared (only 2 studies looked at "other treatments, both exercise therapy). Also add "The evidence base at follow-up is limited to a small group of studies with inconsistent findings." I'd also recommend putting a comment under Management (above CBT) noting the RSM review stated that CBT and GET are the only treatments showing any promise. This is stated in the management sub-page, but I think it should also go in the main article too. --sciencewatcher (talk) 21:13, 29 October 2008 (UTC)

I would not object to noting that a particular review (as long as its solid) states that CBT and GET are the only [?] showing promise. (do you mean treatment or management therapies as I'm detecting that these are different?). Though to remain neutral there might be others that request to include a review that shows otherwise. I do not have a particular belief on CBT either way, really meaning I don't having any ironclad sources that influence me either way. But to nip anything in the bud it might be a good idea to maintain balance to pre-cognitively address any statements to the contrary? ie uhm...I don't really know other perspectives of CBT in regards to CFS, or therapies that would show more promise so someone else might have to speak to this. I don't advocate for or against that, but suggest it, because, heck, I'm a bud nipper.

I think this is a thoughtful and reflective phrase :"The evidence base at follow-up is limited to a small group of studies with inconsistent findings." AlsoI applaud that your insertion of evidence for CBT is the best treatment is phrased with direct note of the study rather than stating it is best and using a citation. Given that the state of CFS, though becoming more investigated as the years wear on, is controversy, especially regarding comparison studies and the camps they come out of, phrasing as you suggested "noting the RSM review stated that CBT and GET are the only treatments showing any promise." allows the reader to be cued to the current state of CFS in large group/national dialogue. By noting where this concept comes from and that it may not be the only (able to be validated, or mass consumed) opinion out there, the reader is more likely to consider more than one point of view. Not doing this implies , (stating that CBT is best and only having a citation, even if reflective of the statement) implies that this is widely accepted. In CFS discussion and understanding, my perception of the CFS understanding/debate is that there are many stances, even scientifically and regarding treatment, and while they may not be marginal, there is not clear sweeping belief that cannot be refuted by another set of studies.

As far as replacing standard therapies with usual care, that would be more accurate in terms of terms used and should be at least the correction made. Still I'm a little queasy about leaving it as such. The statement in the article is this: "...concluded that psychological therapy had significantly better results than standard therapies of CFS." Even replacing standard therapies with usual care will not correct the basic fallacy. The article is directly attributed as saying that psycological therapy has better results than usual care. Psycological therapy is no specific enough. Other therapies were not compared against usual care. Only CBT. The two measures that showed improvement were fatigue and clinical outcomes. A perusal of the authors definition of clinical outcomes is related to fatigue reduction. However, on follow up there was no statistical difference between clinical outcomes in CBT and usual care. All other areas showed either no statistical difference, or showed sporadic statistical difference. Of the 40% vs. 26% this was only shown in 4 of the 15 studies. So, CBT, may be effective in managing fatigue versus usual therapies but we have no knowledge if CBT is effective in managing other just as important aspects of CFS, and we know that compared to usual therapies it is not more effective via this study in areas of occupation outcome, clinical outcomes on the follow-up, anxiety, depression, psychological distress, quality of life etc.

So, of course I think my rewording is best. ;) but you could reword it concluded that CBT had significantly better results than usual care in treatment of CFS fatigue, though not in other outcomes measured. And then put the note that you suggested in there. Ara Pelodi (talk) 22:09, 29 October 2008 (UTC)

An interesting assessment Ara Pelodi. I hope you decide to edit, since you're freshly familiarized with the needed changes. The noted difference between subjective and objective improvements with CBT/GET is overall in line with several other related systematic reviews. These papers generally conclude that CBT is somewhat effective certain areas, but also come with a bunch of caveats. Like everything else here, the CBT research needs to be described in the proper context (positive and negative). In the CFS management subpage, perhaps we can list the 4 related systematic reviews and describe the findings? This could then be summarised on the main CFS page.

Sciencewatcher, do they make it clear what "usual care" entails? As I understand it, it essentially means "doing nothing" (medically). I remember reading, (a) a patient involved in one such study claiming that usual care meant total neglect, (b) a researcher responding to a published paper saying that the usual care wasn't properly controlled, since the usual care group were contacted briefly several times throughout the study whereas the CBT patients received much more time.

RetroS1mone, as for the psyche/soma dichotomy, it isn't outdated in the sense that it has actually been superceded, nor has the "grey-area" been effectively explained. It's problematic to dismiss the mind-body problem in CFS without addressing it, and can lead to corner cutting or over-simplifications/generalizations. Obviously symptomatic improvements should be welcomed, but what does the discrepency between symptomatic & physical improvement say about the "functional" mind-body union in CFS?

_Tekaphor (TALK) 02:14, 30 October 2008 (UTC)

All I know is, the sources I read and they are things like Cochrane reviews and major journals, say, there's no good therapy for CFS but the most promising stuff is CBT and exercise so far. Change the wording, I don't care, I am just writing what I understand and you can disagree, no need to write a dissertation on it;) Just remember this is a general encyclopedia not a philosophers journal. The cost studies say CBT is cost effective, we should add it. No CBT is not magic bullet but what is. Tekaphor I am thinking gray matter not grey-area, CBT causes changes in brain some articles say. RetroS1mone talk 02:46, 30 October 2008 (UTC)

Tekaphor, sorry I haven't read the study in detail so I'm not sure what 'usual care' is, but I imagine it is what CFS patients usually get, i.e. pretty much nothing. I think we are in agreement that the article should be changed so that it accurately reflects the conclusions of the major reviews, pointing out both the positive and negative. Whoever wants to make the changes, just go ahead. As RetoS1mone says CBT is one of the most promising treatments for CFS, but it is still not very effective. Just be careful not to bloat the main CFS article - there are only a few paragraphs on each aspect of the illness at the moment, so let's try to keep it that way. --sciencewatcher (talk) 14:54, 30 October 2008 (UTC)

RetroS1mone, CBT/GET has probably received the most research. I don't think anyone has a problem with CBT and GET being mentioned, as long as the caveats are also included. These are generally discussed on the CFS management page, but are lacking in the main CFS article's related subsection. This seems to be what Ara Pelodi is saying. Ha @ dissertation :-p. I just believe the mind-body dualism in CFS is a fundamental issue to the arguments. Yes, changes in grey-matter volume, and cortisol levels, have been reported. While some of the more hardcore advocates may reject any inter-dependence whatsoever between physical and mental dimensions in ME, overall the friction with the cognitive behavioural approach is the degree to which it applies or is promoted for CFS, along with methodolgical issues and patient experience. - Tekaphor (TALK) 15:20, 30 October 2008 (UTC)

Uhm, yeah, what y'all said. I think I'm understood now. :) dissertation - (grinblush right?) I'm not exactly talented in (or known for) being concise about my thought process, lol. Also I read as much of the previous discussion as I could before I jumped in and it seemed like with out a clear presentation of all facets of ones reasoning there was room for misunderstanding. SO I thought i should lay all my thoughts out on the table. As for me editing. I'm happy to suggest edits, but...I don't know if I can actually edit. I question my ability to remain neutral on this article, and also my ability to remain concise. Also I don't want to be responsible for for putting a slash or asterisk in the wrong place and messing up the whole thing. For this particular issue I felt pretty good that I was being, how you say? NPOV, thorough and the changes I suggested (though most certainly not tied to them specifically to correct the imbalance) were concise and fairly accurate. Ara Pelodi (talk) 17:37, 30 October 2008 (UTC)

Well I've made some changes to the CBT section. And I just removed the first ref as it didn't seem to be useful. Feel free to do more work on it or suggest changes. --sciencewatcher (talk) 22:37, 31 October 2008 (UTC)

Reinstate editor who agrees to a proposal?

Guido den Broeder (talk · contribs) was asked by admin Carcharoth whether he might agree to a voluntary restriction to talk-space (see User_talk:Guido_den_Broeder#Proposal), which he has agreed to across all articles for the whole of November. I note polite answering of some queries posed to him on his talk page (including from those he has previously disagreed with), his clear choosing of a full month from now for this (i.e. a longer cool-off from article space than the current block otherwise has to run) and his clarification for across all articles to make things easier. So I think it would be useful to ask again the regular editors to this article to seriously look at his offer, and whether it is the basis for a fresh chance for a more productive approach to discussing and improving this article (my discussion with Carcharoth here).

This is not a call for a vote (and certainly not for a rehash of any gripes) but a gauging of community opinion and goodwill - comment please at his talk page :-) David Ruben ^Talk 02:12, 30 October 2008 (UTC)

Guido lost patience and, on declined further unblock request and some non-positive comments, withdrew offer with churlish edit summary [34] - <sigh>. David Ruben ^Talk 20:25, 31 October 2008 (UTC)

I don't think Guido's behaviours are restricted to CFS alone, I think they're systemic. CFS is just one page that he happens to be on right now. The essential attitude is also still the same - he has done nothing wrong and wikipedia must change to suit him, rather than the other way around. Rather than a main space/topic restriction, civility restriction would be more propos in my opinion. Regarding this page, agreeing to drop the ME/CFS naming issue pending new sources would be nice. I'm not closing the door, I'm saying the sources to date don't support. Really, the work should go into the alternative names for chronic fatigue syndrome; a well-referenced, thorough discussion on that page would go a long way towards settling the issues on the main CFS page. If civility is emplaced, a VERY strong message to be sent to the other editors that good faith requires both parties - no baiting either way and everyone have their best civility clothes on. WLU (t) (c) ^{(rules - simple rules)} 22:29, 31 October 2008 (UTC)

I've also been reading the talk page above. I'm seeing Guido working with others on this talk page, with the ocassional bout of exasperation. Some may call that incivil, but in my book it is just a different temperament. I might be missing the real incivility, so if someone could point it out for me, I'd be grateful. My point here is that in prolonged content disputes like this, civility is an ideal that is rarely achieved. Sometimes, even if you think someone is being, or has been incivil, in the interests of sorting out the actual content of the article, you have to ride the waves and sometimes (not all the time) ignore the comments and avoid getting distracted and carry on commenting on the actual content. Am I making sense here? I can't promise to be around all the time, but if Guido is unblocked, I would be prepared to mediate here if others feel that my post below hasn't got me too involved in the actual content dispute. Carcharoth (talk) 04:46, 1 November 2008 (UTC)

For one example of uncivil behaviour, search above for "Since in your complete and utter ignorance you have already thrashed all the pages and are threatening to continue on that road: let's leave the tags, shall we? Guido den Broeder (talk, visit) 18:41, 22 October 2008 (UTC)". --sciencewatcher (talk) 15:01, 1 November 2008 (UTC)

Thanks for the example. That is incivil, I agree, and it would be really, really good if Guido did make a sincere apology for saying that. But should that statement really disqualify Guido from ever working on this page ever again? At what point, if Guido returned to making relevant and thoughtful points that helped the article improve, would you feel able to work with him again? You might want an apology, but you can never force an apology. What you can do, after a cooling off period, is continue to work with someone and hope that they learn from that. It is a balance between avoiding the corrosive effects of ongoing incivility, and the other side of the coin, people taking affront very easily and refusing to work with someone. There has to be a balance struck somewhere. Carcharoth (talk) 19:02, 1 November 2008 (UTC)

"Some may call that incivil, but in my book it is just a different temperament" Wow, so what is incivility for Carcharoth, I am wondering. Some may call it 3RR but I call it responding to ignorant vandals. Some may call it reading sources, I say RetroS1mone is unqualified to read sources. Where does it end. RetroS1mone talk 17:16, 1 November 2008 (UTC)

It ends when people start working on content again and stop sniping at and misunderstanding each other. I never said you were unqualified to read the sources, and I could justifiable get upset at you saying that I said that. But I am not going to escalate things here. I'm here to work on the content of the article, and I apologise if I've upset you. Given that I've apologised, I hope we can continue working on the article. One part of that is examining different views, and that is where Guido comes in. From what I've seen, Guido can talk articulately about his position, and can make a contribution here, but that will only be possible if people put the past behind them and try and move forward from this. Can we all do that, or do you (and others) want to be left alone to write the article the way you want it written? That is not collaboration. People say that Guido needs to learn how to collaborate, but equally people working on this article need to be able to work with others. I've tried making a few steps in that direction, but RetroS1mone, for one, has got upset already. Where do we go from here? Are things so bad around here that no-one new can arrive and work on the article? Carcharoth (talk) 18:54, 1 November 2008 (UTC)

[unindent] As I've said before, I'll work with him if he is unblocked. The problem is that, at least recently, it has always been Guido who has created/escalated the problems (being uncivil, falsely accusing people of vandalism, incorrectly adding pov and other tags when there is no dispute and getting upset when people remove them and calling them vandals, refusing to discuss issues on the talk page and instead adding tags with no discussion and getting upset when the tags are removed, etc, etc, etc. He still isn't admitting on his talk page that he actually added any tags incorrectly. If he comes back and works with people then I won't have a problem with him, and I imagine the other editors feel the same way. I don't want or need an apology from him. It's just that we have doubts about whether Guido will really change. Since he has been blocked we have had no problems on this page, and everyone has worked together very well. --sciencewatcher (talk) 00:18, 2 November 2008 (UTC)

You have to make reasonable adjustments for people who have cognitive dysfunction and emotional lability as part of their disability (I may be wrong but I was under the impression Guido suffers from the subject of this article, apologies Guido if I'm off base there). It seems to me more like exasperation and momentary loss of patience rather than deliberate incivility. All the past good work of the article has basically been trashed over the last few months by a small clique of POV-addled editors so I can see why his usual stoicism has been severely challenged. —Preceding unsigned comment added by 62.69.36.164 (talk) 09:35, 24 November 2008 (UTC)

Another source for the naming debate

Could the editors of this talk page have a look at the folowing source, please?

• Chronic Fatigue Syndrome / Myalgic Encephalomyelitis, from www.patient.co.uk

What this site says is:

"Some people believe that there are two separate conditions - CFS and ME. Other people believe that the two conditions are the same - but symptoms can vary. [...] Until these issues are resolved, many people now use the 'umbrella' term of CFS/ME."www.patient.co.uk

As far as the reliability of the source goes, I found this page, which says it is run by two family doctors (GPs) and lists the doctors that provide content. I know other sources above have been heavily discussed, both here and at Alternative names for chronic fatigue syndrome and Controversies related to chronic fatigue syndrome, and I may have missed a discussion about this source, but I'd be interested to hear what people have to say about this. For what it is worth, when there is this much debate in the medical community, I think surveying the literature and trying to apply WP:UNDUE is very tricky and easy to get wrong. Far better to present the different sources and viewpoints and let the readers themselves decide, rather than acting as a referee between the sources (Wikipedia editors are not really qualified to do things to that level of detail over technical and medical stuff) - unless sources can be found that have explicitly surveyed the literature in an attempt to resolve this. Carcharoth (talk) 04:40, 1 November 2008 (UTC)

I thought from WP:MEDRS the medical articles use sources from the medical literature not websites of two doctors. And I thought medical articles are trying to explain a condition from reliable sources, Carcharoth do you think the point is trying to put in as many different viewpoints as we can, I do not understand this but I can be wrong about it. Thx, RetroS1mone talk 05:35, 1 November 2008 (UTC)

The trouble with using the medical literature is that you need a certain level of understanding to interpret it correctly. Should we be trusting Wikipedia editors to correctly interpret the medical literature? Your edit summary said: "Cochrane reviews of fifteen controlled studies against website of 2 doctors, 4000 articles against editors idea of a sentence on CDC web" - could you expand on that instead of discussing things via edit summaries? If the Cochrane review specifically discusses naming issues, that is good. If it is discussing clinical descriptions, or treatments, or management of the condition, or other stuff like that, that is not related specifically to the naming issue (though I realise it is inter-related). Also, I don't think the idea of Wikipedia editors conducting literature searches and saying "4000 studies use this name" is a great way of tackling this. What you need is sources that explicitly talk about the naming controversy and the "separate/same/combined name" issue. At that point, the reliability of the various sources can be discussed. Carcharoth (talk) 06:17, 1 November 2008 (UTC)

"Should we be trusting Wikipedia editors to correctly interpret the medical literature?" No we should be trusting medical professionals that are experts to interpret the literature that is why to use reviews especially Cochrane reviews and other meta analysis. All most all those things use CFS, some of them say ME is another name just like this article does.

"What you need is sources that explicitly talk about the naming controversy and the "separate/same/combined name" issue." That is like saying you need medical soruces explicitly talking about Lyme Disease not getting caused by a bioweapons program led by Dr. so or so. They do not do that! Bc no reliable person believes it and is writing an article about it! Just like the name conteroversy, only ME activists and patient/doctors are still debating this and writing stuff about it, every body else says CFS. I think you are saying, when a few editors that are ME activists say the article should be called ME or ME/CFS it does not matter what medical people actually call it in literature.

"could you expand on that instead of discussing things via edit summaries" OK, you are searching for some thing, any thing that will help Guido's position, you find a website by two doctors I do not know that is even a reliable source may be may be not. You need to see the wide picture of the CFS literature. I have looked at a wide picture of the CFS literature, a few hundred articles since June? not just literature searches, and the literature does what this article does, it calls it CFS and some times says post viral fatigue or ME or Iceland disease are different terms. BTW it is wierd you are implying I am ignorant and not qualified to read the literature just like Guido btw but that is ok we all have our prejudice!

"Also, I don't think the idea of Wikipedia editors conducting literature searches and saying "4000 studies use this name" is a great way of tackling this" OK but what you are proposing is, even tho every one says CFS, we should call it what Guido wants, is that a better approach, I dont think so.

So, I think this article does so much as it can to show Guido's position and the ME activist position without going against weight and what med articles should do. How about, we could have another article about ME activist's views of CFS or similar, that way there would not need being overall medical literature, Guido and other ME people could selectively interpret literature like they have done here in past, there it is ok, here it is not, and also use other sources like websites of two doctors that are not good for medical articles but could be ok for more special interst kinds of things like this. RetroS1mone talk 17:07, 1 November 2008 (UTC)

RetroS1mone, I am not implying you are ignorant and not qualified to read the literature. I am saying that practically all Wikipedia editors (me included) are not qualified to interpret the literature, and in any case that approach should be avoided unless the position is crystal-clear. Anything else risks synthesis and original research. If some of what I say sounds like what Guido has said, maybe it is because we have independently come to the same conclusions. Guido, you, me and others are likely to all, at some point, be wrong, and at other times be right. When people agree, it is not helpful to accuse them of repeating each other's position. As for what the ME activist position is - that would need to be sourced to secondary literature that has written about ME activism, and balanced against what the medical profession says about ME activism, and what ME activists say about ME activism. Once I've had a chance to look more closely at the sources currently being used, I might be able to explain my position better. Will you give me the courtesy of giving me the time to do that without getting affronted over (what I see as) misunderstandings? And in case it is not clear, I will repeat what I said before. We need to find a source that explicitly talks about the controversies. Not a source published by ME activists. Not a source published by medical professionals that may want to downplay the controversy. But a reliable and independent source that has looked at both sides and come to independent conclusions. Possibly no such sources exists, but if there is something out there, that is what we need to find. I think one thing is clear - it is not just ME activists that use alternative names. For example '"The report of the Chief Medical Officer's CFS/ME working group" [35]. That is the UK Department of Health, in 2002, using the term "CFS/ME". It was an independent working group, but I presume the working group did not consist of ME activists. Now, the situation may be different in the USA to what it is in the USA or Europe. If so, we need to make that much, much clearer than we do at the moment. Carcharoth (talk) 18:46, 1 November 2008 (UTC)

Carcharoth, your point seems reasonable and well thought out. You seem to be new here like me. Might I make a suggestions to others who have a history, that perhaps Guido might be put aside when talking about issues not specifically related to Guido himself, unless we are quoting him? I know he has ruffled feathers in the past, justifiably or not. However, when a person talks about an issue I don't think it is helpful to assume that they are attempting to support or further Guido's agenda. Issues are not owned by him, nor is everyone here familiar with his intensity into specific issues.

It might be useful instead, when an issue is brought up, to consider it in terms of what the presenter is saying and not let angst about the past continue to fuel frustration. Just a suggestion. Ara Pelodi (talk) 19:18, 2 November 2008 (UTC)

[unindent]Carcharoth: nobody is saying that only activists use the term ME. It already says in the Alternative Names sub-article that many organisations in the UK and Canada use the term CFS/ME or ME/CFS. There are three issues, as I see it: [1] is "ME" an accurate diagnosis? Most researchers today believe it is not (and in fact the person who originally coined the term was doubtful of its validity - see below). [2] is "ME" a separate illness from CFS? Many patients believe it is, but most researchers don't. [3] should this article be called CFS/ME or CFS? I think CFS is better, for a number of reasons: most researchers (even in the UK) use CFS rather than CFS/ME. The rest of the world also tends to use CFS. It seems to be the most commonly used name by researchers. I agree with you it would be good to have an authorative reference talking about the naming controversy. --sciencewatcher (talk) 23:07, 2 November 2008 (UTC)

I just found one good reference which talks about the naming debate. I'm not sure if this ref appears anywhere in the articles already. Full text is here. Relevant bit: "Recently the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in the United Kingdom recommended dropping the diagnostic term myalgic encephalomyelitis or ME, widely used in the United Kingdom in recent decades, because there is, so far, no recognized pathology in muscles and in the central nervous system – as is implied by the term ME. Instead, the term chronic fatigue syndrome was recommended, as defined by the United States' Centers for Disease Control and Prevention (CDC, Atlanta, GA, USA) [10] and is today the most commonly used name.". --sciencewatcher (talk) 23:37, 2 November 2008 (UTC)

That looks like an excellent reference, and is exactly the sort of thing I was talking about. It is dated 2001. My initial questions would be: Is that authoritative for its time? Has anything else similar been published since? Have things changed since even if nothing has been explicitly published about the names used? Carcharoth (talk) 03:00, 3 November 2008 (UTC)

I wouldn't say it is authorative - it's just a review by one team of researchers, although they are respected and they have done a lot of CFS research. I just did searches like "cfs myalgic encephalomyelitis name" (without the quotes) on google scholar and that was the only good reference I found talking about the names. I'm finding that google scholar is now a great way to search for research (better than PubMed or google) - it tends to give you the most relevant research first (unlike PubMed, where you have to wade through the results), and unlike google search you don't get a whole load of people's homepages in the results. Also if there is a pdf full-text google scholar will pick it up. --sciencewatcher (talk) 15:38, 3 November 2008 (UTC)

The paper that (fails to properly) cites the above may be from 2001 but the Royal Colleges Report is from 1996. It's really been superceded by stuff like the CMO's Report (2002) and the Canadian guidelines (2003). —Preceding unsigned comment added by 62.69.36.164 (talk) 09:43, 24 November 2008 (UTC)

Talk page archive summaries

Has anyone found the time to do a summary of the talk page archives with a view to writing up some sort of FAQ or summary of what has been discussed in the past? What I would be interested to know is at what point there was the largest number of people discussing the issue. There might be something in the talk page archives, but I haven't got that far yet (there is a lot to read). What I'm seeing above is a few dedicated editors, and no indication yet that a clear summary of the literature (I suppose there is so much literature that summarising it is not possible) has been presented to a broad base of Wikipedia editors for a neutral decision on how to approach this (i.e. a request for comments). Carcharoth (talk) 04:56, 1 November 2008 (UTC)

Other relevant talk pages are: Talk:Alternative names for chronic fatigue syndrome and Talk:Controversies related to chronic fatigue syndrome. Before I go any further, I want to say that debates about the titles of an article are particularly draining. It is far better to get the content of the article to a much better standard and worry about the right title later. As long as the ME and CFS/ME redirects are in place, and something is mentioned at the top of each article, then readers will find their way here and know what is going on. They may be (depending on where they are from) surprised at the title, but it is the content of the article that matter 100 times more than the title. Hours and hours spent debating a title is time better spent improving the article. Carcharoth (talk) 05:10, 1 November 2008 (UTC)

OK, do you have suggestions on improving the article, bc it has alot of high quality sources already, it says there is a naming conteroversy, it says ME is an alternative name prefered by some patients and doctors. Guido told us what would improve the article, that is take out all my edits, go back to version before I edited, take out any thing about psychological bc he thinks it is wrong all tho well sourced. I disagree may be you agree. RetroS1mone talk 05:39, 1 November 2008 (UTC)

I am with you on the naming, it is very wasteful debating it, specially when most sources in last 20 years use one name. Here is an early version of this article, it startles it is so similar to alot of what there is now. Most of the editing was done in this year and last year, I think there is a group of editors like Guido, MEspringal, Jagra, Ward20, Strangelv, Tekaphor etc. Guido has on his user page that that did alot of work renaming things and making subpages in last 2 years approximate but some of them are not editing the pages now and there is a shift back towards the mainstream, my opinion, and this can be why Guido is upset now, he thinks the work of this group is being destryoed?? Which I can understand, but weight is also important. I like the FAQ idea btw, thx for that. RetroS1mone talk 06:02, 1 November 2008 (UTC)

Does the page say that some people use the combined term "CFS/ME"? For example: "Many patients, and some research and medical professionals in the United Kingdom and Canada, use this term in preference to or in conjunction with CFS (ME/CFS or CFS/ME). An international association of researchers and clinicians is named IACFS/ME." - from Alternative names for chronic fatigue syndrome - see Sharpe M (2002). "The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?". Clin Med 2 (5): 427-9. PMID 12448589: "Chronic fatigue syndrome (CFS) sometimes known as myalgic encephalomyelitis or encephalopathy (ME) has long been a controversial topic. [...] Much remains to be resolved before guidance that is both evidence based and acceptable to all parties is achieved." (2002) - have things changed in the last 6 years? Can Wikipedia really in all honesty tone down aspects of the controversy by invoking WP:UNDUE, without ending up being involved in the controversy itself? Carcharoth (talk) 06:21, 1 November 2008 (UTC)

Does the page say CFS/ME, I gave the link so I guess it is rehtorical question, but no it does not. Wikipedia should follow the common use and that is CFS. You can't blow up what is not a controversy except in activist circles without getting involved in the controversy itself. So you call it CFS and you say there is another name preferred from some activists etc, that is what the article does now. RetroS1mone talk 17:21, 1 November 2008 (UTC)

RetroS1mone, I'm trying to help here. If you take affront at what I'm saying, we are not going to get very far. My position is simple. The extent of common use appears to vary from country to country. I'm not trying to gauge a percentage in the medical literature and combine that percentage with WP:UNDUE to work out what Wikipedia should say. I'm trying to find out what published experts have said about the name controversy. Not what published experts call the disease. Do you see the difference? Some people call the condition by a combined name of "CFS/ME". Wikipedia should have room in this article to say that. Not numerous paragraphs about it, but an adequate summary in this article of the "alternative names" article. Carcharoth (talk) 18:30, 1 November 2008 (UTC)

I am not taking affront Carcharoth, you can think about wp:faith also pls, I am just wondering why a respected admin takes a side and repeats what Guido said w/o looking into history and so confused about Wikipedia medical articles. Published experts don't say much about the name conteroversy bc there is not much name conteroversy except for ME activists like Guido, so the stuff you find published is in activist newsletter and journal. Name conteroversy in past was between benign me and epidemic me then it was chronic mono or epstien barr against cfs and now it is should WHO say cfs beside post viral fatigue. World Health Organization calls it post viral fatigue syndrome, under that benign myalgic encephalomyelitis and links from CFS. it does not say CFS/ME. But you are right, some patients are very activist about saying ME and there is popular sources for that, I say, add CFS/ME to Nomenclature which is the second section in article!!!that is wierd to, and say why it is used and who does it. but that is enough this article is about CFS it is a medical article so it is wrong putting so much in the nomenclature. RetroS1mone talk 13:31, 3 November 2008 (UTC)

Towards a FAQ

I think Talk:Chronic fatigue syndrome/ME archive was most useful (from my brief scan through the talk page archives). Now, I want to suggest a FAQ-based approach. Have a look at Talk:Global warming/FAQ and Talk:Evolution/FAQ. Does anyone think that that sort of approach would help here? A good starting point, I think, would be to clearly lay out the history of the various conditions and names, and their definitions, in a working space that can be worked on in a more fluid manner than in the article. Possibly a draft of various sections would help as well. See Talk:Evolution/draft article (though that is more because the main article is in a near-permanent state of protection - not something I hope would ever happen here). Carcharoth (talk) 05:02, 1 November 2008 (UTC)

More on the validity of ME

I found the full text of Donald Acheson's "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia" article from 1959 here. He says the encephalomyelitis term is due to the "presumed inflammatory nature of the disorder" (my italics). And he says the term BME has been criticised by Sigurdsson who says that "the disease is not always benign, not invariably myalgic, and possibly never encephalomyelitis". Also, he says the staff at the Royal Free Hospital criticized the name. I would suggest putting these criticisms into the Alternative Names sub-page. --sciencewatcher (talk) 03:38, 2 November 2008 (UTC)

One thing to be wary of is putting too much in subpages. At some point, someone needs to step back and assess whether the balance between details in subpages and summaries in the main article is being done right. As an example from above, I think that because CFS is the main article people will arrive at, there should be something in the summary here about CFS/ME and ME. Carcharoth (talk) 03:02, 3 November 2008 (UTC)

The issue of ME vs CFS is more than just name accuracy, but also about clinical descriptions

Thanks Sciencewatcher for finding that paper. I noticed in this paper that ME wasn't "invariably" fatigue either, so now I better understand why ME proponents generally hate the emphasis on "fatigue" in CFS over everything else. The impression I attained from skimming through it, is that there are important similarities which suggest ME and CFS are indeed comparable, although CFS is slanted towards common "chronic fatigue" and presumed chronic Epstein-Barr virus. On "lymphadenopathy", Acheson states that "In the Royal Free Hospital outbreaks it was such a constant feature that the illness was at first diagnosed as infectious mononucleosis.", perhaps the Lake Tahoe outbreak which influenced the CFS definition was similar, so was CFS over-influenced by a single outbreak? Whereas ME in this paper seems to be a hybrid description based on numerous outbreaks, which despite some major similarities, varied somewhat in presentation and outcome; this adds some heterogeneity to ME, although the accuracy of the CFS definition itself is still also in question.

While Acheson's paper indicates that ME can cause long-term disability in some people, the bulk of the data is on ME as an acute illness (whereas CFS by definition is a chronic condition, and the early onset stage is almost ignored). It is interesting to note that in some outbreaks Acheson says that most people recovered within a few months (so therefore can't be retrospectively classed as "CFS patients"?), although overall many cases turned chronic and symptoms usually remained despite improvements in function. Melvin Ramsay's later paper on ME (PMID 746017) describes: "A follow-up study suggests that there is one group of patients that recovers completely or nearly completely, a second that recovers but is subject to relapses and a third that shows little or no recovery, these patients remaining incapacitated." Unsurprisingly, it sounds like those affected by the outbreaks generally represent a more neuroimmune-affected group than what the CFS criteria now represents, which reminds me of the Canadian 2003 definition as an attempt to reintroduce ME into CFS.

_Tekaphor (TALK) 03:31, 3 November 2008 (UTC)

I think it is the same for CFS with regards some patients recovering in a few months. We already have PVFS diagnosis, for people who have post-viral CFS lasting a few months. Then, if it lasts longer than 6 months they are diagnosed with CFS. I think the research shows the majority of people recover from PVFS before they reach the 6 months stage (after that recovery is much less likely). And I agree with you about the confusion about whether he is talking about one illness or multiple. This should be discussed in the article if it isn't already. --sciencewatcher (talk) 15:26, 3 November 2008 (UTC)

We don't know enough about other PVFS diseases to generalize this, but it has indeed been reported that many epidemic cases of ME recover quickly. The same may be true for endemic cases; in practice, these patients most likely do not get diagnosed at all. --Guido den Broeder (talk, visit) 02:06, 24 November 2008 (UTC)

Different uses of the term "ME"

Could I raise a point here to see if I'm getting this right. I think the term ME (myalgic encephalomyelitis/encephalopathy) is used in several ways:

• (1) A strict medical 'Latin' (etymological) use where the term can effectively be translated as muscle pain, "myalgic" and "encephalomyelitis" inflammation of the brain and spinal cord (for 'myalagic encephalopathy' - "pathy" refers to unspecified pathology rather than inflammation).
• (2) A term used to describe a condition that some consider distinct from chronic fatigue syndrome.
• (3) A term considered by some to be an alternative name for chronic fatigue syndrome.

I think points (1) and (3) are covered by Alternative names for chronic fatigue syndrome, though the exact etymological history would make an interesting article in its own right. Would point (2) be covered by Controversies related to chronic fatigue syndrome? The point I'm trying to make here is that there is a distinction between those that consider something that they call ME to be something different from CFS, and those that think CFS is the wrong name (or a poor name) for the condition. Have I got that about right? Carcharoth (talk) 03:13, 3 November 2008 (UTC)

Carcharoth you are right and it is good you are getting involved but pls could you read the archives, this was discussed all ready thx. I am not trying to take affront and attack you I am just saying, there is alot about it up there, it will help you reading it.

But the problem, way 2 you say, is not supported by good sources it is a minority opinion like they say and not minority, it is like a few people. You i think want to give it alot of weight bc you are defending Guido, that is what you know, and Guido and other ME activists are tire-less for their cause and that is great, but Wikipedia is not for giving loudest side the weight.

Naming stuff should go, CFS, that is like more then 10 to one common name, then PVFS and BME, that is the WHO, then you can talk about the historical stuff. For patient preferred, i think CFIDS is the biggest orgnanization am I right about it, but I think so, so CFIDS should be there, it is not having it's own sentence now, and then ME and also CFS/ME to sum up sub article. RetroS1mone talk 13:45, 3 November 2008 (UTC)

Retro: I don't think Carcharoth is suggesting we rename/rewrite the entire article, he's just saying (I think) that we should put a paragraph into the controversies section. I agree that many patient groups do believe that ME and CFS are different (not just Guido), and if we can find a quote or reference from a respected patient organisation it might be worth putting it in. --sciencewatcher (talk) 15:31, 3 November 2008 (UTC)

I put more sources in Alternative names for chronic fatigue syndrome and i talked about the differences in researchers and doctors and patients with review sources. See if you all agree with it, if you do this article should get more about the ME CFS. Also when can the tag come off this article? I think the "totally disputed" was not right for Alternative names, it is not totally disputed not even by Guido I think it should come off that article I will take it off soon when you do not object. RetroS1mone talk 06:05, 4 November 2008 (UTC)

I took the tag off - I thought you just forgot to remove it. The article doesn't appear to be disputed - Guido just put the tag on, then insulted me in the talk page, and refused to discuss the reason for the tag (see "totally disputed" section). --sciencewatcher (talk) 16:13, 4 November 2008 (UTC)

Hang on a mo, RetroS1mone. Carcharoth has put his finger on something surely? Please don't dismiss it. Maybe here's a proposal that will make everyone happy. Either i) ME is a separate condition from CFS (ergo it should have its own page); or ii) it is a subset of CFS (in which case it should have a separate paragraph on the CFS page, along with any other subsets of CFS); or iii) it is a synonym for CFS - in which case, the page is right as it exists. Does anyone disagree? Tishtosh20 (talk) 00:31, 7 November 2008 (UTC)

Actually, what I am saying is that regardless of the "truth", the term ME (and CFS) is used in different ways by different people. That needs to be made clear in this article and the related articles. There are lots of nuances here, and I don't think this article or the related one picks up on all the nuances at the moment. Even for minority viewpoints, you have to include enough information to make clear what the minority viewpoints are, in order to avoid adding to the confusion. Carcharoth (talk) 00:56, 7 November 2008 (UTC)

Use (1) is the main interpretation. To understand (2) and (3), it is necessary to list the various uses of CFS as well. Guido den Broeder (talk, visit) 01:46, 24 November 2008 (UTC)

Can I also make some points about the Wikipedia guidelines?

"The names of Wikipedia articles should be optimized for readers over editors, and for a general audience over specialists."

Even if we accept that "the majority of the medical community" opt for CFS, then we should also recognise that the majority of patients in the UK - I can't speak for anywhere else - opt for ME/CFS: the main patient group here is named the ME Association http://www.meassociation.org.uk, and the main UK research charity is ME Research UK http://www.meresearch.org.uk

See also The 25% ME Group http://www.25megroup.org; The Young ME Sufferers Trust http://www.tymestrust.org;

Patients here reject CFS on its own as inaccurate for their cases, and as the Wikipedia guidelines say: "the purpose of an article's title is to enable that article to be found by interested readers". These are more likely to be patients than medicos - and their views are unlikely to appear in peer-reviewed journals!

"Minority views can receive attention on pages specifically devoted to them" - but this, I think is what Guido was proposing - and didn’t get much support for! Is there instead a case for some kind ofpage with an ME title that would cross-refer to CFS? Or does this contravene POV forks guidlelines?

I accept that the UK may differ from the US - and indeed from other nations.

But there are two UK government reports which refuse to come down on the simple CFS term - the Gibson report and the NICE guidelines. And during August 2008, Ann Keen, Parliamentary Under-Secretary for Health Services on the The official site of the Prime Minister's Office http://www.number10.gov.uk/Page16688 use the term CFS/ME.

Yes, I know: these are not medical reports: they are from what someone rcently described as "agencies, which are of lower reliability than the the peer-reviewed journals, according to our guidelines on [WP:MEDRS|medically reliable sources]]. “

But they are secondary sources - and as the guidelines say:

“Ideal sources for such articles include general or systematic reviews in reputable medical journals, widely recognised standard textbooks written by experts in a field, or medical guidelines and position statements from nationally or internationally reputable expert bodies. “ (my italics).

Though secondary, they are NOT described by the guidelines as of lower reliability - indeed the guidelines conclude that “primary sources should not be cited or juxtaposed so as to "debunk" or contradict the conclusions of reliable secondary sources”.

Jimbo also says: “If a viewpoint is held by a significant minority, then it should be easy to name prominent adherents;” and “the NPOV policy is to let competing approaches exist on the same page”

Can we reach a compromise here? Please at least read the two reports before rubbishing them:

Gibson report: http://www.erythos.com/gibsonenquiry/

NICE guidelines: http://www.nice.org.uk/guidance/index.jsp?action=download&r=true&o=34192

(Sorry - I can't remember how to do links properly. Nor would you if you had ME!)

Tishtosh20 (talk) 01:09, 7 November 2008 (UTC)

Isn't this already covered in the Alternative Names sub-article? Or are you proposing to create a separate article for ME? I'm not opposed to an ME article if that's what everyone agrees to, but I'm not sure it's necessary. After all, we don't have separate articles for PVCS, CFIDS, etc. The UK government's position is that CFS and ME are interchangable terms for the same illness, so it makes sense to just have a redirect from ME and explain in the article that some people call the illness ME or CFS/ME.

The only issue that isn't in the article, which probably needs to be put in, is the minority viewpoint that some patient organisations believe that CFS and ME are different illnesses. --sciencewatcher (talk) 02:39, 7 November 2008 (UTC)

Tishtosh20 I hope your OK, and I am agreeing on you and Carcharoth and I made changes, pls look at Alternative names for chronic fatigue syndrome Sciencewatcher and me did some addition there with some good reviews like the Prins etal systematic review from 2006, that is a Dutch group in a UK journal bc I know you are objecting to American imperialism. The longest section in Altenrative names is on ME. The UK patient view is there, also how they protested and got the Royal College to drop their opposing ME and use CFS/ME or ME/CFS. It also says some people think ME and CFS are different conditions. I can only find one good source for it, and their reference is the 1959 Acheson paper. Do you have other good sources, pls tell then we can add more. That stuff that is in Alternative names has good sources, it can go in this article.

I do think best solution is what I said before why not have article about like Patient groups' views about CFS or ME/CFS Then medrs is not so improtant bc it is not a medical article and it is fine having views from non professionals that is what it is about!! That article can be linked from here. Wikipedia needs to have med articles based on medrs but other articles do not need to be that is where patient's views and non-professional views are great!! RetroS1mone talk 02:49, 7 November 2008 (UTC)

I took some ME and CFIDS stuff from Alternative names for chronic fatigue syndrome and put it in nomenclature section so now the history of patient's groups and doctors dispute in UK is here, also the view from some people CFS and ME are separate conditions. RetroS1mone talk 10:21, 10 November 2008 (UTC)

I also re-organized using the WP:MEDMOS guidelines for medical articles. Controversy related is in "Society and Culture" following "History". RetroS1mone talk 10:53, 10 November 2008 (UTC)

I just read some of the additions you added and I think it looks good. I did notice on my watchlist that you have done more so I will read some more but you are doing wonderful to try to get the information in that has been in debates here. It nice to see the fairness you are trying to do and the hard work you are doing to do it the right way, kudos to you IMHO! --CrohnieGal^Talk 13:38, 10 November 2008 (UTC)

Thank you CrohnieGal!! RetroS1mone talk 16:21, 10 November 2008 (UTC)

I like the added bit explaining 'most common name' - that's excellent, thank you; also the extra info on 'Benign myalgic encephalomyelitis' under 'Nomenclature'. I think the additional explanations are a huge improvement and fair to all.

If I could have my druthers I'd like to see links to some of the UK reports/organisations - especailly Gibson and NICE - perhaps most appropriately in the para that starts 'Many patients, and some doctors...'. If I could have that I'd go away and leave you all in peace. But maybe I'm pushing my luck??!!

Two factual updates:

i) "Tishtosh20... I know you are objecting to American imperialism." You know nothing of the kind.

ii) "Tishtosh20 I hope you're OK..." No. Tishtosh20 (talk) 00:25, 13 November 2008 (UTC)

Tishtosh20 I am sorry I do not spell check and gramar check my talk page comment i just write what is on my head and it does not all ways come out right. By OK I mean I hope you are doing better, I don't know you are doing better but I hope you get better it was a dumb way trying to say "Get well!!" American imperialism, you said you think of CFS like an American thing when the rest of world says ME, that is what I was saying by American imperialism may be you do not think it is imperialism those were my words.

I do not want you to go away Tishtosh20 but it is possible putting in the UK reports that are notable in reliable sources. Lets talk more about it. RetroS1mone talk 03:18, 13 November 2008 (UTC)

Disputed tag removal

Again are there specific objections to remove the tag? RetroS1mone talk 11:44, 10 November 2008 (UTC)

Not from me,I think you should remove. --CrohnieGal^Talk 13:34, 10 November 2008 (UTC)

I'd like it to stay until we have truly nailed this one.Tishtosh20 (talk) 00:11, 13 November 2008 (UTC)

Ok but what specifically do you want? RetroS1mone talk 00:13, 13 November 2008 (UTC)

I think the tag is disruptive. The editor who placed it has been banned, and never bothered to give a clear outline of the dispute. JFW | T@lk 08:57, 16 November 2008 (UTC)

OK I took off the tag, that is consensus I think. Tishtosh had one objection, say the NICE guidelines and Gibson Enquiry say CFS/ME or ME/CFS. It is all ready saying ME/CFS and CFS/ME are common names, when you put in NICE guideliness then do not you have to put in alot of other organizations, US and other places, and the Enquiry is not in reliable sources, the website for it is an orchid society!! So w/o better and reliable sources on the Enquiry I do not think to put it in this article, the conteroversy article right one? RetroS1mone talk 02:59, 17 November 2008 (UTC)

Factual update re. RetroS1mone's comment on the Gibson Inquiry website. This site is only one of five hosted on the same domain. All are for voluntary bodies which include a Pre-School, two orchid organisations and an ME campaigning group, plus Gibson. The only common factors are the shared web space (given without charge) and thus a shared root domain name, and the same Webmaster. The Gibson site and its content has always been and continues to be controlled directly, via the Webmaster, by Dr Ian Gibson MP of the UK Parliament's Group on Scientific Research into Myalgic Encephalomyelitis (GSRME, i.e. the Gibson Inquiry), whose official site it is, as clearly stated on the site itself. Thus the site's reliability as a source on the Inqiry is 100% - none better - and is in no way compromised or influenced by any other site sharing its host domain. Erythos (talk) 23:29, 21 November 2008 (UTC)Erythos

I think an important government organization would have government web site not share a name with orchid society called Erythos, that is also coincidence I guess your name. What ever it is it is very obscure and there does not seem a good news source or other reliable indapendant source about it. RetroS1mone talk 01:23, 23 November 2008 (UTC)

Two identical letters to the editor in local UK news papers from a ME activist, that is all i see and it is nonrs. RetroS1mone talk 01:32, 23 November 2008 (UTC)

My guess is Erythos is the webmaster for the site. Anyway, the Gibson Enquiry wasn't really an "important government organisation" - it was just an enquiry by a member of the UK parliament (Ian Gibson). Perhaps he should have made the site look a bit more official, but I don't doubt that the info on the site is the actual official report from the inquiry. Whether it is a reliable source is another matter. My opinion is that it is a reliable source for comments about the illness, but not for anything to do with medical research. What was the reference for anyway? --sciencewatcher (talk) 02:28, 23 November 2008 (UTC)

User TishTosh20 said they wanted put in links to NICE and the Gibson Enquiry. The NICE is there, i added some stuff on that today, but I do not think Gibson Enquiry is very notable and the website is kind of a problem for rs, it could be in the Controversy article, i do not think it is notable and rs for main article. RetroS1mone talk 03:27, 23 November 2008 (UTC)

The Gibson inquiry is not an official parliamentary enquiry, but it is not a one-man job either. Various politicians and scientists have contributed to it. If the NICE guideline is mentioned, which is a very one-sided view, then referencing this inquiry (the report, not necessarily the website) can help belance the text. Guido den Broeder (talk, visit) 01:57, 24 November 2008 (UTC)

NICE guideline is a National Health Service product, that is in the article as an example of guidelines. "One sided view" is your interpretation. We do not balance text with nonrs. Gibson Enquiry is just not notable, and it is not in reliable sources. It can go in an article like Conteroversy, it is not appropriate for the medical article. RetroS1mone talk 04:21, 24 November 2008 (UTC)

Sorry I mean it can go in Conteroversy article if some one finds a reliable source for it. RetroS1mone talk 04:22, 24 November 2008 (UTC)

Obviously, the report is its own reliable source for its existence.

Gibson I. e.a. (2006), "Inquiry into the status of CFS / M.E. and research into causes and treatment", Group in Scientific Research into Myalgic Encephalomyelitis (M.E.), Londen, England [36]

The fact that it is mentioned by a great many patient organizations makes it notable. [37] Guido den Broeder (talk, visit) 08:43, 24 November 2008 (UTC)

Mere existence isn't enough, and googlehits isn't useful for many things, but ultimately the paper might be used in the history/society sections or in the controversy article. What sort of text could it justify/what changes could be made based on it? WLU (t) (c) ^{(rules - simple rules)} 23:26, 29 November 2008 (UTC)

International Symposium on Viruses in Chronic Fatigue Syndrome 2008

By Drgao, November 2008

You many want to to consider providing references to the work of Dr John Chia, Dr Nora Chapman on enterovirus aetiologies of CFS, arguably one of the more common viral causes of CFS (with Epstein-Barr virus, Herpes Six, and Parvovirus either being infectious co-factors, or slightly less common viral causes of CFS). Of course, CFS has non-infectious aetiologies also, such as pesticide exposure, but here I wish to provide an update on the rapidly-progressing research on viral causes.

The persistent enterovirus infections suspected of causing the CFS syndrome do not shown up in blood tests. Up to very recently, this has been a complete mystery.

But new research by Nora Chapman, et al, explains why: it seems that in long term enteroviral infections, actual genetic changes occur to the virus, and a new form of this virus emerges, called the the terminally-deleted enterovirus, which is a NON-CYTOPATHIC ENTEROVIRUS. This non-cytopathic enterovirus lives within cells (intracellular), and rarely breaks out (no cellular lysis), therefore it is rarely found in the blood, spinal fluid, etc. This new research begins to explain why enterovirus has been so hard to locate within the blood and central nervous system of CFS patients, because in the long term, enterovirus mutates into a non-cytopathic form.

NORA CHAPMAN SYMPOSIUM 2008 VIDEO: THE NON-CYTOPATHIC ENTEROVIRUS: http://www.scivee.org/node/7031

In this video given at the Symposium, Nora Chapman explains that the enterovirus ditches significant portions of its own RNA, but is still capable of persisting and replicating within cells at a low yield. The provides the mechanism to explain why enteroviruses are often detected within human tissues, even though no infectious and cytolytic enteroviruses are found. SInce they do not quickly destroy the cell, these non-cytopathic enteroviruses remain within the cell, where they can cause cellular dysfunction. These non-cytopathic enteroviruses can exist even in the presence of an active immune response, and can thus cause this cellular dysfunction for a long time.

This is a groundbreaking advancement in understanding the enterovirus.

Enterovirus can now been consistently detected in CFS patients, thanks to the meticulous and pioneering work of John Chia in finding enteroviral genes in the tissues of CFS patients.

Chia says that the most reliable way of detecting long-term enterovirus infection is through taking a tissue sample via stomach biopsy, and testing this tissue for the presence of enteroviral RNA genes and enteroviral VP1 protein. With this approach, and for the first time, Chia is consistently able to detect enterovirus genes and enterovirus VP1 protein in the tissues of the subset of CFS patients whose condition is caused by an enterovirus such as the coxsackie B virus.

Chia has given double interferon therapy to CFS patients with enterovirus, and has put their condition into remission. This in itself certainly goes a long way to prove that the aetiology of this subset of CFS is an viral one. But unfortunately for the patients, many relapse after about a year, so it is not yet a permanent cure. Ref: http://www.phoenix-cfs.org/TrtInterferon.htm

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Dr+John+Chia+enterovirus+chronic-fatigue-syndrome

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Nora+Chapman+enterovirus+chronic-fatigue-syndrome

Very Interesting interview with John Chia, MD: http://phoenix-cfs.org/IntChia1.html http://phoenix-cfs.org/IntChia2.html

Similarly, work by Jose Montyaya at Stamford has shown that CFS caused by Human Herpes 6 (HHV-6) or Epstein-Barr virus (EBV) can be treated by the administration of the anti HHV-6 and EBV drug "valganciclovir". Again, this provides strong evidence that HHV-6 and EBV are the causes of these sub-types of CFS, not to mention the great benefit to patients.

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Dr+Jose+Montoya+Stanford+University+HHV-6+valganciclovir+OR+ganciclovir+chronic-fatigue-syndrome

Most of this groundbreaking advancement in CFS was unveiled at the International Symposium on Viruses in Chronic Fatigue Syndrome, in Baltimore, Maryland, June 2008

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Baltimore+2008+Conference+viruses+chronic-fatigue-syndrome

FOR GREAT VIDEOS OF THE SYMPOSIUM, SEE HERE: http://www.scivee.tv/node/7965/video

These are very exciting times for CFS, and for the people who suffer this condition. —Preceding unsigned comment added by Drgao (talk • contribs)

Lacking publication in a peer-reviewed journal, this isn't really the appropriate source to adjust the page. The presentation is more than a little WP:NPOV to me. WLU (t) (c) ^{(rules - simple rules)} 23:22, 29 November 2008 (UTC)

One source that I believe I've added before is:

• Chia JKS, Chia AY (2008), "Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach", Journal of Clinical Pathology", Jan;61(1):43-8 Guido den Broeder (talk, visit) 23:34, 29 November 2008 (UTC)

The main website of the foundation [38] of the conference [39] states that Anthony Komaroff has prepared a lay summary for patients [40] and that the scientific summary will be published soon. Perhaps when it is, it will be possible to search through the presentations to see if they have already been published in peer-reviewed journals. Some may be published later on, although this might take a while: for example, I remember reading about PMID 18942064 (electronically listed in October 2008) in the summary of the 8th International Association for CFS/ME conference (held in 2007). - Tekaphor (TALK) 06:53, 30 November 2008 (UTC)

Anyway, for those who are interested, the summary given at the end of the HHV-CFS conference document mentioned above ([41]): "CFS was named and defined only 20 years ago, although a similar illness had been described in the medical literature for hundreds of years. The possibility that CFS is often triggered by infectious agents has been widely discussed and debated. Few scientists have argued that a single novel infectious agent is responsible for CFS, in the way that HIV is the central and necessary cause of AIDS. Indeed, most illnesses caused by infectious agents can be caused by multiple different types of infectious agents. For example, bronchitis, gastroenteritis, hepatitis, urinary infections, and the common cold are each caused by multiple infectious agents. This conference presented evidence that a handful of infectious agents are plausible triggers of CFS. The evidence was both direct—associations between an infectious agent and CFS—and indirect—evidence of an immune response in CFS that suggests the body may be attempting to battle an infectious agent. Altogether, both proponents and opponents of the theory that CFS can be triggered by infectious agents had much food for thought." - Tekaphor (TALK) 06:53, 30 November 2008 (UTC)

Hi, WLU and Tekaphor. Thanks for reading the info I wrote on the International Symposium on Viruses in Chronic Fatigue Syndrome.

I agree with all your points: in particular that this is early days for this research, whilst awaiting peer-reviewed publication, therefore possibly too early to include in the main CFS article. It is also true that CFS is can be caused by many more infectious agents than just those considered at the Symposium. However, the viruses covered probably causally account for the majority of CFS cases, so there is significant relevance for patients in this respect.

Perhaps the most fascinating discovery publicized at the Symposium, which I briefly reiterate here, pertains to the enteroviral subset of CFS. The amazing fact is that enterovirus can auto-delete parts of its own genome, and in effect, turn into a different type of virus, the non-cytopathic enterovirus, which lives and replicates inside cells, but never (or rarely) breaks out of the cell.

Typical viruses will normally infect a cell, replicate at a rate of around 500 new virions per minute, and continue this way until the cell bursts and tens of thousands of new virions are released into the blood or surrounding tissues, ready to enter more cells, and continue this process. Sometimes a virus (for example, herpes simplex) will go into a latent state, and delay this bursting out (lysis) for some time - months or years. However, enterovirus actually becomes a different virus, capable of permanently living purely within cells. This is why it causes so many problems in CFS: enterovirus buries itself deep inside the cell, and is not easily defeated; well, that and the fact that the enterovirus has a rather nasty habit of infecting the hypothalamus and the brain stem, two brain areas known to be significantly compromised in CFS.

Furthermore, for decades there has been a mystery regarding why enterovirus seems to disappear from the blood and fluids after the initial prodrome fever, yet patients remain ill. If this research gets peer-reviewed and accepted, it will be the long-sought answer to this old mystery. It may also open avenues for a cure for this enterovirus subset of CFS, since we now know that we need to target and kill an intracellular virus, not a normal one.

This research may also have relevance to other enterovirallly-caused diseases, such as type 1 diabetes, which evidence indicates may be caused by persistent Coxsackievirus B4.

By the way, not directly related, but on the subject of the viral explanation of CFS, new research helps, in part, explain why chronic viral infection can create a depressed mood: in such infection, there is a higher level of interferon alpha, one of the metabolic responses to infection, and interferon alpha tends to lower serotonin levels, thus depressing mood. This also explains why patients become depressed during interferon alpha intravenous therapy. There are other mechanisms that create or contribute to overall depression in CFS patients, but I mention this interferon alpha one just because it is new.

In summary: it is probably too early to put the non-cytopathic enterovirus research in the main article on CFS, but it is defintely something to keep an eye on.

Drgao 01:03, 2 December 2008 (UTC)

Interesting. So perhaps hidden viruses aren't necessarily "the modern equivalent of evil spirits and swamp gas" after all. ;-) It could help to explain the upregulated gene expression involving "immunologic disease and function ... immune response, and infection" (PMID 19007540). As for infection and depression, I noticed that in some descriptions on ME, emotional symptoms and even weeping was observed especially in the onset or early stages too. I'm guessing it's more complex than serotoninergic activity, but good point. A peer-reviewed paper would be a noteworthy read. - Tekaphor (TALK) 07:07, 3 December 2008 (UTC)

Thing is, virologist are now discovering that many more diseases have a viral aetiology. This is coming to light thanks in part to metagenomics, in which the presence of a virus (or other microbe) in body tissues can be detected merely by its genetic fingerprint. Metagenomics thus makes it much easier to pinpoint a virus (or other types of microbe) hidden in body tissues. At present a whole range of diseases with previously unknown causes are now being pinned down to probable viral causes. These include: multiple sclerosis, Alzheimer's, breast cancer, obsessive compulsive disorder, motor neurone disease, certain types of depression, and many others. That chronic fatigue syndrome is also being more convincingly connected to viral aetiologies is just part of this larger picture; of finally realizing the causal connection between infectious pathogens and many diseases.

All the human species requires now is some effective antiviral medicines, or some wide-coverage vaccine, and then with luck we might say goodbye forever to a whole bunch of serious diseases.

Drgao 23:06, 6 December 2008 (UTC) —Preceding unsigned comment added by Drgao (talk • contribs)

Here is a reference to a peer-reviewed and published journal article of Dr John Chia, and the discovery of non-cytolytic enteroviruses in the stomach biopsies of chronic fatigue syndrome patients: http://www.scribd.com/doc/3155526/CFS-ME-and-the-digestive-system

Recommended reading in this article: see the Take-Home Messages on page 6.

Drgao 20:11, 12 December 2008 (UTC) —Preceding unsigned comment added by Drgao (talk • contribs)

Thanks! This is PMID 17872383. When it comes to all the diseases mentioned above, viruses could be a major or main contributing factor, rather than the sole cause. Genetics and perhaps some additional environmental factors (nutrition, exposure to toxins/pollution, neurocognitive fitness, psychosocial situations) could also play some varying role for some of them. A good way to view the complex interaction of these is to consider them in terms of increasing the probability of a type of outcome. We are getting off-topic, but still. I share your (long-term) optimism for solutions, but unfortunately it probably won't be very easy or simple. I could be wrong though, I'm just used to seeing many things as complex shades of grey. - Tekaphor (TALK) 04:16, 15 December 2008 (UTC)

Cultural references to chronic fatigue syndrome

The page Cultural references to chronic fatigue syndrome is still a stub. If this is all there is, does it need a separate page? Guido den Broeder (talk, visit) 00:32, 30 November 2008 (UTC)

Perhaps it could go in the "Society and culture" subsection of the main CFS article? - Tekaphor (TALK) 06:25, 30 November 2008 (UTC)

I agree. RetroS1mone talk 09:33, 30 November 2008 (UTC)

Exaggeration of CBT effectiveness

In the lead sentence of the CBT subsection in the CFS treatment article, it states that CBT "results in improvements in about 70% of patients". The reference given is PMID 16443043 (which in the full-text seems to cite PMID 11179154). However, the next paragraph in the article describes the recent Cochrane review which showed the statistic to be more like 40% (with the long-term effect in doubt). So I'd like to know why one single study with a much higher success rate than systematic reviews is given preference in the lead sentence as a "matter of fact" statement? Just imagine the editing furor that would occur if this was done in the subsection on essential fatty acids. - Tekaphor (TALK) 06:21, 30 November 2008 (UTC)

Well it is a secondary source in a very high journal, Lancet. WP is based from sources like that, see medrs, we do not do OR to second guess the Lancet. When you have a similar quality source saying what you agree with pls put in. RetroS1mone talk 09:36, 30 November 2008 (UTC)

The Lancet also published criticism on this very source, twice, because they base their conclusion on one article that used a deviant definition of the disorder (requiring only fatigue) and flawed methodology (they imprint on the the patients that they are getting better, and then ask by teleophone whether they feel it, instead of doing objective measurement). It is not a reliable source and doesn't reflect what is said in the related section in this article, so it should certainly not be singled out to put in the lead. Guido den Broeder (talk, visit) 10:50, 30 November 2008 (UTC)

well you can add criticism, was it letters to editor or what, but remember we go on medrs and systematic reviews are better then letters to editor. It is possible the review is wrong!! IT is still reliable til another systematic review a better one newer takes it a part. WP:RS WP:MEDRS. RetroS1mone talk 11:25, 30 November 2008 (UTC)

Reliability depends on the methodology. The guideline merely provides an indication when it comes to types of publications, it is not a law. Guido den Broeder (talk, visit) 11:30, 30 November 2008 (UTC)

Yes in real life. In WP reliability depends on source reputation. Look at methodology and decide you want it or not, that is original research. Reviews in Lancet and JAMA are good as you get on WP medrs. RetroS1mone talk 11:34, 30 November 2008 (UTC)

• Proper sourcing always depends on context; common sense and editorial judgment are an indispensable part of the process. (WP:RS). Guido den Broeder (talk, visit) 11:57, 30 November 2008 (UTC)

The word review is being bandied about here as if all reviews are equal. They are not. The Cochrane review was a systematic review. The Lancet article was an old-fashioned unsystematic review, basically a discussion piece - definitely not as 'good as it gets'. But it's being defended here by User:RetroS1mone to promote a single RCT from 2001 - in the lead paragraph, taking precedence over the more reliable Cochrane conclusion in the second para. I believe that's called sopaboxing on WP. A single RCT should never be cited as the basis of a general conclusion, as it is here, especially on such a sensitive and controversial topic. Sam Weller (talk) 13:08, 30 November 2008 (UTC)

Hi RetroS1mone, you said, "IT is still reliable til another systematic review a better one newer takes it a part." Exactly, so to reiterate, with methodological issues aside: the 70% figure was briefly mentioned in the Lancet review paper (non-systematic overview about CFS), whereas the 40% statistic is from a Cochrane systematic review of multiple studies on CBT specifically. Furthermore, the Lancet paper was published in 2006, whereas the Cochrane paper was published in 2008. Surely the latter paper has more weight according to your own statement? So, perhaps we do "question the Lancet" in this instance. ;-) _Tekaphor (TALK) 13:17, 30 November 2008 (UTC)

Thanks Sam Weller, you beat me to it! I think RetroS1mone simply misunderstood my initial objection, otherwise wouldn't have raised "MEDRS" and "OR" - Tekaphor (TALK) 13:20, 30 November 2008 (UTC)

I've changed the text to reflect the above. Guido den Broeder (talk, visit) 13:37, 30 November 2008 (UTC)

But the 70% from a single RCT is still there in the lead para. I suggest removing the Dutch figure altogether - their opinion on the general issue can remain for the time being. I'm reluctant to edit it myself, as my straightforward edits calling for citations in the Wessely biog led to personal abuse from the same CBT proponent. Sam Weller (talk) 14:16, 30 November 2008 (UTC)

I notice the cherry-picked 70% study is also cited here as if it's the whole truth: Chronic_fatigue_syndrome_treatment. Sam Weller (talk) 15:37, 30 November 2008 (UTC)

Pls do add the Cochrane it is a reliable source but do not say the other one is not a good source, they should both get cited. Pls do not call me a CBT proponent, i just see the literature says it and GET are the only good treatments proven now, and for some reason so called "patient advocates" want patients not getting good treatments bc it makes them feel better about them self bc of antique ideas about psychological problems, that is sad and counter procutive and hurts patients for selfish reasons. you should all be a shamed. RetroS1mone talk 19:41, 30 November 2008 (UTC)

I reworded both the mainpage and subpage. We shouldn't have to feel "ashamed" for demanding accurate information and representation. When looking at the literature and MEDRS that you brought to our attention, the 40% figure has much more weight than the 70% figure accordingly, so why push for a single study to be given equal status in the leading statement to a systematic review? What most "patient advocates" seem to want is the appropriate recognition for the reality of their symptoms, and effective treatments without the caveatless hype that usually accompanies them. - Tekaphor (TALK) 10:48, 1 December 2008 (UTC)

Sorry Tekaphor i get very frustrated w/ Guido and i did not mean unloading at you. You should have accurate information, you deserve that and more. 40% and 70% are from different studies, the studies have different outcome measures. Problem w/ CBT and similar treatments is, part of it is you have to give it a chance and be positive about it, literature says people that start w/ negative attitude and saying it is all physical and putting down psychological do not do as well w/ CBT. So my opinion, organizations that tell patients CBT is crap and demeaning are hurting patients. And editor that has the business, cutting everything psychological out from article bc they do not like it are hurting patients, but the main thing is, they are going against medrs that is the relavant thing on WP. RetroS1mone talk 02:25, 2 December 2008 (UTC)

RetroS1mone: The Prins 2001 study was included in the Cochrane review, so the article is wrong to state "Different trials of CBT use different measures of outcome, and some studies report higher success rates (as high as 70%[48] and 73%[49]) than those reviewed by Cochrane". And here you talk as if the 40% and 70% are just different results from 2 equivalent studies. They are not. Prins's 70% is merely one study of the 15 in Cochrane. The Cochrane weighted average of results supersedes the individual ones. You might also like to read the Cochrane comments on bias - Prins is by no means a reliable study, since there are large areas of uncertainty as to how it was conducted. Please stop trying to boost CBT's efficacy by cherrypicking one study that appears to support your agenda. Sam Weller (talk) 21:55, 2 December 2008 (UTC)

I do not have agenda, just going by medrs when that is "agenda", pls assume good faith. I do not say Cochrane and one study have same weight, that is why Cochrane comes first. RetroS1mone talk 23:41, 2 December 2008 (UTC)

Also what is "Prins2001" the Prins is a 2006 review in Lancet, that is a damn good reliable source. RetroS1mone talk 23:44, 2 December 2008 (UTC)

Since it's not 100% conclusive, since no single treatment has ever been resolved as consistently effective, why not phrase it as such? What do people think of something akin to "positive results have been suggested for X therapy, though the actual effectiveness is not conclusively demonstrated"? That's my bastardized review based only on talk page contributions. If they're both reporting some success, but neither reports complete success, they're essentially agreeing on a point, but disagreeing to degree. Leave out the actual numbers and state instead that there is some promise but much doubt. It's not like there's a deadline and this will be the final version - ambiguity is OK. I've always disliked including specific numbers and p-values - it assumes the reader has advanced statistical and methodological training, and that the numbers speak for themselves. Can we leave them out? WLU (t) (c) ^{(rules - simple rules)} 02:11, 3 December 2008 (UTC)

Well the problem is, that is true on all most all treatments for all diseases, no X therapy is conclusively demonstrated with total effect. But do we need numbers, i do not know, i agree it is easy mis-representing them, like the Cochrane review it has 15 studies, in four of them CBT is 40%, in another three it is 48%, people here are saying Cochrane says 40% but it is more complicated. I think some numbers are good, we should show a range from reliable sources, reviews ,but say also CBT is not effective in all patients, i think all the sources agree about it. RetroS1mone talk 03:45, 3 December 2008 (UTC)

No worries. I won't deny that some advocates can seem a little extreme. However, when considering how people with ME/CFS symptoms have been badly treated over the years, precisely because they were deemed a psychosocial problem, I think advocates are totally justified in their general frustrations and suspicions with psychosocial approaches, regardless of potential misinterpretations. Hyping up CBT probably increases it's effectiveness, but perhaps at the cost of false hope and lost money for the other 60%? The degree of effectiveness is in question, and this must be reflected in the article. I agree that numbers (used carefully) are good, but the text here only describes the proportion of people meeting CFS criteria that will "improve" with CBT, it doesn't state how much improvement there is.

There is disagreement with the notion that CFS is mainly a psychosocial problem that must be treated with psychotherapy, especially when the results are relatively modest and even contested or methodologically flawed. In such an environment, statements like "CBT is an effective treatment..." and "Patient characteristics predicting a poor outcome of CBT include..." are too vague and misleading without quantification. Perhaps Prins et all 2006 do their own "cherry picking" on CBT/GET (thanks Sam Weller) since it isn't a systematic review, yet it seems to be the most cited reference in the entire CFS article and the contents/citations used within are talked up as unquestionable. To explore the possible hypocracy of this stance, I notice how the Hooper 2006 review is published in the J Clin Pathol by the BMJ Publishing Group, but it's treated with disdain; at Wikipedia we are apparently supposed to view the contents as dubious because it's allegedly an anti-psychiatry rant by Hooper, yet the contents/citations of the Prins review goes unquestioned simply because it's a review published in the Lancet?

_Tekaphor (TALK) 06:48, 3 December 2008 (UTC)

Thanks Tekaphor, the politeness is VERY appreciated. If we can't agree, I suggest marshal the best arguments for and against, then request some advice from WP:MED on how to best portray it - they're very reasonable people, and there's a lot of experience there on how to portray complicated numbers in medical articles. I might be able to review and give a more reasoned opinion on the situation (not that my opinion is in any way a panacea, but at least I'll be able to understand the arguments better). Really, ultimately and sadly, I would guess that the most crippling factor is that no-one is sure of much about CFS. WLU (t) (c) ^{(rules - simple rules)} 12:00, 3 December 2008 (UTC)

Compare Prins2006 and Hooper 2006, alot of factors to think about.

What is impact factor of J Clin Pathol and what is impact factor of Lancet?

How many publications on CFS and ME by Prins and Bleijenberg and van der Meer on Medline? Hundreds.

How many publications by Hooper on CFS ME on Medline? One.

What is the expertise from Prins and Bleijenberg and van der Meer? What is expertise of Hooper? Who associate with fringe organizations and do activism, who most doing research and treatment? My opinion i am very comfortable on Lancet and Dutch group, not so much on Hooper who writes more editorial then research review outside frome own expertise area which is biochemistry. RetroS1mone talk 03:42, 4 December 2008 (UTC)

The point wasn't about Prins et al vs Hooper; your objections to Hooper supports my original objection to the claim that we don't second guess the contents of a review paper simply because it's published in a respected journal. Anyway, the way the figures 70% for CBT and 55% for GET were worded as a matter of fact betrayed the fact that these were not from a systematic review on CBT or GET, which is one main reason I questioned it. Your editing response to this criticism (selectively adding 3 primary sources that are highly favourable towards CBT) only makes the problem worse, since it appears to lean towards a POV synthesis (see my post in "Mechanism section"). - Tekaphor (TALK) 13:07, 4 December 2008 (UTC)

CBT/GET is being boosted beyond the evidence here and on various subpages, making this discussion difficult to keep track of. I have no opinion on Hooper et al. (not having read them) but Tekaphor is correct: the unsystematic overview by Prins is being used all over the place in preference to the systematic review by Cochrane. The Cochrane review gives an *overall* figure of 40% - and mentions lack of evidence for CBT at longer-term follow-up:

"The review showed that people attending for CBT were more likely to have reduced fatigue symptoms at the end of treatment than people who received usual care or were on a waiting list for therapy, with 40% of people in the CBT group showing clinical improvement, in contrast with 26% in usual care. At follow-up, 1-7 months after treatment ended, people who had completed their course of CBT continued to have lower fatigue levels, but when including people who had dropped out of treatment, there was no difference between CBT and usual care."

WLU's solution is one I agree with - cut out the naive use of percentages, and use standard terms like 'promising', 'needs further replication with different patient groups'. I'd also suggest that failure to mention the disappointing results at 1-7 months is cherrypicking. There were huge numbers of dropouts in some of these trials. Sam Weller (talk) 15:14, 4 December 2008 (UTC)

Another suggestion was to bring it up at WP:MED - there's a lot of expertise there we could tap, and most have access to full journal volumes. We should get it to the point where we agree we can't go any further, then solicit an opinion on the appropriateness, representativeness and overall weight. WLU (t) (c) ^{(rules - simple rules)} 20:51, 4 December 2008 (UTC)

Sounds like a plan. Perhaps PMID 17426416 ("69% no longer met CDC criteria") which I mentioned yesterday below in the "Mechanism section" [42] isn't covered by any systematic review because it wasn't a RCT, it was uncontrolled with no follow up. I like percentages, but only one systematic review uses them for CBT, and only for the ratio of participants which responded, not for the amount of improvement. CBT seems partially effective in some patients, is not a cure and some aspects are in question. The summary on the CFS mainpage could be like: "<Insert introduction.> CBT trial results have varied. <Insert conclusions of systematic reviews.> Patient groups dispute the efficacy of CBT trials, and the discrepency between patient surveys and published trials has been noted by the PACE trial group."

Sam Weller makes a good point, this issue involves GET too (often a part of CBT). It seems patients are blamed when CBT and/or GET fails them, and they have objections to methodology and claimed safety/efficacy. The severely affected and/or long-term in particular question if the results of GET research applies to them, especially when; (1) a large proportion with "CFS" don't experience the post-exertional component and this generally isn't required for study inclusion, (2) lack of evidence for the role of "physical deconditioning", (3) patient surveys are indicating failed or adverse effects from both CBT and GET, (4) CBT/GET trials usually use subjective outcome measures and often have other issues. (5) pathological findings in ME/CFS which worsen after exercise or are at least a cause for concern. - Tekaphor (TALK) 16:40, 5 December 2008 (UTC)

Has there been much/any research into patients who drop out of CBT trials? The Cochrane metaanalysis included them in longterm followup, and CBT was then no better than 'usual care' (= doing nothing). Pure speculation, of course, but this might still overestimate benefits in some groups, since Cochrane looked only at numbers who improved (40% CBT v. 26% controls), not the size of the improvement. If patients dropped out because they became worse during/after CBT/GET, and the size of the worsening were included, you might even find CBT/GET less good than doing nothing.

On the general topic, I found this critical but broadly sympathetic review by Dr Derek Pheby of a book about the psychiatrization of unexplained illness: http://www.positivehealth.com/book-view.php?reviewid=150 Pheby is clearly an expert in CFS/ME. Is it worth citing it, as a level-headed consideration of the claims of the 'patient groups'? Sam Weller (talk) 10:57, 6 December 2008 (UTC)

Interesting that the inclusion of dropouts negate the effect, I've read accusations that some researchers exclude dropouts from study findings. There appears to be little research about drop-outs and adverse effects. Both Cochrane 2008 systematic reviews state that no data was reported for adverse effects. The CBT Cochrane review [43] states "Patients assigned to usual care were less likely to dropout of treatment than those assigned to CBT." Dropout is further discussed on page 15 (p19 in adobe reader) and it also raises issues of selection bias and response bias in the "Quality of evidence" section. With different information from a range of sources, questioning the psychosocial approach isn't the same as denying the relevant aspects. Patients (supposedly) have secondary gain conflicts, yet the main CBT proponents are (supposedly) unbiased despite career reputations and $100-$200/session at stake?

The GET Cochrane review [44] states: "At 12 weeks, those receiving exercise therapy were less fatigued than the control participants (SMD -0.77, 95% CIs -1.26 to -0.28). Physical functioning was significantly improved with exercise therapy group (SMD -0.64, CIs -0.96 to -0.33) but there were more dropouts with exercise therapy (RR 1.73, CIs 0.92 to 3.24)." (later saying the difference is non significant). It implies on page 7 (p10 in adobe reader) that higher intensity exercise may cause higher dropout and poorer outcome. GET isn't supposed to worsen CFS, but unfortunately when it fails, instead of questioning the efficacy of applying exercise to a post-exertional illness, common patient experience is ignored as anecdotal, or like (PMID 17561700) it's recommended that consultating a psychiatrist "is necessary".

The Chambers et al 2006 systematic review [45] mentions: "Some studies of behavioural interventions have reported significant rates of withdrawal from treatment or lost to follow-up, as high as 20–40% in some studies. Withdrawals not related to adverse events may reflect patient dissatisfaction with treatment. Our review did not find any new evidence of adverse effects (sufficient to cause withdrawal from treatment) associated with GET or CBT. However, reasons for withdrawals were often poorly reported and should be investigated in more detail in future studies." The PACE trial is unlikely to resolve all these disputes either, especially considering how it's being criticized for dropping the accelerometer. CBT/GET appears promising for some and not others, while other interventions/treatments haven't received the same attention/funding. As for the book review, thanks for posting it; interesting that Dr Pheby supports most of the assertions, although it's unlikely that this will be accepted here as a "reliable source", especially when the author (M J Walker) is much disliked at the Simon Wessely talkpage. ;-) ... _Tekaphor (TALK) 03:22, 8 December 2008 (UTC)

The range of opinion and findings in medrs is important. Cochrane says 48% improvement in 3 studies, 40% in 4 other ones. A review in the Lancet says 70% improvement. One study says up to 69% recover not just improve. All medrs. first two both secondary sources by recognized experts just like medrs says. Sam Weller, "you might even find CBT/GET less good than doing nothing," that is not medrs it is personal speculation. A website, that is not medrs. Speculation about drop outs is speculation and of course when people drop out from treatment, any effective treetment they will not get better. Lots of places where people can speculate and give own opinions about medical research on message groups, patient websites and stuff. WP and WP talk pages is not where you do it. Pls, people when yhou want to speculate do it somewhere not on WP, it is not a soapbox for your personal ideas about an illness. Thx, RetroS1mone talk 03:56, 8 December 2008 (UTC)

RetroS1mone: Sorry you didn't understand I was asking if a researchable hypothesis (CBT is worse than doing nothing if the extent of adverse effects is completely accounted for, including in all dropouts) has been covered in the literature. Tekaphor did understand, and looked for the data. I have no opinion about CBT for CFS, except hoping patients get the best treatment. Concerns about under-reporting of adverse effects of any and all treatments hardly make a soapbox. Tekaphor makes another good point about the possibility of COI among CBT researchers. Sam Weller (talk) 15:29, 8 December 2008 (UTC)

If the inclusion of dropouts negates the statistical significance of CBT on the entire group (not merely reduces it), despite dropouts being in the minority and generally counting as neutral rather than negative, this suggests a surprisingly modest effect for CBT. As for the contrasting "69% no longer meeting CDC criteria" study (the abstract doesn't give baseline severity, but a stricter definition of "recovery" brings that figure down to 23%), this is the only trial mentioned in the article which isn't already covered by a systematic review, so how well does this non-RCT with no followup stand up to systematic reviews on the much cited WP:MEDRS? Perhaps not very well. Anyway, there is a whole subpage to include the full-range of findings, but the "Psychological therapy" section on the mainpage has recently bloated up in selective favour of CBT. Back in early 2007, the CBT/GET dispute was resolved using a balance of both the positives and negatives mentioned in the systematic review(s). - Tekaphor (TALK) 06:35, 10 December 2008 (UTC)

I'm equally dismayed by the uncritical hyping of CBT. People would not stand for similar boosting of vitamins or fish oils, so what's so special about Vitamin CBT? And apologies for not objecting earlier to the 69% - in spite of my scepticism about the headline figure, which turns out to be 23%. I assumed it came from an RCT, not a mere cohort study. With the reporting deficiencies Tekaphor points out, it doesn't stand up, and ought to be removed. Sam Weller (talk) 18:24, 10 December 2008 (UTC)

When you say "uncritical hyping of CBT" you are taking a side sorry Sam Weller, that is not "I have no opinion about CBT for CFS". I am a person that has no opinion about CBT for CFS just what I am reading in journals like Lancet. See problem is, there is not reliable sources on vitamins and fish oil, there is reliable sources on CBT. Who cares what article said when it was edited in 2007 by a group of ME agenda patients, it is improtant now it is based on medrs. Add stuff from medrs, that is great, if you do not want do that, then do your speeches some where else, pls, I am not trying on being mean, it is just not right for WP arguing about your opinions, pls use medrs. Thx RetroS1mone talk 06:13, 13 December 2008 (UTC)

Wouldn't it be more productive to address Sam's concerns rather than speculating about motives? WP:MEDRS doesn't say Lancet papers are unquestionable, and instead seems to suggest that systematic reviews trump the specific Lancet paper in question. It also states "Make readers aware of any uncertainty or controversy."; the systematic reviews have positive conclusions but are generally riddled with caveats (which are apparently glossed over here). The systematic reviews cover all primary studies in question, except one uncontrolled study with no follow-up. There is plenty of room on the subpages for the full-range of research, but both the "Mechanism" and "CBT" sections are in danger of bloat. But now I'm just repeating myself. - Tekaphor (TALK) 04:14, 15 December 2008 (UTC)

Moved from article

I took from article, I do not think Ramsay is notable, there is only one RCT i see that used it and it also used CDC 1994. Also this is how it should be called, London criteria, that is how the literature calls it.

• The London criteria, based on a definition of myalgic encephalomyelitis by AM Ramsay, who had investigated an outbreak of an unknown illness at the Royal Free Hospital in 1955.

thx. RetroS1mone talk 09:38, 30 November 2008 (UTC)

Ramsay didn't research CFS. He is notable for his work on myalgic encephalomyelitis, so that's where he should be mentioned. The best reference would furthermore be to the definite description of his definition, which was published shortly after his death in

• Ramsay AM, Dowsett EG, "Myalgic Encephalomyelitis -- Then and Now: An Epidemiological Introduction", in: Hyde (1992), chapter 4, pp. 81-84, along with a reprinted article of Ramsay's research with this definition. Guido den Broeder (talk, visit) 11:06, 30 November 2008 (UTC)

Well except their is not reference to it like there is to "London criteria" in Lancet et cetera. Guido you know alot of things, but we go on medrs at WP, may be Wikisage is different?? RetroS1mone talk 11:19, 30 November 2008 (UTC)

Wikisage is certainly different, for instance it allows an article on ME, but not regarding reliability. You are far too selective in your use of WP:RS. Guido den Broeder (talk, visit) 11:23, 30 November 2008 (UTC)

Perhaps we should not cite the Ramsay criteria precisely because they are intended for the diagnosis of ME to the exclusion of CFS. I agree with RetroS1mone that WP:MEDRS would grade Hyde's book as a very poor source. I don't think we need to discuss editorial policies of other wikis on this talkpage. JFW | T@lk 12:32, 30 November 2008 (UTC)

JFW, can you please explain this edit [46] (the removal of PMID 17293137 as "removed source that doesn't back up FM claims"). The abstract states: "In the absence of obvious biochemical/metabolic abnormalities and in the lack of neurological symptoms the complaints are frequently labelled as fibromyalgia or chronic fatigue syndrome." I don't have access to the full-text, did you remove it because they didn't use an appropriate citation? - Tekaphor (TALK) 10:56, 1 December 2008 (UTC)

That is the most tangential reference I have ever seen. It is not an article on CFS or FM. It is an article about MERRF syndrome, specifically about those with the mtA8344G mutation in mitochondrial DNA. I suggest a reference is found that meets WP:MEDRS criteria. JFW | T@lk 00:07, 2 December 2008 (UTC)

OK. - Tekaphor (TALK) 13:18, 4 December 2008 (UTC)

Note to all

comment unrelated to improving the main page hidden - please do not edit, take concerns to the appropriate users' talk page

Since it is apparently alright for other users to modify my talk page contributions, this is my last comment on a talk page other than my own. I hope it will stay untouched long enough for more than one user to read it. Guido den Broeder (talk, visit) 00:53, 3 December 2008 (UTC)

As far as I'm aware it's not permitted to modify anyone's comments on a talk page, except to delete them if it's your own talk page. Can you point to the edit where this happened? --sciencewatcher (talk) 01:21, 3 December 2008 (UTC)

SW, don't bother playing the game. In the past, Guido has said similar things many times - witness his "move" to wikisage. The more important point is, he won't be posting on this, or any other, talk page. Unwatch his talk page, and he has voluntarily removed himself from any controversial edits. Ever tried to make a complex point using only edit summaries? Do it often enough and you're likely to be blocked for edit warring. WLU (t) (c) ^{(rules - simple rules)} 02:04, 3 December 2008 (UTC)

I suggest this thread be immediately archived as a violation of WP:TALK (not a forum) and as a disruptive post per WP:POINT. Verbal chat 15:08, 3 December 2008 (UTC)

If we just let it die, it'll get archived eventually. If we archive it right away, we get squaked at for, God knows what, probably stifling free speech. The best way to move forward - start a new thread below this one to discuss improvements to the page. It's patently obvious that this is a waste of time and not actually contributing to the improvement to the page. Happens all the time, but over-reacting is fuel for the fire. Anyway, I've divhid it, that's the next best thing. WLU (t) (c) ^{(rules - simple rules)} 15:33, 3 December 2008 (UTC)

Mechanism section

Tekaphor, you added the original text, what do you think of my rewording? I'm again trying for a more generic presentation as well as a bit of a wikification. The year of publication and specific methodology is useful and relevant to the editors of the page, but to arguably less so to the reader - the only time I'd think Brittanica would include info like this would be if it were the study that revolutionized a field. And the only way we'd know this would be retrospectively. Ergo, I've taken out the year and methodology tried to maintain the relevant ideas and links.

Also, the mechanism section seems a bit of a mess - does it need a reorder? Is it getting too specific? Should specific study results be deferred to the main article? WLU (t) (c) ^{(rules - simple rules)} 21:10, 3 December 2008 (UTC)

WLU I am agreeing we should not go back to the old way of taking every primary source and putting it in as "WLU et al in a 2007 study said this, and RetroS1mone in a 2008 study responded this" it is to prone on synthesis, that is how these pages got in a mess in first place. RetroS1mone talk 03:23, 4 December 2008 (UTC)

WLU, your wording is fine. Perhaps it can be further reduced to only the immune/infection aspect since it was added in support of the immune activation hypothesis. As for which type of cell death, I cannot say (from memory, I think both types have been reported in other gene expression studies). I'm not sure how large the summaries of subpages should be; some articles (at Wikipedia in general) have rather large summaries, but might be proportionate to the size of their subpages. The summaries on the CFS article are relatively small. The brief summaries on the main page should simply be a condensed generalized version of the subpages (which themselves need work), right? - Tekaphor (TALK) 13:01, 4 December 2008 (UTC)

RetroS1mone, the issue of synthesis is difficult to pin down and it could be argued that the entire article is a guided synthesis where the main difference in content to an outright public synthesis is additional wording like "studies suggest", "so and so said", etc. Using secondary sources doesn't preclude synthesis either. The "Mechanism" section may indeed be prone to synthesis, but what about your recent work on the "Psychological therapies" section where only the most optimistic CBT statistics from 3 primary sources were added? If Cochrane didn't review these primary sources as stated, perhaps the question should be why, since it's a very recent review. Besides, we have the Chambers et al 2006 systematic review on the subpage (abstract: PMID 17021301 | full text: [47]) which included all these studies except for PMID 17426416 ("69% no longer met CDC criteria") which was published the following year. At this forum I have witnessed many papers being questioned/removed because a systematic review took preference; if someone had added 3 primary sources on studies casting doubt on CBT, I'd bet real money that there would be citing of "MEDRS", "OR", "SYN", "NPOV" etc.

The overall evidence suggests that CBT is at least partially effective in some people that meet CFS criteria. That's not really in dispute; what is however, is the degree of effectiveness, the outcome measures, the criteria used, and possible publication bias (all mentioned by systematc reviews if I remember correctly). MEDRS says "Make readers aware of any uncertainty or controversy." Perhaps some people would prefer to blame the CBT inconsistencies on patients rather than sloppy science, but there is controversy for reasons that go beyond the misleading accusations that "patients/advocates simply can't tolerate notions of being mentally ill". Fashionably ignoring the mind-body problem doesn't make it go away, and citing hypothetical inadequacy of the mind vs body dualism doesn't invalidate the criticism (or conflicting evidence) towards the psychosocial model of CFS and the claimed success of CBT/GET. Obviously the subject is complex and there is a whole separate subpage dedicated for this, so it should be moved there and the brief summary on the main page should simply be a condensed generalized version of the subpage.

_Tekaphor (TALK) 13:06, 4 December 2008 (UTC)

Note that MEDRS also cautions us regarding the use of primary sources - Wikipedia:MEDRS#Respect_secondary_sources (secondary sources for medical topics are summary/review articles, the results of an experiment are primary). Regards the sub-sections that have main articles, I'm certain there's guidance somewhere (I'd have to dig), but I would suggest the best option is to get the main article to the best state it could be, then adjust that lead to be in sync with the body of the article, then essentially port that lead into this article. The lead and the CFS summary should basically do the same thing - summarize the state of the art.

If we're really not sure about the CBT, the best way to move forward if we're not using WP:MED, would be a WP:RFC. Outside input can be used to settle disputes, it's also good for simply generating outside opinions and would also force each 'side' to re-state their positions. If we can agree that CBT is effective in some circumstances and some people, but not always and overall it's uncertain (RetroS1mone, do you agree?), that may be the best way to portray it. Promising, but unproven, is a valid way of portraying results. I'll have a look at the section and sources to see if I have an opinion. WLU (t) (c) ^{(rules - simple rules)} 21:12, 4 December 2008 (UTC)

A couple points

• If Prins' statement that Both "neuroticism and introversion" may predispose people to getting CFS is speculation at odds with research, then the research that it is at odds with should be presented for discussion.
• The CDC is explicit that there are no tests for CFS, so it is incorrect to state that this is not in source. See here.
• From here - "The other side of the coin is that, in accepting an organic explanation for their condition—which might be viruses, toxins, infections, allergies and so on—some sufferers equally vehemently reject psychological causation and with it psychological treatments." That seems adequate for Chronic_fatigue_syndrome#Mechanism. If not, please discuss here because two editors have now reverted to some form of this sentence. WLU (talk) Wikipedia's rules:^simple/_complex 14:55, 12 December 2008 (UTC)

When you do not quote exact word from a source, a tendentious editor says that is not what source says or that is not in source, he says that bc he does not agree with sources like Lancet, just his tendentious editing. It is very sad we are talking aobut one editor here, without these disruption we could be improving article but now we are defending all the time sources like Lancet, it is very wierd and surealist. A statement in a Lancet secondary review source, an editor does not question that based from OR, but that is what a tendentious editor does most of time. RetroS1mone talk 06:22, 13 December 2008 (UTC)

Also note - this edit inserts a paper that references disease processes in general, and doesn't seem to justify a specific relationship to CFS - it's not mentioned in the abstract or title. So I removed the section. WLU (talk) Wikipedia's rules:^simple/_complex 04:08, 14 December 2008 (UTC)

Yes and we should not have long quote from primary source, its own paragraph. RetroS1mone talk 04:10, 14 December 2008 (UTC)

Follow-up regards this diff; the journal is not pubmed indexed (at least, I couldn't find it), it's older than the Lancet, it's not a review as Prins2006 is, and we're discussing a qualification below of that statement below. Also, if it's in the Lancet, it's got hefty support such that it should take precedence over Journal of Mental Health. Plus, we're specifically enjoined to respect secondary sources - no debunking reviews with primaries. WLU (t) (c) Wikipedia's rules:^simple/_complex 20:42, 17 December 2008 (UTC)

It's own "paragraph"? It was a single sentence! This area will always be under some dispute while the proper range of research isn't presented. It's inappropriate for either "side" of the debate to insist on only a single source to represent a complex issue (eg psychological aspects). - Tekaphor (TALK) 03:02, 27 December 2008 (UTC)

Neuroticism and introversion statement

Prins' statement is "In a review of personality characteristics, neuroticism and introversion have been reported as risk factors for the disorder.[48]", which refers to a paper co-authored by Prins which I haven't found on PubMed; [Hoogveld S, Prins J, de Jong L, et al. Persoonlijkheidskenmerken en het chronisch vermoeidheidssyndroom: eenliteratuuroverzicht (Personality characteristics and the chronic fatigue syndrome: a review of the literature). Gedragstherapie 2001; 34: 275–305.] In regards to the recent edit warring, in the full text of the older Dubbo paper (PMID 16950834) it's clear they investigated psychiatric factors. More specifically to the current issue, they measured for neuroticism; the overall conclusion was that psychological and psychiatric factors weren't predictors of post-infective CFS (neuroticism was only associated with more severe mood disturbance). The Australian 2002 clinical practice guidelines state that there is conflicting evidence of the role for personality factors.([48]). A more recent (published 2007) review on personality in CFS (PMID 17350740) found that the studies ranged from no evidence of to major differences, they stated that although personality seems to play a role in CFS it's difficult to draw general conclusions, and they argue that this is partly due to the "diversity and heterogeneity in study methods, patient populations, control groups and CFS case definitions."

I started looking into this a while ago and what I found is typical of CFS research, mixed results possibly leaning towards an association in some situations but with a bunch of caveats, which is why adding simple statements without clarification or comparison is problematic. It's also important to distinguish which "psych" factors we are talking about; they aren't all the same. On the specific issue of prior and current neuroticism/emotionality and introversion-extraversion in CFS, the results of a study using a twin registry (PMID 17088507) and CDC criteria states "Higher emotional instability and self-reported stress in the premorbid period were associated with higher risk for chronic fatigue-like illness in matched case-control analyses (odds ratios, 1.72 and 1.64, respectively). In co-twin control analyses, relative risk of emotional instability decreased to 1.02 whereas that of stress increased considerably to 5.81. There was no association between extraversion and fatigue." Another twin study (PMID 18624602) investigating 13 physical conditions (including CFS, but without accessing full-text I don't know how specifically or accurately this applies to CFS) found higher levels of prior neuroticism increased the likelihood of having a "physical condition", "with some associations attenuated when controlling for familial similarity."

A study on ME (PMID 1559114) found that personality scores displayed less extraversion and less psychoticism, but pointed out (in 1992) that the "direction of causality remains to be clarified" (abstract doesn't mention neuroticism, but full text might if using Eysenck's P-E-N model [49]). A study using the Holmes et al 1988 criteria supports the role of current and possibly prior neuroticism (PMID 1876640) but points out that a subgroup (20/58) "reported a lack of psychological symptoms or emotional disturbance contrary to the overall trend for the CFS sample". A study (PMID 8736462) found that those with concurrent depression (34%) accounted for most of the personality pathology in CFS. A study (PMID 9788031) found that "Obsessional and healthy neurotic defense levels predominated, which differs from historical comparison groups with dysthymia and panic disorder." Authors of a study (PMID 10340240) concluded that "Our results suggest that high scores on neuroticism and low scores on extroversion in CFS could be a reaction to chronic illness." I've mentioned the "Dubbo" study above, and a different study (PMID 8142830) had previously also found that neuroticism at CFS onset didn't predict outcome, with another study (PMID 12442562) finding that the postinfectious CFS group were "social extroverts" while the noninfectious CFS group were "neurotic and introspective". Two studies found similar personality profiles (including neuroticism) in CFS compared to multiple sclerosis (PMID 12670610) and rheumatoid arthritis (PMID 10616232).

_Tekaphor (TALK) 03:19, 14 December 2008 (UTC)

Tekaphor you are doing alot of good research, you should write about it, problem is WP is not where to do. Wikipedia medical articles use secondary sources. Prins 2006 is secondary source in may be best medical journal in World. It is may be totaly wrong and you are totaly right but it does not matter on Wikipedia, when you have problem on a secondary source write to the Lancet editors, if they retract then you can remove stuff from article. You are acting like this one sentence is a personal insult, it is not. It is not saying every person with CFS is neurotic or introverted, it says they are predisposing factors. Pls try to keep personal emotions from distort your NPOV on topic. Thx RetroS1mone talk 04:15, 14 December 2008 (UTC)

I would step back from the statement that Tekaphor is doing this purely out of personal motive; there's a lot of text there, and as impressive as the Lancet is, it's not everything. Does anyone have an electronic copy they could forward to me? The other thing I'd be interested in is the two responses to the article that pubmed points to (pubmed 16698404 and 16698406). Tekaphor - ultimately the authority for the statement comes from the Lancet, not the journals that Prins cites (the oversight is from their peer review board; if a statement passes that peer review without retraction, then it bears the full authority of the journal). HOWEVER! that doesn't mean we report it blindly. I read the statement in the article itself as quite mild ("High scores of neuroticism and introversion on psychological tests have also been associated with a predisposition to developing CFS.") but that doesn't mean other research shouldn't be presented. The most recent and best of the sources you cite above seem to be PMID 16950834, this isn't bad, PMID 17350740 would also be a good qualifier, PMID 17088507 also. CFS is controversial and ill-understood. Even with the lancet, there's still plenty of material that would be useful for demonstrating that not everyone believes the same thing. Can my more expert colleagues suggest a qualifying wording or sentence that uses the best of these references to indicate the some of the issues with the personality? Something along the lines of "Though personality traits have been associated with CFS (prins perhaps?) the association is not well understood and questions remain about causality, possible sub-types of CFS and..." works for me, but I will be the first to concede that I'm not guaranteed to be right. I would keep the statement but also adjust to it's clear that the association is not proven. WLU (talk) Wikipedia's rules:^simple/_complex 13:11, 14 December 2008 (UTC)

RetroS1mone, if I was so insulted about the neuroticism and introversion statement as you suggest, why would I also include supporting evidence for it? I presented notes of what I found, not copied it into the article, and I challenge you to demonstrate that I pushed a one-sided argument. Understanding a subject matter requires actually seeking a wide range of information and then deciding the appropriate weight, not simply selecting a "reliable source" to the exclusion of everything else without even looking into the issue. As far as I knew, Wikipedia is more about the acquisition of knowledge than bureaucracy; of course WP policies/guidelines apply, and I did present two secondary sources in the first paragraph. I never called for the outright removal of the Prins paper, and I find it ridiculous that demanding qualifiers for simple statements about a complex subject is being interpreted as emotional POV pushing.

The recent referrals to the unquestionableness of a single Lancet paper for several aspects of CFS are starting to wear a little thin; the citing of WP:MEDRS and blaming "patient agendas" for any opposition, these aren't really convincing. You seem patronizing about the value of secondary sources, but yourself added several primary sources on CBT for example, all much more optimistic than the relevant systematic reviews, none that were negative or critical, and giving them weight. Over time I have done edits both in support of and critical of CBT depending on the situation (perhaps a blunder), so I'm not buying speeches about how I'm biased and you're unopinionated. Anyway, claims of being "unbiased" are so common they are meaningless, yet co-presentation of conflicting information (which I make some attempt at) seems suspiciously rare by comparison despite purported stances of WP:NPOV.

_Tekaphor (TALK) 04:11, 15 December 2008 (UTC)

WLU, thanks for a more reasonable consideration. My main expectation is that if the research is diverse and conflicting, this article should say so and why, accordingly, as WP policies/guidelines allow. Perhaps the current wording isn't too bad, and I never said it should be totally removed, but the subject needs the qualifiers like you suggested, and maybe the wording was different before the edit warring between Retro and Guido and whoever began? I had hoped that by presenting more sources, the debate between them would be aided by other research rather than solely fighting over a single source. - Tekaphor (TALK) 04:11, 15 December 2008 (UTC)

Do you mind if I take the lazy position of "copy editor"? Suggest a qualifier you think is fair to the N/I statement/section, I'll have a look, suggest changes, if I can't think of any I'll paste it in? Frustration leads to anger, which leads to polarization which leads to bad faith instead of good; let me mediate between RetroS1mone and you if need be, I think both of you are doing good work, and I'd like to keep you both on the page. I really would like to de-escalate the conflict between the two of you, as I think you both represent the two sides quite reasonably and the page would be well served by you working together instead of against each other. WLU (t)/(c) Wikipedia's rules:^simple/_complex 13:52, 15 December 2008 (UTC)

Incidentally, an anon has mentioned the causality of results - did CFS cause the N/I, or did N/I cause, contribute towards or exacerbate the CFS? I loosely remember a similar comment in one of the above sources (I think, I could have come to that conclusion myself). Is it explicit somewhere? WLU (t)/(c) Wikipedia's rules:^simple/_complex 14:08, 15 December 2008 (UTC)

CAM for CFS

I noticed that Guido addded CAM as a treatment for CFS, and that his source (NIVEL, a Dutch research center) was questioned. I've heard before that CAM has some evidence for CFS. It took me about two minutes to find the University of Michigan's overview of the CAM evidence. It rates the evidence with 2/3 stars, indicating that it is preliminary. Vitamin B12 and magnesium are reportedly low in CFS patients, and other supplements have been tried with mixed success (based on a very quick reading). Thoughts? Can this page be cited, or some of the research within it? II | (t - c) 01:21, 21 December 2008 (UTC)

As I said at WP:RS/N, the general overview from the Lancet is a poor source for specifics. Better to go to more specific reviews. In that vein, I found PMID 18831878 (open-access full-text). PMID 18537652 is another one. PMID 16444659 focuses on botanical treatments for CFS. II | (t - c) 07:03, 21 December 2008 (UTC)

The NIVEL source is essentially a survey of patients and organisations, and does not provide actual medical evidence that CAM might be effective. I would rank it very low on a WP:MEDRS scale - it is a primary survey not published in a peer-reviewed source that indicates that 44.5% of CFS patients have consulted CAM providers within the last year. For Guido that might be a satisfactory source, but it is simply insufficient for the purposes of this article.

The most systematic review of CFS treatments is Chambers et al (PMID 17021301) which we are already quoting. Chen et al is hypothesis-generating only and does not propose treatments as such. Same goes for Gur & Oktayoglu. Tharakan & Manyam is not free, so I can't review it, but it does not seem to be a systematic review.

The UMich source is very hard to judge on its merits. It is attributed to Healthnotes and was last updated in April 2007. The exact provenance of its recommendations is difficult. Two stars means "contradictory, insufficient, or preliminary studies suggesting a health benefit or minimal health benefit". One star is "an herb is primarily supported by traditional use, or the herb or supplement has little scientific support and/or minimal health benefit". If these were studies with non-CAM compounds, would they be recommended? I don't think so. JFW | T@lk 13:44, 21 December 2008 (UTC)

Wikipedia is not all about recommended or entirely proven therapies. The use of CAM by CFS sufferers is notable and should be decently well-covered. The reason that these CAM therapies may be recommended despite strong evidence is that the adverse effects are generally low, and there really isn't much that works for CFS sufferers. Given that, some reliable sources may recommend trying these sorts of things. I'll look to see if there are better sources, since the UMich source isn't that great. Still, you can't say that it's all that biased -- it gives them two stars, and if it was included, it should be presented as two star evidence.

Incidentally, I presented that hypothesis-generating paper because there seems to be some controversy on this page over how psychosomatic CFS is, and based on my shallow reading so far, the term neurobiological appears more popular than psychosomatic.

Here is a link to a paper titled "ALTERNATIVE AND INTEGRATIVE TREATMENT OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME". It covers both fibromyalgia and CFS fairly well. II | (t - c) 19:59, 24 December 2008 (UTC)

Does NIVEL cover the use of CAM by Dutch-only patients, or is it greater breadth? If it's not published by a peer-reviewed journal, I'm reluctant to use it, and I can't even read it 'cause it's in Dutch. What journal is the zen-tai article published in? Is it pubmed indexed? I can't find it after a brief search. Also, fundamentally the medical community is unsure of CFS from what I've seen - no one knows what causes it, what cures it, if it's one condition or several, and what to call it. There are multiple competing hypotheses and we should discuss them; when it comes to neurobiological or psychosomatic, I'm not certain if one wins out more than the other. My inkling is that people are leaning toward both - it's a biological condition with how one thinks about it and deals with it having a significant impact. WLU (t) (c) Wikipedia's rules:^simple/_complex 22:03, 24 December 2008 (UTC)

The zen-tai article was published in Clinics in Family Practice, basically a mainstream journal published only until 2005. Did you read the article? It takes a fairly mainstream perspective, saying that CBT and GET are the most proven therapies. It is not PubMed-indexed, but I don't think that should disqualify it. If you'd prefer a PubMed-indexed review, there is Werbach MR (2000). "Nutritional strategies for treating chronic fatigue syndrome" (PDF). Altern Med Rev. 5 (2): 93–108. PMID 10767667. {{cite journal}}: Unknown parameter |month= ignored (help) I'm not a fan of using foreign-language articles unless absolutely necessary, either. Werbach covers (from a dated approach) some interesting things that this article doesn't cover: the abnormally-shaped erythrocytes, neurally-mediated hypotension, and the relatively high levels of magnesium deficiency observed in large samples using the most reliable test (magnesium loading). The erythrocyte abnormalities, despite being reported in Lancet in 1987, don't seem to have been investigated that much (articles citing the paper). Niblett 2007 has an interesting overview. Afari 2003 covers the neurally-mediated hypotension angle and CAM briefly in more of the refuting vein.

It seems like this article has a fair amount of repetitive citations and vague, almost vacuous language. Seems like it might be better to focus on getting as much as possible from the decent freely accessible articles. II | (t - c) 07:39, 27 December 2008 (UTC)

If you look at the history of the articles on CFS, from the middle of this last year a great amount of specific and attributed reliably sourced information on the physiological basis of CFS has been removed from the articles. Some of the information may have been wordy. There had just been a major effort to split the article into sub-articles, and many editors were burned out I believe. But the information could have been condensed without major changes in the POV of the material. During the removal of information on the physiological basis of CFS, much more weight has been added to the psychologically oriented basis of CFS without nearly as much attribution as there had been previously. Ward20 (talk) 08:23, 27 December 2008 (UTC)

I've reviewed the history and I see some of what you mean. Edits seemed in good faith and necessary, but things got overly trimmed -- the symptoms section got cut down far too much, for example. I noticed that Hooper 2007, a notably anti-somatic take on CFS, was "unjustifiably" retracted, leading to its removal from the article. It has since been restored with an apology from BMJ (who said it was due to a technical error). It should be reintroduced. I also saw my own edit to this article back in July, when I tried to note that enteroviruses are a big thing, and was promptly reverted by Jagra who said it needed to go in a subarticle. Hooper's article notes that Chia 2005 says that "recent studies have confirmed the role of enteroviruses". There are a limited number of major biological things going on here which can be mentioned specifically. II | (t - c) 10:50, 27 December 2008 (UTC)

[unindent]After the articles were split, some of them were merged again, and that also might have contributed to the removal of some bits. I don't think there is too much weight to the psychological basis. But obviously if you don't think there is any psychological basis to CFS then the article will appear to be biased in that way. Some items, such as Hooper, were probably deleted because of not being reliable sources. AFAIK there is no evidence of enteroviruses in CFS published by a reliable source - that's why it isn't in the article. Also, there appears to be vandalism by a plusnet ip who was previously vandalising the fibromyalgia page. The same user obviously has an issue with me because a while ago he went through the fibromyalgia talk page and deleted all my comments! Perhaps a banned user? My suggestion is to just revert any changes by a plusnet ip if there is any doubt. I think it is highly unlikely that wikipedia will range-ban the entire plusnet ip range. --sciencewatcher (talk) 04:47, 28 December 2008 (UTC)

Eh? I just pointed out that Chia 2005, in a review in the Journal of Clinical Pathology, says that "recent studies have confirmed the role of enteroviruses". Surprised that the sciencewatcher didn't pick that one up. Hooper 2007 is also published in BMJ Group's JCP. II | (t - c) 21:02, 28 December 2008 (UTC)

Yes, I saw that, but the Chia paper isn't an authoratitive review. It is just a review by a researcher working at "CEI Research Center" which I assume is Chia's own company. Also if you look at the "EVIDENCE FOR ENTEROVIRUS INFECTION IN CFS" section in his article you'll see that the evidence is weak - some studies show positive results and some negative. And I'm not sure if Hooper is a reliable source. Just because something is published in a reliable journal does not automatically mean the article or author is automatically a reliable source. The Hooper "review" is mostly a rant, talking about the "possible imminent extinction of modern psychiatry". He also says HIV/AIDS is an "overlapping syndrome of uncertain origin". What?!?! HIV/AIDS is uncertain? And it is overlapping with CFS? And he says "An ill-founded alternative approach offers a common psychiatric explanation for these syndromes". Clearly the "review" is just an anti-psychiatric POV rant and I'm very surprised that the BMJ actually published this nonsense. --sciencewatcher (talk) 00:38, 29 December 2008 (UTC)

Surely he meant that the symptoms are overlapping, although the inclusion of MS and HIV/AIDS should have been better differentiated. The section starts by discussing "syndromes of uncertain origin" (citing "Merck Manual, Millennium Edition, Merck, Sharpe and Dohme,1999.") These seem to be "OPs, GWS/I, MCS, FMS, CFIDS" in Table 1. I'm guessing he later adds MS and HIV/AIDS to the table to demonstrate the similarities between symptoms of ME and other diseases of a neuro-immune or infectious nature. Conversely, an inaccurate pro-psychosocial POV rant is used in the CFS article [50], although it's for the "Social issues" section so apparently sources don't need to be as accurate or reliable there. Niall McLaren actually raises interesting criticisms about psychiatry and the biopsychosocial model, but he goes too far when dismissing it. - Tekaphor (TALK) 07:22, 29 December 2008 (UTC)

MEDRS is "written by an expert in the field" The Hooper review is from reputable publisher but Hooper is a amaetuer in the field he is a biochemist who did not publish about CFS before he has not research on CFS. He is not an expert in the field. REview is not medrs and should not go back in. RetroS1mone talk 05:00, 31 December 2008 (UTC)

POV and weight issues

OK, here is an example of why I think there are some WP:POV and WP:WEIGHT issues. This is a specific, but there are many similar items like this thoughout all the articles. Look at the current Pathophysiology of chronic fatigue syndrome article about enteroviruses.[51]

Enteroviruses like the Coxsackie virus and Polio virus have been associated with symptoms resembling CFS. The validity and implications of enterovirus findings are controversial.

About 6 months ago the Pathophysiology of chronic fatigue syndrome article looked like this [52].

Enteroviruses

Often, there is evidence of enteroviruses, e.g. the Coxsackie virus. The type of enterovirus varies, which can affect symptoms. Polio virus is one enterovirus associated with ME, in earlier times of outbreaks, before polio vaccination was common, paresis (paralysis) was often found in ME patients; this is no longer the case. Stomach biopsies of 80% of CFS patients showed the presence of enteroviruses in one study, as opposed to only 20% among controls, and nearly all biopsy specimens had microscopic evidence of mild chronic inflammation. Hyde and others suggest that these enteroviruses had been latent to be awakened by another, triggering infection, after which the immune system stays chronically active to combat the enterovirus.

Reviews report different laboratories from Europe and, recently, from the USA have found enteroviral RNA in the tissues, including peripheral blood mononuclear cells, muscles and stomach, of patients with CFS. Chronic viral persistence through the formation of stable doublestranded RNA reconciles the two opposing observations of the past two decades: – the absence of live virions in chronically infected patients and animals and – the presence of enteroviral RNA in the blood or other tissues of patients.

The previous wording may have needed some editing, but the cited studies talk about finding evidence of enteroviruses in CFS and ME patients, yet the present article is weasel worded and says, enteroviruses "have been associated with symptoms resembling CFS." Also, the present statement, "The validity and implications of enterovirus findings are controversial." has as its source an editiorial commentary [53] that states, "CFS is a common problem and any clues regarding its cause are welcome. The authors need, however, to demonstrate enterovirus within the muscle fibres by in situ PCR; prove that viral persistence alters the metabolic machinery of the cell; and show that such abnormalities cause clinical symptomatology." It certainly would be nice to spend the half billion dollars that would entail. The hypothesis of the psychological basis of CFS is certainly not held to the same standards. The previous enteroviruses section was gutted of material from reliable sources, weasel worded, and an editorial commentary given more weight than review studies. There may even be some new enterovirus studies [54] that weren't in the older version. Ward20 (talk) 08:25, 28 December 2008 (UTC)

Are there any authoritative reviews that discuss enteroviruses? I thought it was just a fringe theory, and therefore the current short paragraph is probably appropriate. At most it seems to be similar to herpes, i.e. CFS patients are more likely to have it, and it might be a trigger, but it isn't thought to be the cause of CFS. Most likely the compromised immune system in CFS patients just makes them more susceptible to infection by a variety of agents. The psychological theories of CFS have been published in authoritative reviews that carry a lot of weight, but I haven't seen the same for enteroviruses. --sciencewatcher (talk) 16:15, 28 December 2008 (UTC)

Interesting example Ward20; I agree with your assessment (welcome back, BTW).

Sciencewatcher, like in this review (PMID 16978917), I would consider enteroviruses as a part of the broader infectious hypothesis. Another review (PMID 12562565) states that " ... enteroviruses, and retroviruses, among others, have been proposed as etiological agents in chronic fatigue syndrome". An older review published in 1999 (PMID 10583715 | full text: [55]) states that "Another type of virus which has drawn a lot of attention is the enterovirus group [60±62] because clinical symptoms in CFS are similar to those found in enterovirus infections. So far, there is no clear evidence for an active involvement in studies based on either serology or muscle biopsies [60, 63±66]"

Since then there have been other studies and reviews on enteroviruses, but like you said, perhaps "CFS patients are more likely to have it, and it might be a trigger, but it isn't thought to be the cause of CFS". However, this description is pretty much how all supposed causes of CFS are viewed, including psychological "stress". Hence why the etiology of CFS is officialy "unknown", despite some biological clues to what causes or corresponds to some of the symptoms. I'm guessing that if severe psychological stress is important prior or during onset, it's because it compromises the immune response to infection.

_Tekaphor (TALK) 06:35, 29 December 2008 (UTC)

I've reworded the section a bit. See what you think. --sciencewatcher (talk) 15:01, 29 December 2008 (UTC)

87.115 and POV

Someone from the 87.115 range has now made several runs of POV edits, all of which have been reverted. There is a real possibility the article may need to be semiprotected unless this anonymous user can come to the talkpage to defend his/her edits. I think there is a particular concern that this is a reincarnation of banned user Guido den Broeder (talk · contribs), although the IP evidence points at the North of England. JFW | T@lk 15:10, 28 December 2008 (UTC)

Too late. Mr POV anon is invited to join the discussion. JFW | T@lk 15:25, 28 December 2008 (UTC)

Apologies to Stevenfruitsmaak for the edit conflict tangles. Needless to say, his version is the right one. JFW | T@lk 15:44, 28 December 2008 (UTC)

I'm not sure it's Guido. As I said above, it is plus.net, which is a UK ISP (I used to use them myself when I lived there). Unless plus.net are also in Holland or Belgium or wherever Guido lives, it is probably someone else. Would it be possible to just protect the article so that only registered users can edit it? That would be less restrictive than full protection, and it makes it a little more difficult for the spammers. --sciencewatcher (talk) 15:57, 28 December 2008 (UTC)

The current protection level is set to non-autoconfirmed users, so only new and unregistered users shouldn't be able to edit. We didn't full-protect. --Steven Fruitsmaak (Reply) 16:04, 28 December 2008 (UTC)

Ah, ok, I should have checked. Thanks. --sciencewatcher (talk) 16:16, 28 December 2008 (UTC)

Ongoing disputes

This article will always be subject to disputes as long as the proper range of biological information isn't included, the psychosocial aspect or cognitive behavioural approach are selectively oversold without caveats or qualifiers, and with double-standards in regards to sources. Addressing these issues should alleviate the feuding somewhat; some won't be satisfied until psychological factors are totally removed/excluded, but when considering WP guidelines/policies and research on CFS, this won't happen. There are psychological and social factors in many diseases, so I think this argument is a question of degree rather than "primary role" vs "absolutely no role", but beware of the (false) middle ground problem.

Guido was recently banned from Wikipedia; I view his so-called "disruptive edits" as mainly a response to the frustration at what happens at this article, attempting to balance things out. "87.x.x.x" made similar edits. It's inevitable and even warranted that a group of people who've been treated poorly for decades in the name of psychobabble will dislike/distrust anything resembling it and eventually rally against it, especially if CBT/GET failed them. And while these patients are often accused of "avoiding responsibility", you generally won't see any of the counter-accused "psychologizers" taking any responsibility for the poor treatment.

_Tekaphor (TALK) 06:29, 29 December 2008 (UTC)

I have to agree with much of what you're saying, Tekaphor. Looking at the article now vs. what it was a month ago or so, there have been a lot of very biased statements introduced which, to summarize rather broadly, seem to be of the general bent that "it's all in your head, if you just get out and exercise, you'll get better". Since you mentioned GET, let me take that as just one example: in the current version of the article, GET seems to be presented as a very positive treatment that works well in over half the cases. When you read the quoted articles, however, you see a lot of caveats and suggestions that more and better research is required. There's also little mention of how much improvement there was, only that there was some...one of the articles quoted mentions the word "signficantly". How much is that? What were the starting points for these people? Did those who were bed-ridden suddenly start working their old jobs again, or was it considered "significant" that they could now sit up on their own? That same article also refers to dropouts. Were the improvements perhaps "significant" because the dropouts (who presumably couldn't keep up with the exercise) were no longer being factored in?

But rather than mention these things, the section as it currently stands simply blames any disputes with these results on patient groups, making it sound very much like patients are simply refusing to do the things that will help. (Trust me, many of us have tried! And I'll be the first to admit "some" improvement with exercise, though as the disease has a tendency to improve at least somewhat over time...another factor not mentioned in any of the articles quoted...it's unclear how much the exercise has actually helped vs. the condition simply having improved of its own accord.)

There also seems to be a lot of weight placed on a very few authors' work (Prins stood out, as did a couple of other names to a lesser extent) in recent edits.

In short, there are definitely some physical factors in most patients and there may be psychological factors as well. In point of fact, since we don't really know what's going on, it could be a dozen different conditions with the same symptomology. The article as it stands now, however, doesn't even come close to a balanced, unbiased view that tries to present all the relevant information. I think what it really needs is for the mythical unbiased person (or the closest we can find to it) to really go over it with a find-toothed comb and then place the article under protection for a while to allow the recent edit-warring to die off...hopefully. --Rob (talk) 07:35, 29 December 2008 (UTC)

Clearly neither of you have actually looked at 87.*'s edits. If you did you would see obvious vandalism here and 11 other instances on this page alone, where he/she deleted other users' talk entries.

As to questions about what is in the article: it is all about the quality of the references. Hooper's work is not mentioned because he is not a WP:MEDRS, whereas Prins is. And if GET/CBT or anything else is not represented fairly in the article, then you should improve it. But you can't base anything on your own experience, you must use reliable references. --sciencewatcher (talk) 15:12, 29 December 2008 (UTC)

I wasn't commenting on any editor's changes specifically, but rather on the overall tone of the article compared to what it was historically and the array of information that's out there on reliable medical sites. As a Patroller on UESPWiki, even though the focus is obviously very different, I most certainly have an appreciation for what is and is not acceptable in an article. I would never base the content of an article on my own experiences, however based on those same experiences, I most certainly will refute any categorical claims that are made to sound like they apply to all when clearly they don't.

As for improving the article, while I don't like what's there currently, I have neither the time nor the wherewithal to go over it in the detail it requires. Prins may well be a reliable source, but he is only one of many and the plain and simple truth is that nobody knows with certainty what the etiology of the disease is. As such, his work should be given no more weight than any other published in medical journals and the like. I can certainly tell you that the guidelines we use here in Canada and the research done by several reputable doctors disagrees with the use of CBT and GET in all instances. See the blue section between pages 10-11 and the "Caution" section on page 12 of this PDF overview of Canadian position when it comes to ME/CFS. --Rob (talk) 23:57, 29 December 2008 (UTC)

That blue section doesn't make sense. The proponents of CBT don't ignore the reality of biological symptoms and signs, and they don't think that symptoms are imagined. Wessely himself has done a lot of research into the physiology of CFS. But this does in fact go to the heart of the problem - the anti-psychological crowd believe that psychosomatic=imaginary, which is not (and never has been) the case. But seeing as this is such a common perception, it might be worth mentioning in the article if it isn't there already, using appropriate refs. --sciencewatcher (talk) 00:46, 30 December 2008 (UTC)

Update: I've just rewritten the "cognitive behavioural model" section of the article here. Have a look at the ref in google books - it gives useful info on the CBT illness model. --sciencewatcher (talk) 01:08, 30 December 2008 (UTC)

While I agree that psychosomatic does not equal imaginary, the overwhelming evidence at this point is that CFS is not in any way psychosomatic, at least not for the majority of its sufferers. In fact, CFS is even quoted on the psychosomatic medicine page as being one example of a disease where the psychosomatic view of the disorder has been slow to disappear despite evidence to the contrary. This is the same sort of thinking that we've seen time and time again with conditions like MS, Lupus, Lyme Disease, and even ulcers! "We can't find a cause, so it must be psychosomatic. Certainly our science can't possibly be failing us, and to say that our knowledge might be deficient is just plain offensive." While CFS may not have a specific etiology at this point, it's definitely inappropriate for the article to take a pro-psychological view, which it very clearly does as it reads right now.

Personally, I'm neither pro-psychological nor anti-psychological - there are somatoform disorders out there that produce very real symptoms, and since there's no established way of confirming CFS, I'm quite certain that in some cases, a somatoform disorder is the real cause. As such, that should certainly be mentioned on the page. But somatoform disorders do not typically produce the level of measurable impairment that is often seen in CFS patients, they most certainly do not produce the reductions of grey matter that are attributed to ME, wide-ranging genetic alterations, and the various other observed changes reported in various studies. Also, perhaps of primary importance in any debate about psychosomatic illness is that in many patients, there's a complete and utter lack of any psychological cause - no stressors, no factitious disorders, nothing.

But in the end, most prominent physicians who've studied the illness believe it's entirely physical in nature. For the article to take the highly pro-psychological bent that it does now is entirely inappropriate. Frankly, I think we should undo the last 6 months or so of edits and leave it at that! If you go back and read the articles from then and compare them to how they read now, you'll see why many people object. Balanced it ain't! --Rob (talk) 01:37, 30 December 2008 (UTC)

(outdent) Re: your update - it looks pretty good, though I don't believe the original CBT paragraph was all that flawed. The simple reality is that a patient's perception of their illness will affect how they proceed, how they treat it, and in many cases, how quickly they recover. The new section as-written does seem to be a balanced presentation of the facts and why CBT and similar self-help treatments are used and often effective to some degree. --Rob (talk) 01:43, 30 December 2008 (UTC)

The psychosomatic article doesn't say that "psychosomatic view of the disorder has been slow to disappear despite evidence to the contrary". If you read it carefully you'll see it actually says that there is still a controversy for CFS and peptic ulcers. Peptic ulcers are a very good example of an illness that was thought to be purely psychosomatic, then purely physical, but now we know there is a large psychosomatic factor. Have a look at the peptic ulcer article. Anyway, you're right in saying that the CFS article shouldn't have a pro-psychological bent. It should discuss the evidence in a NPOV. If it doesn't do this (and I haven't read through the entire article recently, so I don't know) then it should be edited accordingly. But you are incorrect in saying that psychiatric disorders do not cause genetic alterations or changes in grey matter. Take stress, for example, which causes changes in brain structure and chemistry, and also causes changes in gene expression. And again this is also one of the major misconceptions that lead many people to believe that CFS can't be psychiatric. --sciencewatcher (talk) 02:05, 30 December 2008 (UTC)

Actually, re-reading it, I think the wording in the pscyosomatic medicine article is ambiguous and could be taken either way. And as for ulcers, did we ever actually think they were purely physical? I was at least vaguely aware of the various components and the fact that some were still entirely unexplained, but my wording was, admittedly, a little unclear. As for stress and gene expression, I was unaware of that and the wiki article makes no reference to it. Can you provide details? You've got me curious. --Rob (talk) 02:48, 30 December 2008 (UTC)

After I wrote the above I realised that the psychosomatic article probably needs some re-wording which I'll do soon. Regarding gene expression: the one that comes to mind is "Chronic psychosocial stress regulates the expression of both GR and MR mRNA in the hippocampal formation of tree shrews" (PMID 11769314). Gene expression isn't itself a sign of damage, and even one session of heavy exercise alters the expression of genes associated with stress and the immune system in the blood (PMID 15194674). I suspect the reason this isn't included in the article is because it's not really anything to do with CFS, although it is interesting and it's probably useful to understand it when considering the gene expression studies of CFS patients. --sciencewatcher (talk) 04:14, 30 December 2008 (UTC)

I would support the comments made above by 'Rob', 'Ward20', 'Tekaphor' and others in recent time that the Articles currently do not present a WP:NPOV balanced position, and there would seem to be consensus to this and the need to remedy. It may well be an artifact of the exalted position of WP:MEDRS and its bureacratic 'rules' ie. of favouring reviews over primary findings, together with the observation that one school of ME/CFS thought have been pro-active in producing "reviews' IMO one sided limited scope ones at that. This coupled with the apparent bias of some editors both in interpreting WP:MEDRS and in editing, could be producing the lop-sided changes of more recent time? The situation is becoming so obvious that something needs to be done, and I hope others will find time to edit. Jagra (talk) 04:21, 31 December 2008 (UTC)

People pls remember, this is not a medical encyclopedia for doctors and we are not here to talk about what mRNA goes up two percent in one study and down five point three in second study and debating the methods of those two studies and if its better the one used Taqman and other used SYBRgreen and which one is better blah blah. Also sorry Jagra we go on MEDRS at Wikipedia medical articles it is not right when people use anecdotes about one patient like Tekaphor did saying CBT worsens symptoms!! And pls read discussion, CBT succes does not mean CFS is purely psychological. Opinions are great on blogs, here please stay in MEDRS, prefer top journals. Thx, RetroS1mone talk 05:22, 31 December 2008 (UTC)

RetroS1mone, I admit I didn't even bother to check out the primary source before adding the review, perhaps I got sloppy after WLU's comment about the Lancet dispute, that the authority for the statement in a review comes from the publishers and not the cited sources used within. Sciencewatcher, as for "87.x.x.x", I wasn't aware of that, and talkpage content shouldn't really be deleted like it was; perhaps there's more than one editor under that IP range? Hi Jagra, welcome back! As you know, none of the editors you listed are "anti-psychological" or pushing for the removal of CBT or psychological factors, and just insist on the warranted balance and qualifiers for these sections that are usually enforced for all other aspects of the CFS article. Rob, while psychological states do affect physiology, this means little to understanding CFS itself unless it can be clearly demonstrated that both are CFS-specific. - Tekaphor (TALK) 13:08, 31 December 2008 (UTC)

I just had a quick look over the main cfs article, and it does appear to be pretty balanced. Psychological viewpoint doesn't appear to be pushed, and it seems to reflect the current state of research. I did however notice that ref 37 (Prins) is used 7 times in the text. I don't have access to the full text of this review, but it appears to be a reliable source. But I do understand if people think this represents a pro-psychological POV as the review is from a "Department of Medical Psychology". One example: why does Prins say the Canadian definition was developed "in an attempt to exclude psychiatric cases"? Also, in response to a previous query about why we don't use Spence: we do, his research is referenced in the pathophysiology sub-article, and there is info about genetics, oxidative stress, etc. --sciencewatcher (talk) 15:56, 31 December 2008 (UTC)

RS, I have no objection to WP:MEDRS but note from its own talk page that many issues are far from settled there. You seem to be defending the suggestion of an artifact having arisen! and i am sure MEDRS alone is not responsible for the bias of the Articles as they presently stand, and commented upon now by numerous editors. As you know CFS is not well funded in all areas of research and tends to favour certain sectors from time to time, such that any attempt to impose age limits on studies or texts is bias in itself. As to favoured journals, a mainstream journal is a mainstream journal, as you said yourself "this is not a medical encyclopedia for doctors and we are not here to talk about what mRNA goes up two percent in one study and down five point three in second study and debating the methods of those two studies and if its better the one used Taqman and other used SYBRgreen and which one is better blah blah."So I will scrutize interpretations closely, with this in mind. SW, we all have filters: emotional, professional, psychosocial etc. and one persons meat is anothers poison, (or bias) consensus of late is that the Articles are not NPOV 'balanced' for whatever reasons, despite your opinion otherwise.Jagra (talk) 23:33, 31 December 2008 (UTC)

Consensus of late?? Medical articles consensus are not from a vote of POV group of activisits that used to edit the article and did not for a long time and now are editing again suddenly Guido is gone, hmmm very strange?? Medical articles consensus is the consensus of the medical literature, medrs. RetroS1mone talk 03:21, 2 January 2009 (UTC)

Deletion of information taken from Knoop 2007

Retro You deleted some info in the CBT section about worsening of sx. During the same edit, you also deleted some entirely unrelated info about Knoop 2007, that I added yesterday.

"However, the study lacked a control group; the authors also reported that the percentage of recovered patients depended on the criteria used for recovery. Only 23% of the patients fully recovered, using the most comprehensive definition of recovery."

I inserted it because the existing description of the Knoop 'study' did not mention that this was an uncontrolled non-experimental study, unlike other 'studies' here which were in fact experimental 'trials' - RCTs in fact. A crucial distinction in the hierarchy of evidence used in EBM, as I'm sure you're aware. I also added the authors' own prominent acknowledgement (i.e. from their abstract) that only 23% recovered using more comprehensive criteria than CDC. Since I refuse to engage in retaliatory reversions, either please reinstate my edit, or explain how essential info taken from Knoop's own paper can be deleted as OR. Thanks, Sam Weller (talk) 16:22, 31 December 2008 (UTC)

I deleted worsening of symptoms BC it was an anecdote about one patinet in a obscure journal.

I object when you take a reference you do not like conclusions from and you say however and then try pick apart its methods. That study is in medrs reviews by experts it is one from a few studies that say 70%, it uses many patients it is not just anecdote like the one Tekaphor added for lower range of CBT. You can use 23% by more stringent criteria but we shouldnt have lots of sentences trying picking it apart, that is the OR. RetroS1mone talk 17:49, 31 December 2008 (UTC)

1. Who's objecting to Knoop's conclusions? I objected only the selective presentation of the 70% figure. The authors thought the 23% was so important that they highlighted it in their abstract. 2. Are you really unaware that an observational study is not as reliable as an RCT, due to all sorts of potential biases that RCTs control for? That's why systematic reviews like Cochrane include only RCTs when they are available. Since there are 2 RCTs showing 70%, outside Cochrane, why cite Knoop at all? I've previously said it would be better to delete it, and repeat that here. Or if you insist on keeping it, I will have to insist on a caveat: that uncontrolled studies are not equal in weight to RCTs. Sam Weller (talk) 18:23, 31 December 2008 (UTC)

It might be worth trimming some of the CBT section in the main article, as it doesn't make sense to have all the info again in the treatment sub-article. The main article should really just be a summary. --sciencewatcher (talk) 19:54, 31 December 2008 (UTC)

I have significant problems with the 23% figure. I grant it to Sam that the abstract mentions this, but for the average reader it is meaningless unless we can expand on what is meant by this. Not meeting the CDC criteria means that technically one doesn't have CFS anymore. Clearly there is a significant gap between "full-blown CFS" and complete recovery. But even if CBT isn't a cure for many, it still seems to improve symptoms. JFW | T@lk 20:42, 31 December 2008 (UTC)

It would be helpful if someone could post more info about this study. I only have access to the abstract, and it doesn't say what the "most comprehensive definition of recovery" actually is. It does seem strange that there is such a gap. Also, this study is mentioned in the treatment sub-article. Previously it only mentioned the 23% figure, but I just added the 69% figure as well. --sciencewatcher (talk) 20:54, 31 December 2008 (UTC)

RetroS1mone, despite the constant citing of "MEDRS", there seems to be some double-standards. For example, the current text "some studies report higher success rates (as high as 70%[54] and 73%[55]) than those reviewed by Cochrane" is arguably using primary sources to partly contradict Cochrane and isn't even correct because both of these studies were reviewed by Cochrane. I doubt that you would tolerate this if the situation was reversed (eg using PMID 8430715 from Cochrane to contradict it) or if it was done in other sections of the article. ... Sam, good points. ... Sciencewatcher, good luck with the trimming and subpage issue, I've mentioned it before. ... JFW, without accessing the full-text, I can't tell how much improvement there was; if "full-blown CFS" is an arbitrary cut-off point, it's possible that even a modest improvement could result in "no longer fulfilling CDC criteria" if they were close to the threshold before treatment, and I remember another CBT study being criticised for that exact same reason. - Tekaphor (TALK) 03:26, 1 January 2009 (UTC)

Well an anecdote about one patient is not medrs sorry Tekaphor we use medrs not your opinions and cherry picking from literature. RetroS1mone talk 04:39, 1 January 2009 (UTC)

Tekaphor's discussion of how primary sources are misused in regard to secondary sources is much more persuasive than the hand waving argument by RetroS1mone. Support Tekaphor on this. Ward20 (talk) 09:22, 1 January 2009 (UTC)

Since when is a readily verifiable point "hand waving"? JFW | T@lk 12:12, 1 January 2009 (UTC)

R1, as I explained yesterday, I didn't consciously add an "anecdote about one patient" and I already freely admitted that it was a sloppy mistake to not first check the citation used within the review before inserting it into the article, so why dwell solely on that in your response? Reversion of all my new today edits (and one of Ward20's) in one step as "POV edits" without an adequate explanation is concerning, and so is the general refusal to discuss your edits; aren't these the behaviours you accused Guido of doing? Reverting the "Onset" section edit was especially bizzare, considering that I simply replaced the tagged text with the conclusion of the authors, so how does the authors' own words "fail verification" of the source?

I've requested explanations for why two primary sources are selectively used and incorrectly worded, why all other primary sources that don't lean the same way are dismissed while a single non-RCT without follow-up is strongly defended as "MEDRS", why there is a resistance to follow WP:MEDRS's "mention uncertainty/controversy" and WP:NPOV's "present conflicting perspectives fairly", and similarly why the positive findings in systematic reviews (among other sources) are viewed as evidence while the caveats from the same sources are seemingly viewed as opinions and OR? I've tried to resolve the issue through discussion (WP:TALK), but was I being unreasonable to expect this? Then I tried to resolve the problem with edits, which were rejected; but were today's edits really so radical? JFW, perhaps a readily verifiable point becomes "hand waving" when it is used hypocritically? - Tekaphor (TALK) 12:28, 1 January 2009 (UTC)

Yes, JFW, there's a minor problem with Knoop's 23% as it stands even though 23% is close to the much more rigorous Cochrane figures. But we're waiting to hear your position on the bigger problem: an uncontrolled cohort study mentioned in the same breath as a Cochrane review of RCTs. BTW, I was wrong about it being observational - with no control group, it's even lower in the evidence hierarchy, so I'm adjusting the study description to match the Medline Mesh heading for Knoop. Good summary, Tek. Sam Weller (talk) 16:18, 1 January 2009 (UTC)

Discussion of edits [56] and [57]

With an inaccurate edit summary of (revert POV edits), the edit[58] reintroduced problems and inaccuracies discussed on the talk page and edit summaries that other edits attempted to fix. The edit should be reverted. Ward20 (talk) 05:47, 1 January 2009 (UTC)

I also believe this edit[59] is flawed. the Journal of Chronic Fatigue Syndrome although not PubMed indexed was peer reviewed. A virtual who's who of CFS researchers have published in it. the Journal of Chronic Fatigue Syndrome is referenced by CFS articles authored by Wessley, Cochrane Reviews, Prins, Chalder, and almost countless others. The cited article is a secondary source and the A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome authors are well published and respected CFS researchers, and many are already cited in this article:

Leonard A. Jason (Chairperson), David S. Bell, Kathy Rowe, Elke L. S. Van Hoof, Karen Jordan, Charles Lapp, Alan Gurwitt, Teruhisa Miike, Susan Torres-Harding, and Kenny De Meirleir are members of IACFS (International Association for Chronic Fatigue Syndrome). Leonard A. Jason is affiliated with the Center for Community Research, DePaul University, Chicago, IL, USA. David S. Bell is Clinical Associate Professor of Pediatrics, State University of New York at Buffalo, Buffalo, NY, USA. Kathy Rowe is affiliated with the Department of General Paediatrics, Royal Children's Hospital, Parkville, Victoria, Australia. Elke L.S. Van Hoof is affiliated with Cognitive and Biological Psychology, Faculty of Psychological and Educational Sciences, Vrije Universiteit Brussel, Belgium. “A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”, Journal of CFS (2006) 2 Karen Jordan is in Private Practice, Seattle, WA, USA. Charles Lapp is affiliated with Hunter-Hopkins Center, PA, Charlotte, NC, USA. Alan Gurwitt is affiliated with Boston Psychoanalytic Institute and Society, MA, USA. Teruhisa Miike is affiliated with the Department of Child Development, Faculty of Medical and Pharmaceutical Sciences, Kumamoto University Graduate School, Kumamoto,Japan. Susan Torres-Harding is affiliated with the Center for Community Research, DePaul University, Chicago, IL, USA. Kenny De Meirleir is affiliated with the Department of Human Physiology, Faculty of Physical Education and Physical Therapy, Vrije Universiteit Brussel, Belgium.

The cited article is incorporated in the book Pediatric Chronic Fatigue Syndrome By Kenny De Meirleir, Neil R. McGregor, Elke L. S. Van Hoof Published by Informa Health Care, 2007 ISBN 0789035316, ISBN 9780789035318 [60]

The citation is not used to contradict any other citations and only is used to source that adolescent prevalance studies vary in their results. It specifically talks about PMID 12412768, PMID 8387910, and PMID 15193572. That certainly should meet WP:MEDRS standards. Ward20 (talk) 09:04, 1 January 2009 (UTC)

The publisher's website is blocked by my virus scanner. A journal must be really obscure if it is not being indexed on PubMed. Sarcoidosis Vascultitis and Diffuse Lung Diseases is indexed, as is the Croatian Medical Journal. JFW | T@lk 11:54, 1 January 2009 (UTC)

Sorry i can't find now, JCFS was discussed at reliable source noticeboard i think, pls look it up Ward20, it is not medrs. Can we pls stay w medrs, not dig into peoples private club POV journals to find some thing we like? Thx, RetroS1mone talk 00:05, 2 January 2009 (UTC)

JCFS is a defunct journal. Nobody seems to know why it was dropped. I don't have any opinion/knowledge about whether it is or was a reliable source, but as Retro says it was discussed a while ago. --sciencewatcher (talk) 01:15, 2 January 2009 (UTC)

Yeah it is defunct, it did not get citied alot, it was very incestous, it is not Pubmed, it is not medrs. RetroS1mone talk 03:23, 2 January 2009 (UTC)

Is it perhaps not being indexed only because it is no longer published? DGG (talk) 16:35, 3 January 2009 (UTC)

DGG: no, because numerous defunct journals are indexed, such as the West J Med. It's the obscurity wot did it. JFW | T@lk 18:13, 3 January 2009 (UTC)

JCFS is not a reliable source to compare with the Lancet. See here. Again. At best it should be used with extreme caution, and shouldn't be used to support any significant, controversial assertions, but it would work for the opinions of a minority per WP:UNDUE in my opinion. How many times does this need to be repeated before a journal, that has been defunct for years, can be pretty much striken? WLU (t) (c) Wikipedia's rules:^simple/_complex 23:44, 3 January 2009 (UTC)

I agree the Journal of Chronic fatigue Syndrome is not in the same league as the Lancet, but don't forget the Journal of Chronic Fatigue Syndrome concentrates on that subject alone. As far as it meeting WP:MEDRS, I can't find where not being PubMed indexed dis-qualifies it from being a valid source under WP:MEDRS. It did have a peer review process. A PubMed search of ("chronic fatigue syndrome") lists 3770 publications. A PubMed search of ("Journal of Chronic Fatigue Syndrome") which would yield articles that cite the Journal of Chronic Fatigue Syndrome lists 3648 publications, which seems impressive (I could be wrong). If anyone can tell me how to search for any instance of Lancet and ("chronic fatigue syndrome") to see the approximate number of chronic fatigue syndrome articles that cite the Lancet, I would appreciate it. So far I have only been able to get the number of chronic fatigue syndrome articles published by the Lancet (99).

I found articles that were published by the Journal of Chronic fatigue Syndrome in 2006. This CFS article cites publications that are much older than that so I am not sure I see the significance of it being out of publication since 2006. The link to Haworth_Press on the Wikipedia:Reliable sources noticeboard only had one editor that expressed an opinion. I am not sure the inference there was only a small group of researchers that published on it, and it only had a small impact is correct. I am working on the specifics but with links it takes time. Ward20 (talk) 09:33, 4 January 2009 (UTC)

Suggestion Ward20 your time is spending better finding secondary sources in top journals to back up your views. RetroS1mone talk 21:27, 4 January 2009 (UTC)

The J of CFS was discussed on this page previously as RS, it was also the source for publishing the Canadian Guidelines, are they not good enough now? Retrosimone I suggest you become more civil and courteous in your responses, such as the one above you made to me. Medical articles consensus are not from a vote of POV group of activisits that used to edit the article and did not for a long time and now are editing again suddenly Guido is gone, hmmm very strange?? For instance it is about 4 months since I last edited here and since when and where on wiki is last edit a factor, let alone in consensus? Most of those commenting impartially on the current balance of this Article have a much longer history of contribution on this page than you. If anything you are the junior here, and behaving like a teenager! I dont think anyone is really interested in your suspicions and fantasied non-existant relationships. POV editor accusations are easy to make and redirect, how about you prove your statements, rather than sling off at others. Jagra (talk) 00:35, 5 January 2009 (UTC)

Folks, can we look beyond polemics. It is the CONTRIBUTORS to a journal that makes it reliable or not! Look at the authors of the articles -- if they include most of the known experts, then the question is moot. Really moot. There is currently no journal that specializes in this illness (please correct me). The key issue is the CONTRIBUTORS -- are they deemed to be experts in the field, if so, then is there any other journal that has that number of articles by the same contributors? Discarding this journal on the reasons that I see cited above is trying to do power plays with word games. Lassesen (talk) 04:55, 5 January 2009 (UTC)

The J of CFS was discussed and in consensus agreed to be a Reliable Source for this Article in the last year here apparently overturned lately by a minority POV group more recently. I agree its status should be returned. Jagra (talk) 01:09, 6 January 2009 (UTC)

That discussion happened before the journal went defunct as far as I can tell. And James Stewart seems to be saying that he only accepts it as reliable because one of the articles was funded by Health Canada. It's not exactly a ringing endorsement. --sciencewatcher (talk) 02:59, 6 January 2009 (UTC)

But it was a consensus, that established the bonafides for the edits made, and what has being defunct now got to do with RS then or now? it was previously also listed on Pubmed, so what ? Jagra (talk) 00:49, 8 January 2009 (UTC)

Jagra i made some changes to this article since last year with lots of other people, based from high string journals and WP guidelines, and it is OK you are upset. This article obviously very important to you and other activists, so I understand why you call me names. You disagree on the medical literature so you disagree on me, that is ok. I do care more when people say the POV of a medical article is up for a vote. I am sorry you do not understand why some edits by that group of people Guido called his respected editors and other people called a ME/CFS working group are problemic and why JCFS is not medrs, WP has to follow medical reliable sources, it is not my guideleine it is WP. RetroS1mone talk 05:19, 6 January 2009 (UTC)

Retro thanks for comments from your POV however for the record i need to correct some disinformation you have added to this page. firstly i am not an "Activist", belong to no activist groups or societies, please do not paint me as such again. Yes I do disagree with your limited medical perspectives as it means you are unable to be NPOV in your edits as examples on this page by others have clearly shown. You seem to be using Guido and his list of 'respected editors', as confirmation and evidence for some sort of cabal, and thus guilty by association! Unlike you it seems I can respect even those I would never associate with! These are nasty smear tactics and together with your mud-slinging noted elsewhere already are better suited to communist regimes, not here. WP: has other 'guidelines' too. For the record i am not 'upset' nor do i seek or need your condescension, but in all honesty the behaviour noted here will convince me to stay around longer than intended. Jagra (talk) 00:49, 8 January 2009 (UTC)

Ward20 and verifiability

Ward20 (talk · contribs) now insists that we directly prove (with a source) that "chronic fatigue syndrome" is the most common name for the disorder discussed in this article. I am being asked to PROVEIT in an edit summary.[61] So here we go:

• Googlefight CFS vs ME, ratio 20:1
• PubMed 3769 versus 229, again a ratio of 16:1

Even if we cannot directly demonstrate this with a source, the predominance of CFS as a name is easily verifiable. I suggest we leave it at that. JFW | T@lk 11:49, 1 January 2009 (UTC)

You should know there is a reason WP:V does not mention google or PubMed hits to establish claims, and that WP:PROVEIT says, "any material challenged or likely to be challenged must be attributed to a reliable, published source using an inline citation." I can do original research like you did and get different results. A google search for "chronic fatigue syndrome" over the last month gets 79,800 hits. [62] A google search for "cfids" over the last month gets 80,900 hits.[63]. According to that cfids is the most common name for the disorder. That is why we need to stick to WP:reliable sources for claims and not WP:original research. Please revert your removal [[64]] [65] of the tag. Ward20 (talk) 13:48, 1 January 2009 (UTC)

I've added the ref for this claim. I'm pretty sure it was there before, but maybe not. --sciencewatcher (talk) 15:45, 1 January 2009 (UTC)

Given that a source is now present, I shall not be reverting myself. Also, trends in naming come and go. I would not support a renaming to CFIDS purely because over the last month the latter term got 1100 more hits. Quite on the contrary, it is unsustainable as a name because immune dysfunction is not a consistent finding. JFW | T@lk 16:38, 1 January 2009 (UTC)

Ward20 alot of this was talked about many many times in last months since you edited with your group of ME friends Guido Tekaphor Jagra MESpringal and MEagenda, pls read it before you start this stuff again. Thx! RetroS1mone talk 00:03, 2 January 2009 (UTC)

RetroS1mone I was just asking for WP:policy to be followed. The relevant links are discussed above. Editing should follow policy. It was not being followed in this particular instance. RetroS1mone, I don't have a group of ME friends, and resent your statement that I do. Using someone's affiliations (whether true or not) as a means of dismissing or discrediting their views is a form of personal attack, so please do not repeat it.... Seriously. Ward20 (talk) 05:56, 2 January 2009 (UTC)

Guido said you and Tekaphor and others were part of a group that edited in co-ordinate. I am just listening to him and watching your stuff. You have a obvious POV. Your edits show it. The POV of WP is POV of MEDRS. Views do not get discredit, they are medrs or not. Yoursalot of times are not. Sorry RetroS1mone talk 04:00, 3 January 2009 (UTC)

RetroS1mone wrote that Guido den Broeder said I "and Tekaphor and others were part of a group that edited in co-ordinate." I am not aware of a statement by Guido den Broeder that I edit in coordination with anyone, and I have not done that. A link needs to be provided to where Guido den Broeder said I and Tekaphor and others "edited in co-ordinate" with any group. If a link is not shown where Guido den Broeder stated this, I would also consider it a lie and irresponsible baseless asserting of false information on a discussion page in order to mislead editors. STOP NOW with the other accusations on the talk page against me RetroS1mone! If you have specific material to discuss about WP articles I would be happy to discuss those. Ward20 (talk) 05:38, 3 January 2009 (UTC)

Like Ward20, I was not aware of any "group" that made co-ordinated edits. During 2008 I didn't make any article edits at all for about 7 months and my only contribution to the ME/CFS article split "project" was to suggest some names. Guido might have said that there are some editors which supported him on some issues and/or at least thought they were worth considering. - Tekaphor (TALK) 06:32, 3 January 2009 (UTC)

RetroS1mone, it would be useful if you could support your allegation with a diff. I'm not personally convinced there is a cabal here, but at the same time it would be useful if Ward20 informed himself of the previous discussions we've had on this subject. JFW | T@lk 18:09, 3 January 2009 (UTC)

JFW, I have been monitoring the article and talk page periodically. I realize there has been a lot of effort on the nomenclature. I tried to convey my belief the use of google hits, PubMed hits, or other surveys conducted by editors does not meet the threshold to verify a claim. My intent above was not to suggest we insert in the article that cfids is the most common name for the disorder. The example was only intended to illustrate that the the results of an editor using google hits should not be used to verify a claim. I am sorry if I did not make that point clearly. In any case Sciencewatcher found a verifiable source for the information. It would be nice if it came from a source that talked specifically about data concerning the name and wasn't 9 years old, but it is better than no source. Thank you for your cooperative discussion on the issue. Ward20 (talk) 22:32, 3 January 2009 (UTC)

Does anyone have a source saying that the condition this page is about is regularly called anything else? What else would we say here? If "easy to prove" is being used against CFS, it should equally be used against the alternative - what sources exist that say the page is about a condition other than CFS? What is the dispute about in this section? What sources are there that say "chronic fatigue syndrome is not the same thing as myalgic encephalomyelitis", or chronic fatigue immune dysfunction syndrome, or whatever other names are being bandied about? WLU (t) (c) Wikipedia's rules:^simple/_complex 23:50, 3 January 2009 (UTC)

I will try on finding the diff but i am remembering Guido said it many times how he and like minded editors and he was talking about people he said he respected on his user page and that was Ward20, Jagra, Tekaphor, had the page and subpages in a good condition and he accused me that i ruined all, when it was not me that made all edits alot of people have helped make these pages more like the medical literature in last half year. Guido had a name for the group it was ME/CFS interest group or something. I will try find the diffs some time i have time.

OK to Sam Weller did I say you were part in this group, i a msorry when i did i meant it is strange Guido gets community banned and suddenly Weller Tekaphor and two people that were not here for so long Ward20 and Jagra are suddenly here now Guido is gone. RetroS1mone talk 05:41, 4 January 2009 (UTC)

OK and Ward20 medmos says, name for condition is what medical community uses. A PubMed search is a good place on finding medical community usage not Google. PubMed is over-whelming CFS. It is just common sense to use CFS. Even the Journal of CFS that is not medrs and is alot of researchers with kinda fringe ideas has CFS in its title and it used it. Its like, i can't go on cancer and say hey people lets not call it cancer anymore i think it has bad connotation, i do not like it and patients do not like it, it should be called cytologial proliferative disorder CPD.

I have no problem with common sense but claims need verification. I asked for verification from a WP:RS and was supplied with one thanks to sciencewatcher. End of issue until someone comes up with a better WP:RS. Ward20 (talk) 00:05, 5 January 2009 (UTC)

I also think the mudslinging by Retrosimone is an underhanded form of personal attack and I resent accusations that I belonged to some sort of cabal of editors. I value my indepence as an editor and frankly have in the past refused to get involved in petty page politics and sanctions, as I am sure others editors could testify. I think apologies are in order unless evidence is forthcoming. As to names there certainly is sources for ME/CFS. Jagra (talk) 00:54, 5 January 2009 (UTC)

Yeah, I have to agree that there's a lot of mud-slinging going on here, and especially RetroS1mone seems to be intolerant of any evidence that doesn't match her own views being entered into the article, cited or not. It's for that reason that I've chosen to stop participating in this discussion...it's fruitless at this point. Having said that, if RetroS1mone continues her current behaviour, I'd suggest that someone report her and have her banned in much the same way as Guido apparently was. She doesn't see it, but her edits are as much POV as anybody else's, and it's unacceptable for a wiki article. With that, I will stop monitoring this page entirely for the time being...I have neither the time nor energy to engage in/defend myself from this kind of debating which I think is ultimately going nowhere. --Rob (talk) 21:07, 5 January 2009 (UTC)

I am still awaiting an apology before considering other options Jagra (talk) 01:21, 6 January 2009 (UTC)

I think Guido just had a list of people who edited in a way he liked. And sometimes when they did something to annoy him he removed them from his list. I don't think it was any sort of cabal. Maybe he's contacted some people recently, maybe not. Who knows? Who cares. Let's just get on with improving the article. Guido was useful for putting forward a patient POV, and now that he's gone we probably need others to fill his place. Tekaphor and Ward20 do a good job while sticking to the science and avoiding POV pushing (and I'm not implying that all other editors don't do this, just giving a couple of examples). --sciencewatcher (talk) 02:31, 6 January 2009 (UTC)

Thanks Sciencewatcher, interesting assessment. Like you said, we all should focus on improving the article rather than getting bogged down in speculation. Rob, I understand your position; some of RetroS1mone's edits seem disruptive, but banning is a little extreme, perhaps WP:RFC can be started for individual content issues? - Tekaphor (TALK) 09:11, 6 January 2009 (UTC)

I agree, banning would be extreme at this point. I'm trying to assume good faith at this point, but looking at some of her other edits and comments on her talk page, I can see that this isn't the only article where her edits have been controversial. That definitely gives me pause. That's why I said it should only be considered if her behaviour continues to be this disruptive. --Rob (talk) 10:07, 6 January 2009 (UTC)

Thank you that you did not ban me Rob but please retract the personal attack. My most conetroversial edit, i deleted a defamatory talk page comment, it was commented by Jimbo Wales, who said, "Clearly, RetroS1mone did the right thing" I have not history of blocks and bans, pls try understand, I am just trying follow a major WP guideline to keep this article in medical consensus. WP is not a sopbox for patient activists. It says what their views are it does not give them emphasis. RetroS1mone talk 13:06, 6 January 2009 (UTC)

I don't think RetroS1mone is in the same league as users such as Guido. She hasn't make any real personal attacks (I wouldn't put calling someone an "activist" in the same league as saying "in your complete and utter ignorance"). And she has reverted changes and agreed to consensus with others. It looks like she is a relatively new user (since May 2008), and hasn't quite learned that you can't force (what you believe to be) the truth on wikipedia. Anyway, I don't see her as being disruptive, and hopefully she'll learn from this and at least consider other POVs before making changes in future. --sciencewatcher (talk) 16:44, 6 January 2009 (UTC)

Labelling people as "activists" or whatever (regardless of the truth to the claim) wasn't really the main problem, but automatically dismissing the validity of their edits (based on speculation they are activists) is, and this was the source of my earlier frustration with RetroS1mone. - Tekaphor (TALK) 07:58, 7 January 2009 (UTC)

RetroS1mone: I see only opinions and suggestions in my post, not personal attacks. If you feel that something crossed the line, please quote the offending passage and in what way it contradicts WP guidelines, and I will retract that portion of my statement. Frankly, I'd rather you simply dropped it, I'm trying not to be involved in this discussion any more, and only monitoring the responses to my posts. --Rob (talk) 08:16, 7 January 2009 (UTC)

WTF?

The current article text states that those 2 RCT's weren't reviewed by Cochrane; this was the main rationale for their addition, but they were in Cochrane so just do a search! Therefore, they are incorrectly worded, and selectively used to contradict Cochrane despite being included in the review, hence why I removed them (especially when selectively using a CBT-negative study in the same way, like PMID 8430715, would be furiously opposed, hence the suspected double-standards about WP:RULES). If I can't even get such a simple verifiable point through after raising it several times and even using bold or underline, WTF is going on? Did the people opposing this even bother to check it out? So it's OK to lie in the article, eh?

I'll make it even easier for everyone and post the details. In the Cochrane 2008 CBT systematic review[66], if you look at the section "References to studies included in this review", you will see the following: "Deale 1996" matches PMID 9054791 (70% figure) and "Sharpe 1996" matches PMID 8555852 (73% figure). It doesn't get much clearer than that folks. As a side note, Cochrane says both these studies used Oxford criteria (although the sample in the "Deale 1996" matched both CDC and Oxford criteria). I previously explained the ridiculousness of the Dubbo study reversion. As for the "different trials use various outcomes" text in the CBT section, after deleting the above primary sources, this statement was orphaned so I added a caveat from the Chambers et al 2006 systematic review because they specifically mention this as a fundamental issue. Again, I'm drawing on WP:RULES to mention uncertainty/controversy and present differing perspectives fairly.

The research suggests CBT is partly effective in some people diagnosed with CFS; this line of research also comes with many questions and caveats; the systematic reviews on the subject each have several such examples which are glossed over here, and it's the way these are just dismissed as unimportant bias that is unacceptable, especially with the instances of apparent double-standards that I've given ample opportunities to be openly corrected on (RetroS1mone won't even discuss the issue and simply reverts all the changes as "POV edits"). In consideration of the smug contempt for anyone deemed to be a ME advocate or patient or associate regardless of the actual validity of their edits and comments (as Ward20 has also noticed), I have better things to do than waste hours trying to move an inch forward by negotiating with bigotry and the condescending or hypocritical parroting of WP:RULES. Obviously I'm wasting time/effort even pretending to expect reasonable debate and edits on these issues; like flogging an immortal but paralysed horse, there's some noise but no forward movement. - Tekaphor (TALK) 06:44, 2 January 2009 (UTC)

Tek, I understand your frustration with the bullying and foot-stamping that substitutes for evidence-based discussion here, but stick around. Deale & Sharpe are now removed again, since they were cited misleadingly, but no doubt in good faith.Sam Weller (talk) 10:59, 2 January 2009 (UTC)

This is not a good way to discuss by using nasty words in section start. A strong POV and being rude and nasty that is how Guido got banned. Why do not you reword not just delete stuff to help your anti science POV. RetroS1mone talk 04:02, 3 January 2009 (UTC)

So you now admit that Deale and Sharpe ARE in Cochrane? Are you aware why highlighting 2 RCTs at the top end of the Cochrane metaanalysis is anti-science? In case you're not, please explain why someone should not highlight those at the bottom end. Read what systematic reviews are, and what meta-analysis is. When you're done, you will understand why cherrypicking component RCTs - as you do - is anti-science. Sam Weller (talk) 10:42, 3 January 2009 (UTC)

RetroS1mone, as for rewording the 70%/73% statement instead of deleting; no, why would I support your double-standards? The positive findings and negative caveats go hand in hand; you can't stubbornly allow only the most positive aspects and then expect me to take you seriously when bashing people over the head with accusations of "cherry-picking" and "not following MEDRS", especially when you viewed a caveat from Chambers et al 2006 as POV despite the authors wording it as a "fundamental problem". You also refuse to allow any significant minority viewpoints whatsoever, which was just a short sentence from PACE. Your reversions appear more based on the alleged agenda of editors rather than WP:RULES. I doubt you could even accurately define what my opinion actually is, especially without pigeon-holing. Detailed discussion is more productive than merely typing acronyms like "MEDRS" and "POV". PS, I've "politely" responded to your message on my talkpage [67]. - Tekaphor (TALK) 01:40, 4 January 2009 (UTC)

It is not matter what your personal opinion is and what I think about it, just what MEDRS says. Cochrane says one percantage for one group of RCT, another percentage for another group of RCT. Tekaphor and Sam Weller and others always pick the Cochrane result with lower percentage. I gave both and i sad, the authors of some RCTs give higher percentage then what Cochrane said. I did not use the right words at end. The sentence was there a long time, no one said any thing, i was mistaked, now i am accused i do not know what a systematic review is. Lets be quieter and try work along each other RetroS1mone talk 05:49, 4 January 2009 (UTC)

Oh by the way the article Tekaphor gives Lloyd et al 1993 is totally medrs and it can go in there with the others, giving idea of range. It should be clear that most recent studies have higher results but it is wrong not including Lloyd when we have others, i am sorry if i was opposing it, was I?? Thx, RetroS1mone talk 07:49, 4 January 2009 (UTC)

[unindent]Retro: I don't have access to the full-text of Cochrane, but it looks like the only figure they give is the 40% one. If some of the studies had a 73%, perhaps some others had lower results, giving an average of 40%. In the review they pool the results so obviously some of the trials will have lower figures and some higher, and you can't just cherrypick the higher results without also giving the lower ones too, and that doesn't really make sense. It would be different if Cochrane gave a higher figure in their abstract saying that different criteria give different numbers, but they don't do that. --sciencewatcher (talk) 16:59, 4 January 2009 (UTC)

Also, the Knoop study, which I think was originally added by me, is useful because it does look at a different thing: full recovery. So even though it's not as authoratitive as Cochrane I think it's useful to include it (at least in the treatment sub-article), along with the caveats, etc. But I also think it would be useful to trim the CBT info in the main article as it should really just be a summary of the treatment sub-article which also gives the info. --sciencewatcher (talk) 16:59, 4 January 2009 (UTC)

Sciencewatcher Cochrane has lots of differnet sections about lots of different categories, the compare CBT with usual treatment in four and CBT with other psychological treatment in three, or is it other way around. To usual treatment is 40%, to psychological treatment is 48%. There is one study Lloyd 1993 that balances out the others, I think we should say about Lloyd and also give the more recent positive resutls. RetroS1mone talk 21:23, 4 January 2009 (UTC)

OK i have time to read Cochrane again. Sharpe is not used by Cochrane to come to 40% figure in four trials, CBT against usual, or 48% figure, three trials CBT against psychological treatments. Sharpe used in Cochrane as Sharpe 1993 is not just the Sharpe 1997 in our article it is four different studies. Sharpe 1993 is only used for data at follow up for CBT against usual not the 40% that is immediate post. So the 73% is separate from Cochrane report. Deale 1996 in Cochrane is Deale 1997 in here article and some others, it is may be one of the three studies used for immediate post in CBT versus psychological, so I take it out. So confusion solved?? RetroS1mone talk 02:13, 5 January 2009 (UTC)

The problem remains. In Cochrane p.26 the following are grouped together, and referred to collectively as "Sharpe 1993 {published and unpublished data}"

SharpeM.Non-pharmacological approaches to treatment. Chronic Fatigue Syndrome: Ciba Foundation Symposium. Vol. 173, 298-308, Chichester: John Wiley & Sons, 1993.

Sharpe M, Hawton K, Peto T. Cognitive behaviour therapy for the chronic fatigue syndrome. BMJ 1998;312:1098.

SharpeM, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I,PetoT,WarrellD, SeagroattS.Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled study. Verhaltenstherapie 1998;8(2):118–24.

SharpeM, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I, et al.Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. BritishMedical Journal 1996;312:22–6.

They are the same trial. Sharpe 1996 is the BMJ publication of Sharpe 1993.

This trial (Sharpe 1993 or 1996) was then pooled with 3 other trials:

"Analysis 1.9. Comparison 1 Cognitive behaviour therapy versus usual care, Outcome 9: Reduction in fatigue severity at follow-up (short/medium-term)." Graph on p.70.

Notice that the outcome measure (fatigue severity) is exactly the same as in the main analysis. Notice also that the earliest trial (Sharpe) is by far the most +ve. 2/3 of the trials published since 2000 failed to reach significance.

I make that 3 substantive errors in the text, compounding the shameless cherrypicking, so I'm removing it yet again (sigh). Interesting though how well it illustrates the common finding that early strong +ve results by enthusiasts tend to fail in independent replications. Sam Weller (talk) 21:13, 5 January 2009 (UTC)

Sharpe study was used for follow up part, not for the post treatment, the post treatment is the 40% or the 48%. RetroS1mone talk 03:19, 6 January 2009 (UTC)

I used the 40% figure because that's all the abstract gave; I didn't realise then that subscription wasn't needed for the full text. We've both made mistakes. I did indirectly imply on the 10th/Dec/2008 [68] that "Deale 1996" and "Sharpe 1996" were used in Cochrane, although I didn't highlight specifics. Sharpe 1993/1996 wasn't used for the 40% figure but was used for the same measure to calculate an average of 47% for short/medium-term follow-up and just happens to be the most optimistic trial out of the 4 listed on page 66 (so it's still being used selectively and the "aggregate" sentence is still incorrect). Lloyd 1993 wasn't used either so it's not "balancing out" the other studies as claimed (the wider 6 studies range was 1% to 54%). I used Lloyd 1993 as an example of what I doubted would be allowed, but I'll retract the accusation that it would be "furiously opposed" because RetroS1mone since said it would be allowed. However, selectively adding studies to the text to "balance out" the current selection wasn't really my intention and I've placed more emphasis on discussing the caveats in these systematic reviews.

Sharpe 1993/1996 [69] states that 73% (22/30) of CBT recipients achieved a "satisfactory outcome" (80 or more on the Karnofsky score (0-100) and/or improving by 10 points or more, with both groups starting at 72). It also gives 60% vs 23% for "much improved or very much improved" and 13% vs 10% reported deterioration. It uses the Oxford 1991 criteria that Sharpe co-authored, which even mentions that using different criteria makes "constructive comparison" of the research difficult. Wasn't RetroS1mone's argument for including Deale 1996 and Sharpe 1996 partly because "recent" CBT trials show higher results? 1996 isn't exactly "new" compared to 1993 since we are in 2009. It's been proposed that we mention a range of findings (eg no or minimal effect up to "73%" for Sharpe). However, they dont measure the same outcome, and this according to the authors Chambers et al 2006 is a "fundamental problem" but according to RetroS1mone's "POV" this is an activist opinion, and maintains that the "different studies use different outcome measures" statement should instead be followed with the most optimistic CBT study, as if different measurements explains why Cochrane didn't find averages of 70-73% rather than 40-48%? Suspected OR? I also remain unconvinced that important/relevant caveats are "undue" and I wouldn't want "biological" research added without such caveats either. - Tekaphor (TALK) 09:02, 6 January 2009 (UTC)

OK you convinced me Tekaphor, I reverted myself and it is gone, I agree on the problem with different measurements that is bad writing. Sam Weller is still mistaked, Sharpe is not one of four pooled for the 40% but it does not matter now it is gone. RetroS1mone talk 13:21, 6 January 2009 (UTC)

At last. And FTR, I said Sharpe was pooled with the follow-up trials (analysis 1.9, p.70) - not in the post-treatment group.Sam Weller (talk) 18:49, 6 January 2009 (UTC)

Edits by User:Lassesen

I think this was a poorly masked attempt at WP:OR WP:POV-pushing about antiphospholipid syndrome and related speculations, so have reverted. Comments welcome of course. --Steven Fruitsmaak (Reply) 21:05, 4 January 2009 (UTC)

Steve, your actions suggests that you appear to be advocating your own WP:POV. There is a large number of articles on the use of antibiotics and antiviral as treatment for CFIDS. Pubmed search

1. chronic fatigue syndrome antibiotic --> 53 hits
2. chronic fatigue syndrome antibiotic --> 65 hits

and there is not a single reference on this page. My references were removed because they are "unreliable".

I believe that many other people would agree that is prima facie bias spin on your editing. Many in the CFIDS research community have been very upset on the recent editing of this article -- your edits seem to reflect the approaches being advocated in the Netherlands which is where you are a medical student. These perspectives are not shared by the rest of the world.

Lassesen (talk) 21:26, 4 January 2009 (UTC)

Those numbers are peanuts, and it's not quantity that counts, it's quality. You were trying to argue that CFS is due to antiphospholipid syndrome based on 1 single article and a whole lotta smoke. I'm a medical student in Belgium, a country next to the Netherlands (although we do speak Dutch, which is the same as Flemish).

Find me one good randomized controlled trial about antibiotics in CFS, or one good article about antiphospholipid syndrome, and there will be no problem adding it. --Steven Fruitsmaak (Reply) 21:43, 4 January 2009 (UTC)

"Wikipedia articles should cover all significant views, doing so in proportion to their published prominence among the most reliable sources. The choice of appropriate sources depends on context and information should be clearly attributed where there are conflicting sources." WP:Reliable source That is what I did, and now you appear to be trying to create your own guidance to suite your WP:POV To most folks, PUBMED is the most reliable source, thus the CBT content should be less than the antibiotic, i.e. currently ZERO. I will give you some time to digest this, but an appropriate edit would be to remove all CBT references from the article. Lassesen (talk) 01:31, 5 January 2009 (UTC)

Hi Lassesen, an important guideline for Wikipedia medical articles is WP:MEDRS. Read this and you will have better understanding on Steven Fruitsmaak's edits. Medical articles should be most based from secondary sources in high quality journals like Lancet Nature Science BMJ, it idoes not mean you can not have a primary source when it is a very improtant one but mostly primary results in small journals are not good for a general medical article like here. And the Journal of Chronic Fatigue Syndrome is not a reliable source for a medical article.

Also, please do not make attacks on editors by disclosing bio details about them, thx. RetroS1mone talk 21:49, 4 January 2009 (UTC)

On what objective basis is “And the Journal of Chronic Fatigue Syndrome is not a reliable source for a medical article. “. If we assume that this is true, then any author that opts to publish there should also be deemed unreliable? Well, many of the existing citations in this article are included in that set of authors. Be consistent please! Lassesen (talk) 22:00, 4 January 2009 (UTC)

The discussion on the Journal of Chronic Fatigue Syndrome is here. [70] Ward20 (talk) 22:40, 4 January 2009 (UTC)

And past consensus as RS here Jagra (talk) 01:26, 6 January 2009 (UTC)

Ken: no serious researcher believes that antibiotics cure CFS. As Retro says, you need to look at the reliability and quality of the research. It's also a bit rude coming in here, putting in a whole raft load of POV edits ("CBT is a non-remission management") and edits where the references don't in any way support your text ("comobidity of these psychological symptoms with those seen with brain trauma") and then accusing others of POV. --sciencewatcher (talk) 00:13, 5 January 2009 (UTC)

That's a polemic response and definitely WP:POV. The FIRST question we need to address what are reliable sources. At that point we are in major disagreement. I'm about to start a topic here to address that foundational question. Once that is resolved, then we can ask if there are reliable sources that deems antibiotic and antvirals to be part of an effective treatment protocol. CBT is not a therapy but a coping strategy -- this article should be consistent in making that clear.

The question remains what (and who) determines what a reliable source is. See my new post when it appears. Lassesen (talk) 00:29, 5 January 2009 (UTC)

Recruiting

I am concerned by statement from Lassesen above, "Many in the CFIDS research community have been very upset on the recent editing of this article." Since Guido was community banned there are alot of people editing this article suddenly who did not edit before or they are editing after long absence. Is there recruiting to make a false consensus against medical sources, is my question. WP is not for campaigning for a cause like a name change for CFS. RetroS1mone talk 21:52, 4 January 2009 (UTC)

IMHO there is likely multiple WP:POV recruiting. Psychologists and people offering CBT profit from their offering being deemed to be the best treatment option. Many MD's prosper from being able to refer on to others patients that are beyond their medical knowledge and expertise (the classic MD ego issue).

Take the case of CFIDS coagulopathy, most family practise MD's do not wish to prescribe Heparin. They will refer to a hematologist. Hermatologists are rarely accustomed to dealing with chronic non-acute coagulopathy.

There is a signficant divide between main-stream medical sources consensus ("we don't want to deal with CFIDS patients because there are no pro-forma treatments") and the smaller CFIDS centric medical sources (for example, those that are publishing in the Journal of Chronic Fatigue Syndrome.

The surpression of even mentioning antibiotics and antivirals in the article speaks much about the dominate editors. For example, all of the SPECT studies showing hypoperfusion in CFIDS brains were deleted -- Why? Because it shows there is a real physical basis for the illness? Can you find any large study finding that there hypoperfusion is not common in CFIDS?

Lassesen (talk) 01:03, 5 January 2009 (UTC)

I doubt if it's anything as conspiratorial as "recruiting". My own reaction (but not editing) to the article, for instance, was based on the research I've been doing over the last several years since I got CFS and the knowledge I've acquired from reputable sources over those years. When I read the Wiki article, it didn't even remotely jive with the bulk of the information that I've seen and heard from those sources. The psychological aspect is one put forward by a minority of psychologists and very few others who've done any significant research in the field. That is not, however, how the article read when I looked at it again in late December. It had a very clear pro-psychological bent, and seemed to be recommending GET and CBT as "the best" (whatever that is) forms of treatment, where these have been clearly rejected by some researchers, and presented in a somewhat modified format by others (e.g., self-paced exercise that stays well under limits, and CBT used only as a mechanism to cope with long-term illness). I don't have the time or interest in editing an article that's this badly edit-warred, so I've chosen not to contribute beyond the occasional minor correction, and at this point, am giving up on Wikipedia as anything resembling a reliable source of information on this subject. --Rob (talk) 22:12, 5 January 2009 (UTC)

I wouldn't say that it is just "a minority" of researchers who have a pro-psychological bent. If you look at reliable sources, I would say it is close to 50/50, although it's hard to tell. There are a lot of well meaning researchers who are trying to prove that CFS is NOT psychological because they believe that a psychological etiology is somehow bad for patients. But from my own experience with people who have actually recovered from CFS, psychological factors have been the most important to recovery. I've been doing my own research into the illness for about 8 years now. Anyway this is all irrelevant for the article so I'll stop here. But if anyone is interested in discussing this further, feel free to email me. I'll also be putting some info about my POV/thoughts about CFS on my talk page soon. --sciencewatcher (talk) 23:50, 5 January 2009 (UTC)

Well if 50% of psychologist researchers have a pro- psych bent and 100% of others do not then 75% of researchers may not. Do you seriously think the Articles currently reflect that state? Like the psych researchers many of their studies are based on tertiary referal patients and are not a proper cross section of CFS or select to Oxford criteria that allows psych conditions. Not that I am against such research, only that it behoves Wiki to accurately define the population base of studies cited, so as not to confuse the reader, to beleive that somehow it is all the same. I do not know which population your observations are based upon, perhaps you could expand a bit? Jagra (talk) 01:43, 6 January 2009 (UTC)

No, I didn't say 50% of psychologists. I meant 50% of all researchers. But as I said, that's just a wild guess anyway. The article seems pretty much balanced. The only thing I would suggest is to trim the CBT section because it's already discussed in the treatment sub-article. My observations are based upon severe CFS as defined by both CDC and Canadian criteria (i.e. the patients would be diagnosed as having CFS under both), and having multi-system abnormalities in the immune system, neurological, physiological, heart problems, POTS, chronic pain, etc. Your POV appears to be that anyone who is cured of CFS using a psychological therapy didn't have "real" neurological CFS. This is a very common view among CFS campaigners, but it is completely wrong based on my experience. Anyway, back to the article now...if there is any research showing that different criteria give different results in CBT trials (or anything else) then it should go in the article. There is already a study which gives different figures for recovery using CBT depending on the definition for "recovery" used, but I'm not aware of any that actually compare the criteria used to diagnose the patients against the effectiveness of treatment. --sciencewatcher (talk) 02:19, 6 January 2009 (UTC)

It's not my impression of 50/50 at all, though in the UK where there seems to be a much larger group of psychological advocates, I'll admit it's probably closer to that. But the argument that because psychological factors have been the most important that the disease is therefore psychological is incorrect. People who are devoutly religious have also been found to have greater recovery rates from various illnesses in some studies. That doesn't mean that we should all go out and "find God". There again, it simply points to the fact that people who have a positive outlook and believe they'll get better are more likely to. (Though that brings up the argument of whether it's a real improvement or a delusion, but that's a whole 'nother ball of wax. Or you could argue that whatever god(s) they believe in are lending a hand...but that's going really far afield at this point. <g>)

Also, perhaps it's your 8 years of research that's the reason behind your views being more pro-psychological than mine. Back when you first started your research, that would've been a more predominant view. My research started just over two years ago, I think...about a year after symptoms first started that nobody could explain. By then, the psychological view was in decline, particularly amongst Canadian doctors, and being debated much more heavily by UK doctors. The US still believed that it was psychological by that point, though I'm seeing a substantial shift there in recent literature as well. My impression is that most European doctors have always considered it physical, but I'm content to be disproven on that...I didn't exactly do a study on each country's doctors' viewpoints. :D --Rob (talk) 10:26, 6 January 2009 (UTC)

I've replied on my talk page. --sciencewatcher (talk) 16:55, 6 January 2009 (UTC)

There you go again sciencewatcher used the word "cured" in relation to CFS, anyone who is cured of CFS using a psychological therapy you have been asked before for RS sources for the use of that word, or have i missed something of late? Jagra (talk) 01:37, 7 January 2009 (UTC)

Type "define:cure" into google and you'll see the definition of the word. My favourite is: cure - bring around: provide a cure for, make healthy again; "The treatment cured the boy's acne"; "The quack pretended to heal patients but never managed to. --sciencewatcher (talk) 04:41, 7 January 2009 (UTC)

My dictionary says of Recovery “a return to a previous state” whilst a Cure “is a return to health”. Further the connotation commonly associated with a cure is one of permanent change. For instance one can recover from a heart attack or stroke, but would not be considered by the average person (or reader) to be cured. CFS can be either sudden or gradual, which types were included in the treatment group? For a return to a previouis state for some does not necessarily mean to “full health”. So were the patients ‘post-viral’ or have comorbid or pre-existing psychiatric conditions? For instance if a patient lost one criteria symptom they would no longer meet the ‘CDC’ criteria for CFS (which criteria?) and would be classified, despite having many symptoms still as ‘recovered’ hardly cured, by any definition! Jagra (talk) 01:56, 8 January 2009 (UTC)

The patients were returned to perfect health with no relapses, which I think would be classed as "cured". We could discuss this further and I could answer your other points, but I think I would just be wasting my time. --sciencewatcher (talk) 02:35, 8 January 2009 (UTC)

Sw what follow up studies were done and at intervals? Answering your earlier query on recruitment; Comorbid presentation with psychiatric illnesses has been noted. Due to these fundamental issues, the impact of patient selection and the specification of the methods of outcome assessment loom large in therapeutic studies of CFS. The role of clinical methodology in the study of the therapeutics of CFS is not trivial, and may confound our understanding of pragmatic recommendations for treatment. PMID 16610962 Demitrack

Exclusions include a clear underlying organic cause, substance misuse, and psychiatric disorders such as psychotic depression. Less severe psychiatric disorders without Diagnostic and Statistical Manual (DSM)-IV-defined melancholic features or anxiety disorders or secondary depression are not exclusionary diagnoses and are found comorbid with CFS in some patients. Because high circulating cortisol is a frequent occurrence in major depression (7 ), this may clearly affect the results of these (HPA) studies. It is therefore vital to assess accurately the psychiatric status of CFS patients who participate in studies. (or treatments) Thus, although the subjects studied by Wood et al. (41 ) were said to have had a diagnosis of major depression excluded by clinicians, 5 of 10 subjects had Beck Depression Inventory scores within the mild-to-moderate depression range. This could have accounted for a failure to find reduced salivary cortisol levels. The same reservations apply to the study by Altemus et al. (33 ), whose negative findings were in apparently non-depressed CFS subjects who in fact had Hamilton Depression Rating scale scores consistent with mild depression. Similarly, the finding by Demitrack et al. (17 ) of impaired ACTH responses to CRH testing is also found in depression, and many of their subjects had comorbid psychiatric disorder. PMID 12700181 Cleare.

Most studies of Chronic Fatigue Syndrome (CFS) have been based on patients recruited from primary or tertiary care settings. Patients from such settings might not be typical of patients in the general population. PMID 12627607 So experts say it is important to clearly define the psych status of patients particually in treatment studies and WP should also define the recruitment and criteria used particually when citing treatment studies.Jagra (talk) 03:03, 8 January 2009 (UTC)

Ok, I am trying to catch up on conversations here, but from what I have read so far on this talk page is everyone needs to take a deep breath and calm down a bit. May I suggest this? Take one new ref and post it here under a new title then discuss the use of it both pro and con. Use the projects policies and decide if it is a reliable source. My undersatnding is that advocacy groups do not qualify for this type of article. I see a lot of editors posting now are patients, I try myself not to edit the Crohn's disease article too heavily because I have the disease so I have too strong of an opinion to edit there in my opinion. I am seeing too much emotion from some here too for the same reasons. It's hard to write an article about a disease you suffer from, esp. if you are part of an online group advocating for certain things. From what I have been able to tell so far is the CFS is the better known name, at least here in the US and according to the refs that were in the article prior to all these new editors that are here from when I was here. I don't think that RetoSImone is pushing anything here. She is trying real hard to follow policies here and I think it's unfair to judge her for that, let's try to assume good faith more. I just mention her because of the discussion for an RFC or calls to have her banned above. But I would like if someone would answer the question she put above and the title of this thread, is there offline recruiting going on? I think this is an important question that needs to be answered. I don't know much about this disease other than a few refs I have read and reading the article awhile back. I am sure by now things at the article has changed so it will take me time to get up to speed. I am not medical in anyway so some of the discusions going on are over my head and I will not respond to them unless there is a link that I can go to and read and understand. Like a few of you here have stated, my medical conditions also puts severe limitations on me, so I have to take my time. Thanks for listening,--CrohnieGal^Talk 16:37, 6 January 2009 (UTC)

Thanks for the comments Crohnie Gal If you wish to compare recent changes on a broad scale I suggest you compare the Article(s) from say last Aug to the current ones and I would be interested to hear your views, You are correct there has been a shortage of assume good faith by a certain editor, who has been asked a number of times to present evidence for her assertations, but is silent?, that is the more important question. Jagra (talk) 01:37, 7 January 2009 (UTC)

People often think they're NPOV-defenders, but can we stick to the validity of individual edits rather than stereotyping editors as activists or part of some cabal? I'm not aware of "recruiting" either, and sharing one or two comments on our talkpages over a period of nearly 2 years is hardly evidence of some unified front as implied by RetroS1mone. On the so-called "ME/CFS project", my main concern was having the article split at all, because this had been warranted for a long time; I merely provided some name suggestions and perhaps the occasional comment, but didn't participate in related edits as claimed. Occasionally using the term ME/CFS or CFS/ME out of respect for the history and controversy doesn't make me extremist, and neither does exploring the points made by "advocates/activists". Perhaps people started editing more after Guido got banned because of the holiday season? - Tekaphor (TALK) 08:25, 7 January 2009 (UTC)

Thanks for the responses. Question for Jagra, do you Aug '08 to present, or earlier? I also agree, lets try not to use names for editors like POV or anything else since it always derails discussions so lets just speak of the edits right now and not the editors. Another question, sorry if I am being dense, what question have you asked but not gotten an answer to? I see a lot of questions asked and attempts at answering. As for using the term CFS, CFS/ME and so forth, that was discussed at length not long ago and it was decided by the majority of editors and if I remember correctly some outside editors to go with CFS so as not to confuse the reader. Then the other terms were to be described in the article so the reader understood that there are multiple names for this syndrome. I think the hardest part for me with this article is the lack of knowing this disease. For example, Crohn's is a known disease, there is no doubt in the scientific community about it being a real disease and no doubt about it's name. But problems on that article comes from the disease having no known cure. There is evidence of genes, bacteria and so forth but some of it is under dispute, like the bacteria aspect, IE: MAP. MAP has been shown to help some with Crohn's achieve remission but for others it does nothing. I see this kind of conflict with a lot of areas of this disease. So we have to take the conflicted areas one at a time, present the refs, discuss the pros and cons and then try for a consensus for it. It is slow and hard to do but this is the only thing I can think of to make it the easist way to add new material about areas of conflict. And for the record, I am on who does NOT believe this is in your head type of illness. I got that diagnosis myself for two years so I want others here to understand that I do not ever say it is in your head. I will keep reading. Please continue to supply links and info to help me out if you feel like it. It does help me a lot to be lead sort of to what I am looking for. Oh another quick question, someone above questions the use of the word 'cure' above. Do you believe that there is 'no cure' or that 'some can be cured but others cannot because of extended damage and length of time, or that there is 'no cure at all'? For me this would help out alot since I think a lot in terms of 'no cure at all'. Thanks again, --CrohnieGal^Talk 12:27, 7 January 2009 (UTC)

Chronie, interesting that you agree Article now not balanced. The request was from JFW the moderator RetroS1mone, it would be useful if you could support your allegation with a diff. I'm not personally convinced there is a cabal here, ---. JFW | T@lk 18:09, 3 January 2009 (UTC)Jagra (talk) 01:56, 8 January 2009 (UTC)

There has been recruiting by editor Lassesen on his message board. I am saying it bc Lassesen already says he is internet activist on his talk [71], he is moderator from major message board about CFS. The message board has alot of patients on it, it has sections of free advertisement for Rife machines and electrocures and all kinds of other unproof and dangering cures. Unfortunately it is private board you have to join to see it but my friend is on it, and he sent me some of the stuff from there. There was a thing about Wikipedia where Lassesen said about how bad this article is and they make sarcastic comment about Wikipedia, but the original message is not there any more just the reply and part from original,

What is the point of trying to find viral or environmental ortoxicologic causes or cures for peoplewith the "impossible" to treat "chronic fatigue syndrome"? Its soooo expensive to keep testing and treating for this virus or that. If someone has (nudge nudge, wink wink) "CFS", just give up! "Just give em whiskey!" On Sun, Jan 4, 2009 at 4:35 PM, Ken wrote: "The CFS page does not have a single reference to antiviral or antibiotics." RetroS1mone talk 04:21, 8 January 2009 (UTC)

Published Works - Antiviral Treatment of CFS

Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993; 104:1417-1421. This first of our CFS publications outlines the essential cardiac involvement of CFS. We showed that 24 CFS consecutive patients had abnormal cardiac electrical conduction by 24-hr. ECG testing (Holter monitoring) compared to 106 non-fatigued control patients (p<0.03). In 8 of the 24 patients, gross abnormal cardiac wall motion at exercise MUGA testing was seen. Coronary artery disease was excluded by myocardial perfusion imaging in all CFS patients.

2 Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677. Continuing the CFS cardiac focus, 11 CFS patients were studied using the cardiac nuclear medicine MUGA test which measures muscle strength of the heart. Abnormal cardiac wall motion at rest and stress, dilation of the left ventricle and segmental wall motion abnormalities were observed. The cardiac abnormal dynamics worsen as CFS continues.

3 Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, MI 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-33. This is a controlled study of CFS cardiac involvement. The prevalence of abnormal Holter monitoring in 67 CFS patients and 78 non-CFS patients matched for age, place and time and absence of other confounding medical diseases were compared. Holter monitors in both CFS and control groups were read by two non-involved cardiologists without clinical knowledge about the patient or place in the study. Dr. Lerner was not a reader of Holter monitors in this study. The prevalence of T-wave abnormalities by Holter monitoring was greater in CFS than in non-CFS patients (p<0.01). The presence of abnormal T-waves at Holter monitoring was “sensitive indicator of the presence of CFS.” The “absence” of these abnormal T-waves made the diagnosis of CFS unlikely (statistical sensitivity 0.96). Light and electron micrographic studies of right ventricular endomyocardial biopsies in these CFS patients showed cardiomyopathic changes. We do not recommend further right ventricular cardiac biopsies in CFS patients since the hearts of CFS patients may be friable and may have an increased likelihood of post-biopsy bleeding.

Summary of Publications 1-3 (Cardiac Involvement in CFS) This original work shows that rapid heart rates at rest, and in some cases, abnormal cardiac wall motion contribute to the light-headedness that many CFS patients experience. Uniformly, abnormal Holter monitoring is present in CFS patients. This additional criterion for diagnosis of CFS illness, namely abnormal Holter monitoring, to the CDC criteria for the diagnosis of CFS does not exclude any CFS patients included in the original CDC definition. The absence of abnormal Holter ECG testing indicates that these fatigued patients do not have CFS.

4 Lerner AM, Zervos M, Dworkin HJ, Chang, CH and O’Neill W. A unified theory of the cause of chronic fatigue syndrome. Infectious Diseases in Clinical Practice 1997;6:230-243. We originally hypothesize that CFS is a prolonged infectious mononucleosis syndrome in previously healthy (immunocompetent) persons. We further speculate in this early study that prime candidates for the cause of CFS are two herpesviruses which cause infectious mononucleosis: Epstein-Barr virus (EBV) and cytomegalovirus (HCMV). We further suggest that studies seeking a single virus cause of CFS, even those studies searching for single virus EBV or single virus HCMV would conclude in a result of “no cause.” Indeed, such negative studies have been done. We suggest that (1997) there may be three causes of CFS: 1) single virus EBV CFS; 2) single virus HCMV CFS; and 3) EBV-HCMV co-infection CFS. This hypothesis (1997) we now know is correct.

5 Lerner AM. Editorial response: microbial persistence and idiopathic dilated cardiomyopathy. Clinical Infectious Diseases. 1999;29:526-7. Dr. Lerner discusses the possible relationship between long-standing cardiomyopathy, heart muscle disease not associated with coronary artery disease, and CFS. CFS is a cardiomyopathy of varying severity.

6 Lerner AM, Zervos M and Dworkin HJ et al. New cardiomyopathy: A pilot study of intravenous ganciclovir in a subset of the chronic fatigue syndrome. Infectious Diseases In Clinical Practice 1997;6:110-117. CFS patients in this study had significant IgG serum antibody titers to cytomegalovirus, but little to no evidence of EBV infection. In this study 13 of 18 CFS patients were remarkably improved after 30 days of intravenous ganciclovir (p<0.05). Single virus HCMV CFS in this pilot study was improved by antiviral treatment. There were no side effects from this carefully monitored trial. Results are similar using oral valganciclovir (valcyte).

7 Lerner AM, Beqaj SH and Deeter RG et al. A six-month trial of valacyclovir in the Epstein-Barr virus subset of chronic fatigue syndrome: improvement in left ventrical function. Drugs of Today. 2002; 38:549-561. Twenty-five patients with CFS illness were treated for 6 months with pharmacokinetic doses of valacyclovir (valtrex) in a formulation to give continuous anti-EBVeffective blood levels throughout the day. This is the first time such valacyclovir dosing was given. The trial was approved by the U.S. FDA. Patients were carefully monitored for safety by repeated appropriate blood tests. There were no adverse side effects. Sixteen patients with single virus EBV infection were benefited, but 9 clinically similar CFS patients with EBV-HCMB co-infection were not benefited. Valacyclovir (valtrex) in the laboratory is effective versus EBV, but it is NOT effective (active) versus HCMV. Therefore, the results strengthen the need for subset classification and appropriate subse-directed antiviral treatment for CFS illness. This, to our knowledge, is the first successful report of valacyclovir treatment for EBV infection. These results have now been repeated with similar benefit to CFS patients.

8 Lerner AM, Zervos M and Chang CH et al. A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome. Cllincal Infectious Diseases. 2001; 32:1657-58. Eleven CFS patients with EBV-HCMV co-infections were treated according to their subset classification over an 18-month period with antiviral drug treatments. All patients were monitored for safety every 4-6 weeks. Valacyclovir for EBV infection and introvenous ganciclovir for HCMV infection were used. There were no significant side effects in CFS patients. All 11 CFS patients in this study significantly improved.

9 Lerner AM, Beqaj SH, Deeter RG and Fitzgerald JT. IgM serum antibodies to human cytomegalovirus nonstructural gene products p52 and CM2 (UL44 and UL57) are uniquely present in a subset of patients with chronic fatigue syndrome. In Vivo. 2002;16:153-160. This is an enlightening study. In many CFS patients in whom our work implies an EBV or HCMV single infection or EBV-HCMV co-infection cause for CFS illness, normal means for diagnosis by blood tests or virus isolation (including those using polymerase chain reactions) are negative. In this study, we show a definitive new means of HCMV multiplication in HCMV subset of CFS patients. The p52 and CM2 HCMV IgM antibodies were present in 16 CFS patients, and were not present in 77 control patients. These data provide strong evidence for a virus etiology for CFS illness and provide strong evidence for antiviral treatment of CFS patients.

10 Lerner AM, Deeter RG, O’Neill W, Dworkin HJ, Zervos M, Beqaj, SH, Chang CH, and Fitzgerald JT. “Cardiac and virologic issues” pp 304-330 from Handbook of Chronic Fatigue Syndrome. Jason LA, Fennell PA, and Raylor RR. John Wiley & Sons, Inc. We describe studies spanning over a decade which support the paradigm that CFS is a prolonged infectious mononucleosis due to Epstein-Barr virus, cytomegalovirus or the two viruses in co-infection. This paradigm suggests that CFS patients’own immune defenses prevent complete virus formation, and that only parts of the virus’genetic material are expressed. Cardiac involvement leads to rapid heart pumping at rest (tachycardia) and eventually cardiac muscle pump weakening. Specific antiviral treatment has led to remarkable sustained improvement in CFS patients so that criteria for the diagnosis of CFS are no longer present. Medical testing by Holter monitoring, MUGA, nuclear stress testing, cardiac biopsy, virus serologic tests and disappearance of symptoms of CFS support this paradigm.

11 Lerner AM, Beqaj S, Deeter RG, and Fitzgerald JT. IgM serum antibodies to Epstein-Barr Virus are uniquely present in a subset of patients with the chronic fatigue syndrome. In Vivo.2004;18:101-106. A subset of CFS patients and specific diagnostic serum antibodies to cytomegalovirus HCMV) non-structural gene products p52 and CM2 (UL 44 and UL 57) indicate incomplete HCMV persistent multiplication. The results suggest that specific antiviral HCMV treatment is beneficial. A second Epstein-Barr Virus (EBV) distinct subset of CFS is defined. Fifty-eight CFS patients and 68 non-CFS matched controls were studied. Serum antibodies to EBV viral capsid antigen (VCA IgM and EBV Early Viral Antigen, diffuse (EA, D) as well as HCMV (V), IgM and IgG; VP (sucrose density purified V); p52 and CM2, IgM serum antibodies were assayed. Serum EBV VCA IgM positive antibody titers were identified in 33 CFS patients (Group A subset EBV VCA IgM, 62.3, neg < 20). EBV VCA IgM titers remained positive in CFS patients for 24-42 months.

12 Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S, Deeter RG, Goldstein J., Gottipolu P and O’Neill W. Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-Barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome. In Vivo. 2004;18:417-424. This is a prospective consecutive case control study from 1987-1999 of cardiac dynamics measured by radionuclide, ventriculography in 98 CFS patients. Controls were 191 patients with various malignancies who were evaluated in protocols requiring radionuclide ventriculography before initiation of cardiotoxic chemotherapeutic agents. The prevalence of abnormal cardiac wall motion (ACWM) in CFS patients was 10 of 87 (11.5%). With stress exercise, 21 CFS patients (24.1%) demonstrated ACWM. Cardiac biopsies in 3 CFS patients with ACWM showed a cardiomyopathy. ACWM in the controls at rest was present in 4 of 191 patients (2%) (p=0.0018). A progressive cardiomyopathy associated with EBV and/or HCMV multiplication is present in CFS patients.

13 Beqaj SH, Lerner AM, Fitzgerald JT. Immunoassay with cytomegalovirus early antigens from gene products p52 and CM2 (UL44 and UL57) detect active infection in patients with chronic fatigue syndrome. J. Clin. Pathol. 2007 Nov 23. AIMS: The purpose of this study is to demonstrate that the use of recombinant early antigens for detection of antibodies to cytomegalovirus (HCMV) gene products CM2 (UL44, UL57) and p52 (UL44) is specific in the diagnosis and differentiation of active HCMV infection in a subset of patients with chronic fatigue syndrome (CFS) which is often missed by the current ELISA assay that uses crude viral lysate antigen. METHODS: At a single clinic from 1999 - 2001 a total of 4,774 serologic tests were performed in 1135 CFS patients using two immunoassays; Copalis immunoassay and ELISA immunoassay. The Copalis immunoassay utilized HCMV Early gene products of UL44 and UL57 recombinant antigens for detection of HCMV IgM antibody, and viral capsid antigen for detection of HCMV IgG antibody. The ELISA immunoassay utilized viral crude lysate as antigen for detection of both HCMV IgG and IgM. RESULTS: Of the total, 1135 CFS patients, 517 patients (45.6%) were positive for HCMV IgG by both HCMV IgG by both assays. Of these, twelve CFS patients (2.2%) were positive for HCMV(V) IgM serum antibody by HCMV ELISA assay, and 61 CFS patients (11.8%) were positive for IgM HCMV serum antibody by Copalis assays. The Copalis assay that uses HCMV early recombinant gene products CM2 (UL44, UL57) and p52 (UL44) in comparison with ELISA was 98% specific. CONCLUSIONS: Immunoassays that use Early Antigen recombinant HCMV CM2 and p52 are five times more sensitive than HCMV ELISA assay using viral lysate and are specific in the detection and differentiation of active HCMV infection in a subset of CFS patients.

14 Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir treatment in Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up. In Vivo. 2007 Sep-Oct;21(5):707-13. BACKGROUND: We hypothesized that subset classification of Epstein-Barr virus (EBV) in chronic fatigue syndrome (CFS) is required. At first, a blinded-random placebo-controlled trial of valacyclovir in EBV CFS subset was performed (Group 1), and this EBV subset was followed for thirty-six months (Group 2). Patients were given valacyclovir at 14.3 mg/kg every 6 hours. The validated Energy Index (EI) point score assessing physical functional capacity, Holter monitor, multigated (radionuclide) MUGA rest/stress ventriculographic examination, EBV serum IgM viral capsid antibodies (VCA), and EBV early antigen diffuse (EA) were followed. After six-months, Group 1 CFS patients receiving valacyclovir experienced an increased mean least square EI point score +1.12 units (122 kcal/day), while the placebo cohort increased +0.42 EI units (65 kcal/day). EI point scores at Group 2 increased progressively. Sinus tachycardias decreased and abnormal cardiac wall motion improved. Serum antibody titers to EBV VCA IgM decreased. Patients resumed normal activities. Rescindinc (talk) 23:49, 4 January 2009 (UTC)

Every single one of these studies is by Lerner. Nobody else has replicated this. In fact, the consensus among the scientific community is that viruses are not the cause of CFS, only a trigger at most. I think this falls under WP:Fringe --sciencewatcher (talk) 23:51, 4 January 2009 (UTC)

First, to assume a single cause of CFS "not THE cause" instead of "not A cause" indicates that you are applying the wrong model. Virus are not THE cause of Cancer, some virii are statistically associated with some forms of cancers is a correct statement. CFIDS is not one illness, it is a catch all for all illness that have a subset of symptoms from the same criteria set and which conventional medical practise cannot sub-categorize nor treat. It is the edge of the known medical universe/compentancy.

Within it there are many subgroups, just like with cancer. Second, I would suggest looking at Ampligen, which is an antiviral, which has been approved in Canada and Spain for use for CFIDS on an experimental basis. Personally I'm not crazy about it, but with proper testing for Rnase-L levels, it seems to be helpful. Returning to your assertions, show me a study that attempted to replicate Lener's work and found no impact? Your claim speaks to an issue of non-funding, not non-significance. It is not evidence based.

If anything, your post could be deemed to be defamatory against Lerner unless you can produce studies that tried to closely replicate his work and failed.

Lassesen (talk) 00:51, 5 January 2009 (UTC)

Montoya has replicated the HHV-6 studies. De Meirleir, Chia, Kerr, Peterson et al have all shown that if you can defeat the active infection (be it viral or bacterial), you can defeat CFS:

http://www.scivee.tv/node/7965/video

Rescindinc (talk) 01:08, 5 January 2009 (UTC)

Sciencewatcher, the standard for Treatment (separate Article I suggest) established is an RCT (random controlled trial or equivalent) published in a peer reviewed journal, repeatability is a bar too high to jump in CFS treatment. To my knowledge only EFA’s have achieved this unless you count therapies. The fact that research in any area is only conducted by one or two researchers does not reflect the credibility of the work, more the funding available, such that if one researcher is funded another may not. Jagra (talk) 03:13, 5 January 2009 (UTC)

An RCT would certainly be worth mentioning, but I don't see any from Lerner. 11 patients doesn't constitute an RCT. --sciencewatcher (talk) 14:35, 5 January 2009 (UTC)

Correct not an RCT but a gold-standard double-blinded, placebo-controlled, phase III crossover study of patients with CFS (a higher standard than CBT trials for instance) here although small is worth mentioning in the Treatment Article suitably Qualified of course. Jagra (talk) 02:04, 6 January 2009 (UTC)

That link seems to be missing some results. It gives EI and symptom scores for the placebo group after 6 months, but no results for the treatment group. They then compare the placebo group AFTER the placebo group has been given the treatment. It all seems very strange - why don't they give the results for treatment vs placebo? --sciencewatcher (talk) 02:55, 6 January 2009 (UTC)

Well the study does go for 18 months and the figures are given for 12 and 18 months. The 6 month figure seems to be to determine placebo effect. The authors do say some data analysis is unpublished, perhaps you should contact them? Jagra (talk) 01:14, 7 January 2009 (UTC)

It's a pretty basic piece of info and I shouldn't have to contact them. But from what they do say, in the 6 months after treatment you can see that the improvement is virtually the same as the improvement from 6 months on placebo. Of course this doesn't prove anything because you're not comparing anything that can be compared, but if did want to draw a conclusion it would be that the treatment is no better than placebo. But as there are only 4 patients in the placebo arm you couldn't really draw much of a conclusion anyway even if the results were positive. It seems to me this is a case of clutching at straws because you want the results to be positive. --sciencewatcher (talk) 04:32, 7 January 2009 (UTC)

Virus and Bacteria Hypotheses

Template:RFCsci It seems that there has been a new finding on the virus etiology of CFS, if this report has any credibility? This recent news release, [72] on a new virus associated with Shingles in CFS, may well explain a CFS subgroup? Well yes, a long way to go but;

- If nothing else it goes to show the shortage of funding when researchers have to appeal for funds from the public on TV!

- Would it not be ironic if these findings prove to be the link between CFS (as US research) and the post-mortum findings of ME patients such as Sophia Mirza? Jagra (talk) 03:13, 5 January 2009 (UTC)

It is interesting that eMedicine's Chronic Fatigue Syndrome: Treatment & Medication by a Prof of Medicine, updated Jul 16, 2008 cites both viral and bacterial infections. Medications cited include Antibiotics, yet to mention Antibiotics in this article results in it being deleted. Deleting alternative opinion is cited as a inappropriate.

What are the REFERENCE TEXT BOOKS for CFIDS? I would assert that these two texts are what exists:

1. Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances; (Hardcover, 2000) by Roberto Patarca Montero , Kenny De Meirleir
2. The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome (Hardcover, 1992)

by Jay A. Goldstein (Editor), Byron M. Hyde (Editor), Of course, I am open to counter recommendations or additional texts..... We need to establish clearly what the reference texts are.

I would support these sources as "standard medical textbooks" on the subject of ME/CFS/CFIDS Jagra (talk) 00:56, 6 January 2009 (UTC)

The virus hypothesis is in article all ready, research in mechanism section. Antibiotics do not have recognize in major journal reviews. The bar is higher then a news release for WP medical articles. RetroS1mone talk 05:26, 6 January 2009 (UTC)

Thank you I will be reviewing same, and as I said above Well yes, a long way to go but; No-one has suggested it is a RS for CFS Article but it would be RS in other wiki Articles where news reports are cited, and by a long tradition (not that i expect you to be familiar, so for your edification) is an acceptable item for discussion on this page. Jagra (talk) 00:58, 7 January 2009 (UTC)

A previous version here of CFS Pathophysiology had an extensive listing of studies on bacterial involvement in causing and complicating CFS and a previous treatment subarticle had treatments. Jagra (talk) 03:46, 8 January 2009 (UTC)

Reliable Sources

Template:RFCsci There is considerable disagreement over what is a reliable source for CFIDS. It is proposed that the following be deemed to be reliable source for citation for CFIDS.

1. Peer Review Specialist Journals, such as Journal of Chronic Fatigue Syndrome
2. Collections of articles from peer-review journals publish in book form, example Hyde (the only self-publish aspect is the selection of articles and I think one short article). "widely recognised standard textbooks written by experts in a field"
3. Proceeding and Papers presented at CFIDS Conferences including the following ones: CFIDS Association of America, American Association for Chronic Fatigue Syndrome

In general the following criteria should be used to prevent non-researchers tossing in their own bias. If a researcher publishs in a journal or presents at a conference then either we deem the researcher to be unreliable and thus by inference

1. any journal they publish in, or conference they present at should be deem unreliable, and other authors that publish there are also deemed unreliable

OR we deem the research reliable

1. any journal they publish in, or conference they present at should be deem reliable.

The researcher by publishing in a journal or presenting at a conference is making a clear statement about its significance, importance and reliability. Without an objective criteria that may be easily used by other authors, the different POV will result in this article becoming a battleground. It is not for the editors or authors of this article to arbitary make judgment calls on the content, deeming ideas they dislike as not reliable and items they like as reliable. —Preceding unsigned comment added by Lassesen (talk • contribs) 01:23, 5 January 2009 (UTC)

The following are proposed experts in the field (it is essential to establish who are the experts to reduce disagreements):

1. Dr Byron Hyde
2. Dr. David S Bell
3. Dr. Dan Peteron
4. Dr. Paul Cheney
5. Dr. Cecile Jadin
6. Prof Garth Nicolson
7. Dr. Nancy Klimas
8. Dr. K De Meirleir
9. Dr. Daniel Amen (SPECT analysis of CFIDS)

Are there additional experts people would like to nominate? Minimum requirement is a M.D.

Lassesen (talk) 01:43, 5 January 2009 (UTC)

Lassesen it is not for voting what sources we can use, we use the same sources other medical articles use, top journals and mostly reviews from them by experts in field. People that publish in Lancet BMJ and stuff. RetroS1mone talk 02:16, 5 January 2009 (UTC)

I am not attacking these people Lassesen i am thinking they are good people and scientists but look,

1. Hyde B no primary research, a letter to the editor in Lancet in 1988 and an essay in low impact report in 1991.
2. Bell DS four papers last in 2003
3. Peterson DL, six or seven papers last in 2002
4. Cheney PR five or six papers last in 1997
5. Jadin CL Nothing on Pubmed, i think is alternative medicine person on websites

It is becoming evident that you are really not familar with anything but the ability to search PubMed, BMJ and journals -- i.e. a librarian. She is definitely not an alternative medicine person, but a surgeon who grew up around Charles Nicolle (Noble Prize) Paul Giroud, JB Jadin (her father) and Legac of the Pasteur Institute. She is in fact very very old school. You have confirm your ignorance of the experts in the field -- you are guessing based on simplistic rules being mechanically apply. I.e. an absence of knowledge that will likely do this article more harm than good I am sorry to say.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

1. Garth Nicolson, two primary research articles in low impact journals and says he finds mycoplasma in blood from CFS people. Thing is, mycoplasma is everywhere, lots of healthy people have evidence from it.

I am oblige to make several points

1. first, you appear to be trying to get a discussion of the topic by challenging research -- inappropropriate
2. second, emedicine is in major disagreement about you opinion [ http://emedicine.medscape.com/article/223609-overview "Although scientists have isolated at least 17 species of Mycoplasma from humans, 4 types of organisms are responsible for most clinically significant infections that may come to the attention of practicing physicians."], I see at 6 more authors there stating the same thing. You have made a major point concerning your medical knowledge (lack of, that is), and should really move on to different waters....
3. third, you also are clearly showing a significant bias and intolerance of alternative POV, and because of that should gracefully move on elsewhere.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

1. Klimas N, 20 pub lications since 1990 mid to low journals
2. De Meirleir K, 40 publications in mid to low journals like including SIX in Medical Hypotheses
3. Amen D no pubmed results

Pls do not mistake activity on activist websites and publishing in activist newsletter as expertise for WP, you have some very good interesting ideas but WP is not looking for cutting edge radical ideas it is from people that are mainstream, when you change that and prove the RNase L thing or what ever is cause of CFS or antibiotics cure it then it will be reviewed in Lancet and WP puts it up with your name on it! RetroS1mone talk 02:58, 5 January 2009 (UTC)

Again, the point is avoided with polemics. WP for medical articles cites experts --- I am asking for discussion on who the experts are -- you are declining to answer/present your experts. Avoidance?

If you are an editor or contributor on this article, you should have no problem providing your recommended list for:

1. Experts in this area, MD's of course, because this is a medical topic. For example, Dr. Amen is a MD, Distinguished Fellow of the American Psychiatric Association, Assistant Clinical Professor of Psychiatry and Human Behavior UC, Irvine , School of Medicine, board-certified ( American Board of Psychiatry and Neurology ) in child and adult psychiatry -- with my last conversation with him, he did not advocate CBT for CFIDS but does advocate a program that deals with the infections and brain trauma seen on SPECT.
2. Text Books on the condition, not books that mention it in passing, but books that are on this topic alone
3. Journals specializing in this condition

If you and other editors that delete freely (aka censors) are unable or unwilling to disclose your list, then this may be an item to refer to mediation ASAP. We need to get the foundations laid and fully disclosed.

Lassesen (talk) 05:21, 5 January 2009 (UTC)

How did Retro get 40 publications for "De Meirleir K" in PubMed? I get 80, with 6 reviews. Google Scholar shows 207. Further, he has at least one book on the subject published by CRC Press. Also, just because you haven't heard of a journal doesn't mean it's a "low or mid" level journal. Specialized journals are often preferred in the actual fields, because specialists tend to read them more than they read the general journals like Lancet. According to this article, Merleir has published more than at least 600 articles and sees 3000-4000 patients annually. The 600 figure may be exaggerated, but he likely has several articles in scholarly books. I haven't checked any of the other people you brought up. I have a feeling we're projecting our amateur impressions onto the field. It seems as if two of the most vocal people on this page, sciencewatcher and RetroS1mone, are imposing their limited worldview on this article very forcefully, and are rather quick to dismiss and delete credentialed people who are in the thick of the research and have PhDs as well as MDs. The researchers have relevant views which should be reflected in the article. II | (t - c) 08:51, 5 January 2009 (UTC)

Similarly, PubMed search for immunologist "Klimas N" yields 107 publications. Her faculty profile states that she is "current President of the International Association for Chronic Fatigue Syndrome ... the principal investigator of the National Institute of Health's (NIH) Center for Multidisciplinary Studies of CFS Pathophysiology at the University of Miami ... [and] has been appointed to the inter-agency CFS Coordinating Committee, chaired by the Surgeon General of the United States". 3 books and 19 invited chapters. She has a recent 2007 review, PMID 18177602, which I don't have access to. I think this shows that we have to take RetroS1mone's word with a heavy grain of salt.

Both Klimas and Meirleir are editors of the JCFS. Clearly it's not that these people, and that journal, is fringe. Who knows why it's not indexed in PubMed. And really, it doesn't matter much, since it doesn't seem to have many reviews anyway. II | (t - c) 09:36, 5 January 2009 (UTC)

Two request, please sign your name when you submit and pls indent with colon so we follow the discussion better. Thx!

OK, I searched on these people and chronic fatigue. Example, Simon Wessely has more then 400 articles, only 120 of them about CFS so when we talk about his CFS work the 120 is important. Klimas is hard bc she some times uses Klimas N and Klimas NG, not all Klimas N on Pub Med is Nancy Klimas. And by the way not every thing on Pub Med is really med rs, look at Medical Hypotheses where De Meirleir has so many papers just one example.

But who cares my point was, we do not make a list from accepted experts and we do not vote on it, all of the people from the list by Lassesel but may be Klimas and De Meirleir are just publishing not much and mostly together with each other. Some CFS researchers a minority have a fringe view. Their fringe view is may be right!! Five years from today De Meirleir can have the Noble Prize for curing CFS!! It is not matter for the article today, we can not see into future so we use WP:MEDRS, not by people's resume and what organization they started, not by "my last conversation" with some one, not by OR and POV. WP is for the general reader, not for specialists in a fringe of a field.

WP does not have a test for who can edit, except edits should be in WP guidelines. De Meirleir or Jason and RetroS1mone are equal on WP, they do not have to be MD or give a list of experts they like. You can think I am dumb that is OK!! You can take me "with a heavy grain of salt" but we need go on WP guidelines, not hectoring by people who say they are experts in field.

Final let us pls forget the JCFS it is just not MEDRS. There are 4000 articles, 1000 reviews on CFS on Pubmed and some are in very good journals. It is just not true, people that research CFS publish just in specialist journals so we need to use them. It seems for me some people started a journal to publish stuff they could not get published other places, there is nothing wrong with that it is great! But we need the general medical opinion on WP, not the may be very good but very specialist ideas from an obscure journal not on Pubmed. Also alot of the more obscure stuff is in the subarticles now.

People really I am not slamming your research it is great and pls keep up and thank you for what you do!! But it is not main-stream yet and when you want to put it on, pls have a good review from a top journal like Lancet or BMJ. Thx. RetroS1mone talk 13:10, 5 January 2009 (UTC)

Retro, you are definitely struggling hard in your attempt to sound knowledgable, but per what was evident above, you are using rhetoric tricks to try winning an argument instead of reason. You appear ignorance of much of the literature on Chronic Fatigue Syndrome (you demonstrated that above), you have low / no tolerance for alternative POV, you have poor medical knowledge (demonstrated by your comments on mycoplasma). May I serious recommend firing your retros and changing orbit, perhaps elsewhere? The rest of your rhetorical comments are not worth answering -- it's a waste of my time.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

Not only does there seem to be disagreement over what is reliable source, but also about what is allowed to be mentioned from reliable secondary sources. - Tekaphor (TALK) 09:05, 6 January 2009 (UTC)

BMJ Clinical Evidence is "one of the world's most authoritative medical resources for informing treatment decisions and improving patient care." [73] The CFS Clinical guide (= headline message) says of CBT: "There is moderate evidence of benefit for CBT in CFS. The effectiveness of CBT for CFS outside of specialist settings has been questioned. The results of the multi-centre RCT [29] suggest that CBT may be effective when administered by less-experienced therapists with adequate supervision." The quality of the trial evidence of interventions was assessed using GRADE, and the CBT trials were rated "low" or "very low" quality [74] Where are those strong caveats ("moderate evidence" "effectiveness...questioned" "low quality") on WP?

Patient UK [75] is a reliable site (listed by www.direct.gov.uk) that gives "The same info as provided by GPs to patients during consultations." Their CBT info states "One problem is that CBT is not widely available in the UK on the NHS. If it is available in your area, it is certainly worth considering in addition to any other treatment. Also, like graded exercise, the research studies did not include those who were severely affected with CFS/ME and it is not known if it will help in this situation. Also, some people who start a course of CBT (for any condition) drop out of the course for one reason or another as CBT does not suit everybody." [76] Reasonable caveats, so why are they not mentioned here?

In general, I prefer nationally agreed guidelines and info sources like these to single journal articles, which are often polemical in intent if not in expression, and should be used to inform an encyclopedia article but not to substitute for editorial control. Sam Weller (talk) 11:15, 7 January 2009 (UTC)

Text Books

I added a section of what appears to be the major collections. Some one proceed to add a book that they appear passionate about -- unfortunately it is not a collection but a POV work of two authors. I have removed it. I believe to maintain a NPOV we need to avoid all books that are individual works of authors and not collections of the most significant authors. Example, Hyde's book required over 100 authors to consent to republish their articles. It means that 100 authors (and often their publishers!) supported this collection. A rather strong statement of the importance of the collection and also the expertise and expert's respect of the editors of the collection.

I am hoping this will establish a rational NPOV for this entry. To dismission the collection is implying that you are dismissing all of the authors that consented to be included. Lassesen (talk) 16:54, 7 January 2009 (UTC)

ScienceWatcher just added the single POV back in and deleted one that does not agree with his POV. It almost appears the Michael8564 (just created login today!) and ScienceWatcher may be the same person.

Lassesen (talk) 17:03, 7 January 2009 (UTC)

If a textbook meets WP:MEDRS then I think we need a very good reason to ban it. On what policy or consensus are you excluding books? I do not agree with the conclusions Lassesen reaches above, as textbooks by a single or few authors (note textbook is a single word) can often be the seminal work in a field. Classing all such works as POV is, well, POV! Verbal chat 18:00, 7 January 2009 (UTC)

Meeting the WP:MEDRS is a subjective decision, with many books banned without any reason but a vague 'Not Reliable'. I am in agreement with you for general medical books; My biggest objection is slamming of books on fragile grounds without explanation. I went very conservative on the choice of books, keeping only ones that have divergence POVs in them. ScienceWatcher is imposing his POV and preventing alternative POV from being posted IMHO. He is on a crusade.

Lassesen (talk) 18:47, 7 January 2009 (UTC)

No, I'm not the same user as Michael8564, and for future reference I never use a different username on wikipedia. I do occasionally log on as my ip address, mostly on articles related to my hometown, but never on the same articles I edit as User:Sciencewatcher. Anyway, as for the textbooks: the "CFS/ME: the facts" book is published by a respected academic publisher and written by experts. And you don't need to have hundreds of contributors for it to be an authoritative textbook. The Hyde book is self-published and the authors are not academics as far as I know. Perhaps the Hyde book fits in more with your POV, but that is no reason to include it at the expense of more authoratitive textbooks. As Verbal says, we should be including books only based on WP:MEDRS. The Sharpe book meets this criteria, but I don't think the Hyde one does. --sciencewatcher (talk) 18:06, 7 January 2009 (UTC)

The problem is that you slam books without cracking the cover. The choice of articles was reviewed by Paul Levine, M.D., National Institute of Health, a key player in defining Chronic Fatigue Syndrome, who provided a foreword. You are painting the book with tar and feathers to advocate your own POV. Single author (thus single POV) books should not be deemed textbooks for this illness -- We need a decider and I am deeming what the CDC deems reliable or contribute to as being reliable and expert. Anyone recieving a grant from the CDC should be deem to be an expert. You argue without any reference to external authorities --- only your own words. Please provide the authority that you are working off. Note I use the word AUTHORITY and not expert. National department of health are authorities.

What is the problem that you are having with restricting books to only collection of articles (say with 10 different authors being needed?) so we have some NPOV. Advocating any single author is advocating a POV with this disorder Lassesen (talk) 18:39, 7 January 2009 (UTC)

Your interpretation of "POV" and reliable sources is somewhat at odds with the usual wp definition, so in order to adopt your versions you'll have to demonstrate consensus for them. At the moment this isn't the case. Having one or two authors does not make a book or paper a POV source. I also agree with SW in the section below this. Verbal chat 19:17, 7 January 2009 (UTC)

The Facts: Does not appear to be a textbook in intent

Chronic Fatigue Syndrome (CFS/ME): The Facts, Frankie Campling, Michael Sharpe, 2000, Oxford University Press, ISBN 9780192630490 The following quote indicates that it is a patient information book, p. 36

"What do I do if I have been given one of these diagnoses?

Discuss it with your doctor ....."

I believe it should be removed -- please rationalize it inclusion as a textbock in the next 48 hours. I would advocate adding a 'Patient Information' section and place it there as a more appropriate handling Lassesen (talk) 20:19, 7 January 2009 (UTC)

It meets WP:MEDRS, I see no coherent reason for it to be excluded. Time limits of that sort are not usually used on wikipedia, as they are seen as confrontational.Verbal chat 20:31, 7 January 2009 (UTC)

Verbal, you mean this book catergorized a "popular works" at this worldcat site meets the "standard medical text book' definition of WP:MEDRS? IMO nonsense but if others can confirm this i will be happy to work to this definition in future, as it allow will just about any popular title with CFS in it! Jagra (talk) 00:18, 8 January 2009 (UTC)

sciencewatcher, on what grounds do you claim the Nightingale book is The Hyde book is self-published and the authors are not academics as far as I know. this is a nonsense and even POV propaganda. Any reading of the book will indicate many many academics among the 125 authors and 75 chapters. Furthermore it is clearly published by the Nightingale Foundation as its ISBN 0969566204 entry will show. Editors were Dr Byron Hyde, who wrote 2 papers Dr. Jay Goldstein of the CFS Institute California and Dr. Paul Levine of the National Institute of Health (NIH) USA The editorial panel clearly were qualified for peer review. Comments by specialist peer reviewers are included at the conclusion of some papers including Hyde paper. Furthermore The publication was funded by some 12 Principal benefactors and 20 benefactors, 35 others provided significant assistance and some 115 provided some financial assistance. All are listed in the publication, and it does not include the authors. It contains many reviews by experts and This WP:MEDRS discussion indicates that conference papers may not always be peer reviewed but conference papers included in a journal supplement or published with a medical and scientific editing process (such as in a medical book like this ) can be considered peer reviewed. So explain your POV Jagra (talk) 00:18, 8 January 2009 (UTC)

Nightingale Foundation is Byron Hyde's charity, therefore self published. I could set up my own charity by filling in a few forms, but it wouldn't mean my charity's books would be reliable sources. And in future, please keep your comments civil, thanks. --sciencewatcher (talk) 01:44, 8 January 2009 (UTC)

SW --- Civil? Like deleting the entire textbook section with our discussion "RetroS1mone (Talk | contribs) (67,289 bytes) (→Textbooks: change to further reading, remove OR about principal textbooks who says they are textbooks what courses use??) (undo) "

Look, I have tried to build consensus --- build a common foundation, in a positive manner --- asked you for your suggestions of a list of experts and textbooks. You have made any suggestions -- instead you delete without discussion or explanation.

Lassesen (talk) 02:03, 8 January 2009 (UTC)

First of all, that change was by Retro, not me, and secondly she didn't even "delete the entire textbook section", she renamed it. And third I have not deleted anything without discussion or explanation. Your behaviour here is starting to become disruptive. --sciencewatcher (talk) 03:43, 8 January 2009 (UTC)

SW , Nightingale Foundation is Byron Hyde's charity A Foundation has a seperate legal identity to Byron Hyde and any other person, and will survive him and other directors. Your comment means nought, It is controlled by a Board of Directors, 10 of which are listed in the book of which 5 are doctors, does that mean it is also each directors foundation? please do not obfuscate with propoganda, give meaningful answers so that this serious allergation can be addressed.Jagra (talk) 02:19, 8 January 2009 (UTC)

Well here's the answer to yer allergation...

I know what a charity is. My wife is the president of a Canadian non-profit which is in the process of becoming a charity and has something like 5 directors, and I have been a company director/owner for over 11 years. A foundation is just another name for a non-profit organization. Byron Hyde is the founder of "his" charity. Anyway the point is that a charity isn't a MEDRS, whereas an academic publisher, such as OUP or Wiley, is. --sciencewatcher (talk) 02:57, 8 January 2009 (UTC)

OK show me where MEDRS says a foundation as publisher is not on, when it contains papers presented at an International Conference on CFS, written by experts, academics, edited and peer reviewed by respected medical and scientific experts, containing RCT trials and reviews by experts and referenced extensively. How is this different to medical textbooks printed in the third world? Jagra (talk) 03:21, 8 January 2009 (UTC)

It doesn't say anywhere. The MEDRS page doesn't say exactly what is and what isn't a reliable source, it just gives guidelines and a few examples...you need to use your judgement. If you want, bring it up at the reliable sources noticeboard, if it hasn't been discussed already (and if my memory serves, I think it might have been). --sciencewatcher (talk) 03:33, 8 January 2009 (UTC)

Academics

Sciencewatcher has stated above that he believes all experts should be academics --- not researchers, not MDs who are well experienced (in some cases 20+ years of full time treatment almost exclusively of this disorder). I believe this points out the problem --- he's believes academics are gods.... I am in major disagreement and the WP:MEDRS does not support this odd spin. Lassesen (talk) 18:53, 7 January 2009 (UTC)

Poor choice of words. What I meant was respected experts, rather than self-appointed experts. I don't dispute Levine is an expert, and if the book was edited by him alone and published by an academic publisher, I wouldn't have a problem. And as for your comment about POVs: having 100 contributors doesn't stop it from being POV. If the editor has a POV then obviously that will influence their selection of articles. What is important is the reliability of the source, and as far as I am aware MEDRS doesn't say that collections are better than works written by one or two authors. --sciencewatcher (talk) 19:12, 7 January 2009 (UTC)

How do you determine 'reliable'? Are MD presenters at most of this disorder's conferences experts or not experts? These conferences do have a high percentage of patient attendance -- but that has nothing to do with reliability.Lassesen (talk) 20:35, 7 January 2009 (UTC)

Look at WP:MEDRS and WP:RS. There is a reliable source noticeboard where you can ask for a broader consensus. Usually high impact factor and well respected journals such as Lancet, BMJ, Nature are obviously reliable sources. Others might require a bit of discussion first. Just being an MD or PhD working in an area doesn't make you an expert. Verbal chat 20:42, 7 January 2009 (UTC)

Can you please explain to me how you see it matching?

• "widely recognised standard textbooks written by experts in a field" to me, mean books intended for clinical use or at University and not patient use. This book is clearly not such.
• "medical guidelines and position statements from nationally or internationally reputable expert bodies" -- there is no body associated with this ( OUP is not a body).
• Reading through pages, it is not primary, nor seconday and questionable if it is a tertiary source

I want to know clearly where, because if the bar is as low as I view it, I have 40 books to add to the list.

Lassesen (talk) 23:48, 7 January 2009 (UTC)

Byron Hyde

Several MDs have been often attacked on this discussion. May I point out that:

• Handbook of Chronic Fatigue Syndrome contains an article by

him TOC

• Klimas, Jadin, Bottero and Hock have articles in Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances TOC Lassesen (talk) 20:35, 7 January 2009 (UTC)

Reported attacked? Does it meet WP:MEDRS? I seem to recall it being self-published. Verbal chat 20:42, 7 January 2009 (UTC)

Self-published means publishing their own work. He did not published it, a government recognized charity with a board of directors publish it. The content is not his own work but that of over a 80 authors that consented to having their work republished --- the selection decisions was reviewed by the head of CFS studies at CDC at the time! who supplied a foreword. Using your definition, if a head of department working for the CDC has a book published by the CDC with himself as a editor -- it is self-publishing. Get a copy of the book at your Medical Library and read the foreword and check the list of authors. Scratch beneath the surface! He has published in the Lancet: Hyde BM, Bergman S (1998), Lancet, Nov 19;2(8621):1191-2, PMID: 2903396

Lassesen (talk) 23:48, 7 January 2009 (UTC)

The CDC carries a lot more weight than a charity. Also, what about Jay Goldstein? Does he publish university- or government-funded research in respected peer reviewed journals? From the looks of it, he an MD who has some WP:fringe theories. --sciencewatcher (talk) 00:14, 8 January 2009 (UTC)

Verbal, self published i seem to recall!!!! this is propaganda speak, so please have the decency to explain. Yes SW and a Pubmed search for J Goldstein brings up 2097 papers, now clearly not all his, you can sort it out, but Goldstein Jay brings up 48 and in a range of mainstream journals, so much for the fringe theory smear. Jagra (talk) 01:15, 8 January 2009 (UTC)

Ha, you need to actually check those search results. A lot of those "Goldstein J"s are in London, so probably not the same person. Adding CFS to the search gives 2 results, both involving the dubious research with Lerner that is discussed above. There may be more, but I'm not entirely sure how to do the search. From the wikipedia entry "His practice utilized many different pharmaceuticals in the form of eyedrops and nasal sprays, based on the theory that they directly affect the receptors on the trigeminal nerve. Another peculiar part of his treatment protocol is the administration of several medications with a rapid onset (such as eyedrops, intravenous infusions and mouth swirls) during the course of an office visit, until the patient got better or the time ran out.". That certainly sounds like WP:Fringe! --sciencewatcher (talk) 01:33, 8 January 2009 (UTC)

Rerovirals

As someone who hasn't visited this article in some time, I am pleased to see that it's been broken out into subdivisions and properly cited inline (which tells you how long it's been since I was last around).

However, I note some distressing tendencies.

Firstly, the article is getting rather thick on the medical-speak, and may need a 'jargon' tag or some simplification in order to be a bit more useful to the average non-MD reader.

Secondly, there's rather a bit of bias showing.

I note that while "one study" (Conceptual issues in undifferentiated somatoform disorder and chronic fatigue syndrome) gets a mention as if it's meaningful data and isn't countered at all (despite the fact that as far as I can tell, the study is exclusively talking about *psychiatric* differentiation and utterly ignoring all the physical evidence, such as the genetic and neurological differences). And yet someone up there on the talk page seems to be saying that the viral studies don't deserve a mention! I cannot believe that the extremely significant and popularized Valcyte trial is not mentioned anywhere in this article, as but one example of the many antiviral treatments being researched, such as Ampligen.

There is no mention of the controversy over either of the two major treatments mentioned, which indicates bias to me. The reliance on the Cochrane Review statement on cognitive behavioral therapy sounds distressingly like "blame the patient" in the part where it says "A treatment can only work if patients agree to it". There are plenty of CFS patients who have tried CBT in good faith and failed to receive any benefit. And the extremely large controversy around CBT proponents' efforts to divert CFS research and treatment money *away* from other therapies is something that should not go without being said.

I note that graded exercise therapy can be summed up as "Science says it works, but patients say it doesn't". This is also biased, and not entirely accurate, as there are "titled" objections to GET as well.

At the absolute very least there should be some mention of the idea that since CFS' cause is yet undetected, all these mentioned treatments are nothing but palliatives targeting the symptoms, and as such cannot expect to effect a cure.

I also note a shockingly large UK bias in the references. This distresses me, as it is the UK which is home to the largest proponents of the idea that CFS/CFIDS/ME is something which can and should be entirely treated with CBT and a little GET, and which is also home to the greatest controversies over research directions.

The 'mechanism' section is rather slender, especially when one considers that this article doesn't seem to bother at all with any mention of current research into CFS, particularly anything non-psychosocial. And oh, look, there's our bias again: Science says CBT works, but "though some individuals with CFS firmly reject any psychological involvement and believe strongly that their condition has a physical cause." Let's not mention that some *doctors and scientists and researchers* are also firmly in this camp.

For those who are about to ask me why I'm not making these changes myself, I shall point out that I am also a patient, and don't have the time and energy to fight edit and revision wars. I do, however, expect better than this of Wikipedia, and if I don't see changes I will start slapping 'bias' tags and the like around.

Feyandstrange (talk) 12:58, 5 January 2009 (UTC)

I am sorry about your sickness i wish you the best, but the article is not for patients or specialists it is for the general reader. It is also a medical article, so we use medical reliable sources. The mechanism section is slender bc nothing has been proven and no one knows a mechanism. That is what the good reviews in good journals say, it is not my opinion. CBT and GET are featured BC the reviews in good journals say they are the only interventions what have been helping patients, also not my opinion just what things in the Lancet and other medrs says. It does not work for every one, but some people do think it can cure some people. RetroS1mone talk 13:15, 5 January 2009 (UTC)

Retro, you are ranking journals very inappropriately, almost upside down. You are applying rules simplistically and mechanically. People engaged as treating physicians and researchers do not pay much attention to your 1st class journals -- EXCEPT to comment on the articles, often blasting them, have you read all of the comments (online and in print on the CBT articles?). I'm a past member of the American Statistical Association and worked as a medical statistican --- the CBT trials are very flawed -- their results can best apply to those that have CFIDS and who are marginally capable of employment. They are randomized over a very selected sub-population (which they do not declare, but which anyone with first hand experience of the CFS population can see.

Please supply your list of experts (MDs), Text Books, and Journals specializing in CFS that you deem we should work off as a foundation. You have been negative about anything that does not fit you POV. I am asking you to be positive by providing those list. I will be shortly updating the entry with these foundational facets -- so I trust that you (or others) will not delete them because you do not agree with them. Please speak up and do a positive action of providing your list.

By the way, IMHO Simon Wessely is not a leading expert IMHO -- you have provided the evidence yourself, less than 1/4 of his articles are dealing with CFS. If anything, he is a professional writer (500+ articles indicate little research time on 'hands on time'. He is 2nd rank at best.

Also remember that the reality in medical journals is that what gets publish generally reflects the 'establishment' prestige of the person and conformity to current bias -- and not the quality of the research. I trust that you do not have a naive view of medical publication being above board....

Lassesen (talk) 15:13, 5 January 2009 (UTC)

I think the reason that there are so many UK references is simply that the UK has done more research than most other countries. A lot of government money has been put into research, treatment, management, etc. in the UK. In most other countries little or no funds have been given to research. The USA is about the same as UK for research, although they haven't done anything about treatment/management. Canada (where I live) is pretty pathetic - no research, no treatment/management. The patients are pretty much left to themselves, apart from a few well meaning doctors such as Stein and others, but how much benefit can they do on their own? --sciencewatcher (talk) 14:55, 5 January 2009 (UTC)

As for the article: there is an entire sub-article devoted to controversy, and it should cover all the bases. As for Ampligen, according to the Ampligen article, trials have been done, but it hasn't been approved. It would certainly be worth mentioning if it isn't already in the CFS articles. --sciencewatcher (talk) 14:55, 5 January 2009 (UTC)

Considering that the CDC was caught in an audit on major mis-allocation of fund specified by Congress explicitly for CFS research[Audit] -- it indicates a major problem in the medical industry concerning CFS. If anything, it suggests that the Lancet and BMJ will minimize CFS articles and then be very selective in what is published. Research is often paid for when there are side benefits -- for example, Simon Wessely is a consultant to the UK Army and thus the government has much to gain if GWI and CFS are handled in a way that reduces their costs; consultants write to and for their customers -- they are unemployed if they are idealists.

I would advocate that the article be broken apart into different articles each with various POV -- CBT does not belong on the main page. People work only on items that matches their POV and the only items on the main entry are items that there is complete agreement on

Lassesen (talk) 15:13, 5 January 2009 (UTC)

WP reports on the current state of controversies, and by NPOV policy includes all major views in the same article, giving emphasis to the viewpoint that seems to have scientific consensus, when there is such. This will necessarily give a bias to "establishment" views, but there is no other way to write a NPOV encyclopedia--anything else would be advocacy. What the advocates of other viewpoints are entitled to is that those viewpoints be presented fairly in the article. It is not appropriate to use this page for a discussion of what is the true etiology or the proper treatment of this condition-- Wikipedia is not suited for the purpose. If one has actual evidence, one should publish it in a reliable peer-reviewed journal; if one wishes to argue, there are blogs.

We necessarily give more weight to the major medical journals, and judge this by the extent to which they are referred to by other major sources and secondary sources--there is no other objective measure. An argument that they must be discounted as not reflecting clinical situation is not relevant here--this is a judgment we are not in an appropriate position to make. Again, if you have evidence to that effect, publish it properly. I point out your argument is usually interpreted to say that many practicing clinicians ignore the scientific evidence, and practice ignorantly and wrongly--but that's just an aside. I don't know what causes or cures this condition, and if anyone thinks they do, they need to convince others in the proper channels. DGG (talk) 19:52, 5 January 2009 (UTC)

Actually your approach done strictly is satisfactory to me. It means that since there is no treatment that is undisputed then the following sections should be removed:

1. Mechanism
2. Treatment
3. Prognosis
4. Epidemiology

There is no agreement or accepted practise in these area. To deem any one of the many POV more creditable is subjective. The CFS Research etc is very much out of the mainstream because the mainstream has a long history of being dismissive. The CDC behavior is mis-allocation of funds specified explicitly by the US Congress is the best and clearest demonstration --- this was caught by government auditors. How can you describe a mechanism without knowing a cause? The openning sentence says it all "given to a poorly understood, variably debilitating disorder or disorders of uncertain causation." If it is uncertain, how can you define treatment etc.... This is the only medical condition like this. I vote for deleting the cited sections entirely. The content is POV and effectively contradicts what there is agreement on.

Lassesen (talk) 23:52, 5 January 2009 (UTC)

Lassesen you should read WP:VOTE, it is not for voting what POV to use, WP POV is the POV of mainstream medical literature it is defined NPOV. All this stuff, misalocation funds etc that is original research. RetroS1mone talk 03:26, 6 January 2009 (UTC)

The matter of the Journal of Chronic Fatigue Syndrome as a Reliable Source has been referred to the appropriate [authorities]. If it is deems to be reliable, then I expect a lot of deletes to be undone.... promptly

Lassesen (talk) 05:28, 6 January 2009 (UTC)

Ward20 asked DGG about JFCS, DGG says [77]

"Now, Journal of CFS is in Scopus, so

of the 54 papers published in 2000, the most cited ones were cited 24, 21, 17 times.

of the 32 papers published in 2001, the most cited ones were cited 13, 13, 13 times

For papers of CFS in the journal Neurology

of the 2 papers in 2000 on this subject, they were cited 76, 31 times

of the 2 papers in 2001 on this subject they were cited 45, 25 times

For papers on CFs in the journal Lancet

of the 8 papers in 2001 on this subject most cited ones were cited 264, 117, 116, 60 times

(no full papers in 2000

Of all the 299 papers ever in JCFS, the 3 most cited were cited 44, 37, 36 times

This line is the most striking, and is enough to show it is not widely cited in the field. That does not mean it is unreliable." -from DGG

Conclusion, JCFS is not cited much in it's own field. DGG says it does not mean it is unreliable that is right it just means its not influential, but not being on Pubmed does mean it. I am guess, the problem is that to an activist that disagrees on main-stream medical, and reads alot on the internet alternative medicine stuff, and goes to obscure primary literature, you get this skewed idea from what the mainstream is. That is great, i think it is good people inform them self, i just hope they get good medical advise, but that kind of stuff is not for WP. RetroS1mone talk 06:08, 6 January 2009 (UTC)

Simone,look at your numbers a different way -- where is all of the reseach published? Neuorology and Lancet has 12 papers versus 299 papers. "not being on Pubmed does mean it" is wild speculation --- it was on pubmed in the past and on the subscription services --- but the publisher has withdrawn all of their journals (I will not, nor should you, speculate on why, 1st item of slamming). I am not an activist, I have been a moderator for 9 years on the biggest discussion group on the internet dealing exclusively with experimental treatment [78] and that excludes activism as a moderator. Activism is banned on that group. Do your homework! I have read, reviewed, digested, etc all of the main stream and alternative thoughts in CFS over the last 9 years -- I had to as a moderator and to insure that a reasonable POV was maintained in the discussion.

Using the term activist is slamming (2nd time in your post). You assert without prsenting evidence that I "reads alot on the internet alternative medicine stuff", if you examine [[79]] you will see what I read, PUBMED. (3rd time slamming in your post). "obscure primary literature" - is likely a reference to the Journal of Chronic Fatigue Syndrome, you wish it to be obsure because it challenges you POV. I have repeatedly asked you to present you list of who the experts in the field are --- you have remained silent (some people could concluded that you deem yourself to be one by your silence), I have also asked for your list of text books (again silence).

Please make a POSITIVE contribution and not a negative one, I have asked for appropriate lists to help build a consensus and to have openness in the sources of POV. You've opted to remain silent - correction, attack.

Lassesen (talk) 15:01, 6 January 2009 (UTC)

Patient surveys

I realise that patient surveys aren't considered "evidence published in medical journals", but they should at least be mentioned as significant minority opinion, which WP:RULES (supposedly) allows. These surveys represent several thousand patients, whereas Cochrane calculated CBT efficacy averages using under 400 patients. These groups represent patients suffering from "ME" and/or "CFS" and shouldn't be treated as obsure cults whose views only exist on some message board. Reliable sources include the CMO report, the PACE trial identifier, and the NIVEL document (?) that Guido was promoting. - Tekaphor (TALK) 07:54, 7 January 2009 (UTC)

Are you referring to the hasty deletion by User: Verbal of survey info added by anon? I thought it was interesting and appropriate information, and the responsible reaction would have been to request the citation. The additional delete justification of 'surveys aren't evidence' is ridiculous. National censuses? Postmarketing surveillance? Sam Weller (talk) 08:53, 7 January 2009 (UTC) I forgot to mention that your first sentence concedes a point that is actually incorrect, Tek. A search for "patient + survey" in the BMJ alone yields too many hits to assess. Of prime interest is BMJ 2006;333:1-2 (1 July), doi:10.1136/bmj.333.7557.1 Editorial: "Can patients assess the quality of health care?" It begins: "Patient feedback surveys are increasingly seen as a key component of monitoring and improving the quality of health care.1" The fact that WP editors are trying to sweep them under the carpet when they provide inconvenient information merely shows up the amateurish and parochial nature of much WP. Sam Weller (talk) 10:35, 7 January 2009 (UTC)

Usually patient surveys aren't allowed per WP:RS. For me a patient survey wouldn't qualify because a patient is too close to the issue. We shouldn't play doctors on ourselves so adding a patient survey to me would fall into the same line of reasoning. Surveys can be adjusted just by the way it's worded to get a result that is positive for the person taking the survey. I don't believe this should be used per reliable sources, sorry. --CrohnieGal^Talk 13:40, 7 January 2009 (UTC)

Absolutely agreed for every medical conditions that have established tests --- which is everyone EXCEPT this one. All of the CBT stuff is based on asking the patient!!!! The absence of tests means that research trying to identify characteristics such as statistically significant measurable changes from normal populations (for example, mycoplasma infections, coagupathy etc is definitely valid --- and treatment that lowers these changes are 'potential treatment' -- they may be dealing with co-morbid items which in theory should impact this disorder.

However, treatment whose results is based on 'asking the patient' without establish use of lab work should be eliminated from this entry. If there is agreement, then I will add that clarification to the research as the criteria used in this article (transparency). It will mean that all of the CBT stuff will likely disappear (I will recheck the study to see if there is any lab work backing up the assertions in the articles).

Does that sound like a rational plan? It is actually a very good point that we need to apply uniformly Lassesen (talk) 14:20, 7 January 2009 (UTC)

I disagree with Lassesen about the parity between survey data and the papers on CBT - they are different things and if the CBT papers meet WP:MEDRS then that is fine. Surveys are problematic, and there was nothing hasty about removing an unnamed and unreferenced "survey" - it was entirely correct. Surveys are very hard to judge and interpret, so we should leave it to secondary or tertiary sources that meet WP:MEDRS. Surveys are very hard to do well and without bias, and very often they are simply done to get the result wanted (such as the recent "homeopathy works" survey). Without sourcing the survey data should not be included, and with sourcing it should be discussed here first. If people could stay civil and stop questioning the motives of other editors we might make some progress. Verbal chat 14:42, 7 January 2009 (UTC)

The deleted survey info comes appears to come from "A report of the CFS/ME working group" for the CMO. [80]

"4.4.2.2 Cognitive behavioural therapy. Patient reports - These suggest wide variation in both the practice of and the individual response to cognitive behavioural therapy. Although there is general acceptance that the therapy can help some patients, some comments point to difficulties with inflexibility in the therapists' views or in the treatment plans. Some patients are reluctant to receive what they perceive to be a ""psychological treatment"" for a ""physical"" disorder. A persistent concern is that cognitive behavioural therapy is viewed by some clinicians as the sole proven treatment strategy. A further observation was that services are often unavailable locally or available only after a long wait.

"In one patient-group survey, only 7% of respondents found the therapy ""helpful"", compared with 26% who believed it made them ""worse"". The remaining 67% reported ""no change"" (see also Annex 3, section 3). Harm was suggested by the report to occur if activity scheduling was too rigid, if the therapist displayed scepticism of the patient's views or experiences, or if they implied that their illness was ""all in the mind"". Patient reports indicate that patients find a holistic, practical, occupational therapy based service to be an acceptable approach. While mental health workers and therapists from other disciplines may also offer acceptable services, it has been suggested that therapists accustomed to working solely with psychiatric populations may need additional training and experience to engage and work appropriately with patients suffering from CFS/ME.

"Annex 3.3: Other patient evidence [81] The Working Group examined patient reports, surveys, and other material submitted by various organisations, institutions, and interested parties. These made a positive impact on the Working Group process of allowing us to learn of the wide variety of clinical experience. Key data have been assessed and synthesised into the report where possible. For example, a survey by Action for ME of more than 2000 individuals who were or had been severely affected by CFS/ME provided a useful indicator of treatment effectiveness in this group. Although the results cannot necessarily be generalised beyond this group, the data clearly indicate that the York review results do not reflect the full spectrum of patients' experience. We have utilised, by way of example, the results of one study, but other studies from patient groups have shown similar findings." [Table follows].

Sam Weller (talk) 20:08, 7 January 2009 (UTC)

I think it would be useful to put at least some of this info into the CBT section of the treatment sub-article. There is a lot of very insightful discussion regarding patients' perceptions about CBT, the way it is approached, etc., basically covering a lot of the discussions/arguments that we have been having on this page regarding CBT. --sciencewatcher (talk) 00:26, 8 January 2009 (UTC)

Yes subarticle would be OK, we need to be careful about how it gets presented but a UK government source is OK. RetroS1mone talk 00:34, 8 January 2009 (UTC)