Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 8

This is an archive of past discussions about Myalgic encephalomyelitis. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page.

Archive 5

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Archiving

Latest comment: 16 years ago4 comments2 people in discussion

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

Latest comment: 15 years ago21 comments6 people in discussion

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?

Latest comment: 16 years ago33 comments6 people in discussion

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

Latest comment: 16 years ago10 comments5 people in discussion

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

Latest comment: 16 years ago12 comments3 people in discussion

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

Latest comment: 16 years ago8 comments3 people in discussion

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

Latest comment: 16 years ago13 comments6 people in discussion

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)

ME as a separate condition from CFS

Latest comment: 16 years ago19 comments3 people in discussion

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

Latest comment: 16 years ago62 comments8 people in discussion

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

Generalised or localised muscle fatigue after minimal exercise with prolonged recovery time.
Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.
Variable involvement of cardiac and other bodily systems.
An extended relapsing course with a tendency to chronicity.
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:

they describe the same condition (hence the frequent use of ME/CFS or CFS/ME, or using them interchangeably), yet
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)

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Combined sections

Latest comment: 16 years ago1 comment1 person in discussion

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

Latest comment: 16 years ago6 comments4 people in discussion

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

Latest comment: 16 years ago11 comments5 people in discussion

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

Latest comment: 16 years ago15 comments8 people in discussion

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),

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.

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.

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.

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.

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.

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).

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

Not sure what's meant by usage here.

What medical test is widely accepted as diagnostic?

None yet widely

What aspects of the disorder are not controversial?

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

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)

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.
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.
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?
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.
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.
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.
Idiosyncratic presentation of symptoms - this seems to be true [30], I'll reference it.
I'll check the reference.
What medical test is widely accepted as diagnostic?
Bicycle/tredmill tests, and neuropsychological tests.
What aspects of the disorder are not controversial?
E.g. that it can be severely debilitating.
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?

Latest comment: 16 years ago21 comments7 people in discussion

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^[1]	X	X	X		Sweet tooth	Most common criteria
CDC definition^[2]	X		X		Hairy eyeballs	Common in the US and Mexico
Dunham et al.^[3]	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.^[4]^[5]^[6]^[7]" 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

Latest comment: 16 years ago5 comments3 people in discussion

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

Latest comment: 16 years ago3 comments2 people in discussion

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

Latest comment: 15 years ago2 comments1 person in 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

Latest comment: 15 years ago15 comments4 people in discussion

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:

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..."

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."

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?

Latest comment: 15 years ago10 comments6 people in discussion

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

Latest comment: 15 years ago11 comments5 people in discussion

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)

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