Talk:Controversies related to ME/CFS/Archive 1

Archive 1

Controversies at Creation

problematic sections:

I'm not too sure about the whole (sub)article. Is this about the (mis)classification only? In that case say so. or is it about the psychiatric/physical causation question in general, in which case the classification example is a little narrow for the purpose.

And more specifically:

"This result could, however, not be replicated in a population-based study, where fatigue in psychiatric disorders, but not in CFS, proved to be a match.[3]"

this is an overly concise summary. Did the study show NO correlation at all? Is this the last word, accepted by everyone? The ref is 2005, and somehow I doubt that the discussion is quite finished yet. It's worded here to give as the definitive conclusion that psychological factors are NOT significant in ME/CFS. I don't think everyone actually agrees on that one.

"A common misconception is that ME was initially classified at G93.3 due to political activist pressure; however this is not true. The WHO recognised ME in 1965 at a time it was well established with many supporting papers and inclusion medical textbooks. The WHO classified ME in 1969, some years before the first patient support/activist groups were formed. Again in 1992 the WHO maintained their rubric with no need of patient pressure; the only interference has of late come from psychiatric disgruntlement and the only propaganda a distortion of these facts." (last paragraph)

this is an OR conclusion. either find someone who said it, or just give the dates in the text.

Please note that I have no personal opinion at all about the actual controversy. DGG (talk) 04:02, 13 April 2008 (UTC)

Agree, the article needs a summary of scope. I simply removed the last paragraph in article as OR. Removed paragraph should be rewritten at some point with NPOV and sources. Will try to work on other items as time permits and also post to Chronic fatigue syndrome talk for editors to put this article on to-do list. Thanks. Ward20 (talk) 04:42, 13 April 2008 (UTC)

At the moment this article is simply the existing text from the main article, which is far too narrow in scope. Paradoxically, the summary we created for this contains far more useful information as a result, and as such this article needs a very serious overhaul. Please feel more than free to dive in! -- Strangelv (talk) 12:48, 13 April 2008 (UTC)

Is there anything from this dispute that has not been resolved? -- Strangelv (talk) 20:23, 19 April 2008 (UTC)

I believe all the points above have been addressed. Ward20 (talk) 21:09, 19 April 2008 (UTC)

Removed the tag under the belief it's resolved. -- Strangelv (talk) 22:31, 19 April 2008 (UTC)

Lead Para

Added lead para from CFS talk page as intro. If anyone objects by all means remove or modify it Jagra (talk) 05:35, 8 June 2008 (UTC)

Depression in CFS

Perhaps we need a heading on the controversial place of depression in CFS, I have posted some material below for consideration,

The role of depression in ME/CFS has been extensively researched, and there is still controversy whether depression is a cause or a comorbid effect of CFS. One of the great difficulties has been that different research definitions are used to conduct CFS studies that include or exclude patient populations with clinical depression.

The 1994 Centers for Disease Control and Prevention Fukuda scientific research criteria specifies, "All other known causes of chronic fatigue must have been ruled out, specifically clinical depression" But, a study published in 2002 found that physicians have a tendency to underrecognize psychiatric illness, especially when assessing patients whose chronic fatigue is fully explainable by a psychiatric disorder and who may be misdiagnosed with CFS.

A review published in Dialogues Clin Neurosci. in 2006 says depression can occur in association with virtually all the other psychiatric and physical diagnoses. Somatic presentations test the conventional distinction between physical and mental disorder and are a perennial source of controversy.

A meta-analysis published in Psychosom Med. in 2003 on the association of medically unexplained physical symptoms, anxiety, and depression. Two hundred forty-four studies were included on the basis of consensus ratings. It concluded that meta-analytic integration confirmed the four functional somatic syndromes (IBS, NUD, FM, CFS) are related to (but not fully dependent on) depression and anxiety. Furthermore in view of the relative independence from depression and anxiety, classification and treatment of these symptoms and syndromes as "common mental disorders" does not seem fully appropriate.

---

Jagra (talk) 01:17, 19 April 2008 (UTC)

Added more material but it needs a lot of work to integrate it properly. Ward20 (talk) 20:05, 19 April 2008 (UTC)

One will find similar correlations with depression for probably all chronic physical disorders. It's a potential consequence, not a cause. Guido den Broeder (talk) 19:36, 5 August 2008 (UTC)

Removed this from the article

[3] I think Guido meant to put this on the talk page? --CrohnieGal^Talk 15:15, 29 November 2008 (UTC)

Thanks, Crohnie. Apologies, somehow my sig ended up in there. Good to see that you're following our progress. Guido den Broeder (talk, visit) 16:09, 29 November 2008 (UTC)

Expand tag

I'm not sure why the article still has and expand tag. It already covers a lot of ground, IMHO. Any opinions? Guido den Broeder (talk, visit) 12:25, 30 November 2008 (UTC)

I removed the top, but placed a section expand tag in the research priorities section - it's only 2 lines. WLU (t) (c) ^{(rules - simple rules)} 15:28, 30 November 2008 (UTC)

Research funding controversy

Sam Weller asked why I take out some sentences from Research priorites conteroversy

From patient perspective, research funding is divided between psychologizers and physiological studies, a subarticle like this is where to put this patient perspective. This can also be where to put the GAO study about mis-appropriated funds bc that is a funding conteroversy.

A research group that does interferon research, that is not a funding priority conteroversy that is what one group does with their money, a study fund by CFIDS organization is not a funding conteroversy it is a funding priority for a private organization. I think the editor may be thought this was for funding priority not funding prioirity disputes?? RetroS1mone talk 13:28, 6 January 2009 (UTC)

I stand corrected. RetroS1mone is right. Given this, perhaps the expand tag should be replaced? Thegoalistruth (talk) 17:11, 6 January 2009 (UTC)

Thanks i put it back. RetroS1mone talk 05:47, 8 January 2009 (UTC)

Recent edit

I've done a rather quick read-through and cleanup of the page, in this edit. The biggest difference is obviously the removal of the ICD classification (reproduced below). The first paragraph was unsourced - a source is required per WP:PROVEIT now that I've removed it, but mostly because I think a source would hugely improve the section. It's an interesting point, but there's no context to it right now, and the use of the term "activist" is possibly biasing. Medical activists? Patient activists? It was "corrected"? Who is Andre L'Hours? Has the correction been made?

The second paragraph is also unsourced, it's about statements by British nobility - I don't know if they have sufficient qualifications or expertise to include their letters, which are inherently self-published. The House of Lords is not a medical decision body either, and the urls don't actually link to a letter. Is it accurate to describe a professor as an "activist", particularly when they are a civil servant in the department of health, when there is again no citation? If we're attributing words to an individual, at the very least we should have some sort of citation to a reliable source that justifies it. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:41, 26 May 2009 (UTC)

In 2001, King's College, London, a Collaborating Center of the WHO, published a "Guide to Mental Health in Primary Care" in which ME/CFS was also classified as a mental illness in ICD-10, under the code F48.0. The guide was also published on the website of the Collaborating Center, King's College. In response to activist protests to the Collaborating Center and the WHO's headquarters, the web page was revised and a correction to the guide promised. Andre L'Hours, Technical Officer at the WHO headquarters in Geneva, stated that it was "unacceptable" to classify one disorder in two places in the ICD-10.

The Countess of Mar brought the matter to the attention of the House of Lords on January 22, 2004, citing the position of the WHO of how the illness is classified (G93.3), and that WHO intended no change. Subsequently, Lord Warner wrote stating The London WHO Collaborating Center had ceded to WHO authority and would ensure future editions of the Guide were corrected. In response to an activist, Professor Anthony Sheehan, Professor of Care Services at the Department on Health, on behalf of Sir Liam Donaldson, then Medical Chief Officer, replied "The WHO; the WHO Collaborating Centre; and the Department of Health have now agreed a position on the classification of CFS/ME. It has been agreed that the second edition of the WHO Guide to Mental Health and neurology in primary care will have only one ICD-10 code for CFS. This is G93.3. [...] I can only say that the Department of Health has no plans to seek a reclassification of CFS within ICD-10."

Comment at RSN

Please note this section of the reliable sources noticeboard, in particular the comment by Eubulides, who was essentially singlehandedly responsible for returning autism to featured status. I have huge amounts of respect for this editor, so it is worth taking his comments into consideration. WLU (t) (c) Wikipedia's rules:^simple/_complex 07:24, 27 May 2009 (UTC)

Use of sources

Advice is needed on edit warring [4] about sources.

Can a primary source, a survey of a small number CFS patients prove that "some specialists and the majority of patients" want the name CFS change? I do not know reliable source, majority from all CFS patients in world want a name change, and this is a MEDRS article.

Should non conteroversial information from an article by an expert be deleted with the whole reference? "pointing to numerous high-quality studies concluding that CFS can be effectively managed by psychotherapy and exercise" is a non conteroversial statement, a group of tendentious editors is deleting it.

I do not say my behavior is great on these articles but I am the only person trying on stopping a group of patients or I suspect COI editors deleting reliable sources like that one and adding their personal opinion of primary sources bc they believe psychology and psychiatry are not a part of CFS but most of medical doctors think it can be. RetroS1mone talk 17:50, 6 June 2009 (UTC)

Retro, I think if you worked with other editors you would get further. And you have done the same things you accuse others of doing, e.g. using a primary source from psychosomatic something and saying in your edit summary it is a review from the Lancet, and then saying your letter to the editor is a reliable source while Hooper's article in the JCP is not reliable. I agree Hooper is not reliable for medical stuff, but he's as good as your letter to the editor for comments. And this edit war over 1997 vs 2001 for the Showalter book is just plain ridiculous!

The problem seems to be that you think of this as a war between pro and anti psychiatric people, when that isn't really the case. Most people, including me, are simply trying to present the evidence. Some people are biased by their experiences, but now that Guido has gone I think most of the editors here are pretty good at presenting a NPOV. And you have to remember that even in the medical community there is huge disagreement, and the article should (and does) reflect that. If you go accusing people of stuff all the time, it simply makes them less likely to listen to your point of view. --sciencewatcher (talk) 18:03, 6 June 2009 (UTC)

Ok am i confused?? In Pathophysiology the Prins review information is deleted and they add a thing about "most patient" want a new name, but only source is a primary survey. I agree on primary sources are not best to use, i can find much better sources then a letter to editor, I forgot that was a letter i am sorry. Thank you for describing it to me and the warning. RetroS1mone talk 18:11, 6 June 2009 (UTC)

Yes, your edit for neuroticism in the Pathophysiology article used the Lancet review, but this edit to the main CFS article used Psychother Psychosom and your edit summary incorrectly says "Pls do not delete from Reliable source, Lancet review". Oh, and I'm not saying your letter to the editor isn't a reliable source. It may suffice as you're only giving a comment, although you might need to make it more clear that it is just a letter to the editor. --sciencewatcher (talk) 18:28, 6 June 2009 (UTC)

Honestly, I think the 1997 vs. 2001 thing is mostly getting caught up in the other reversions. I do think the one that introduces it as a 1997 book and comments on the 2001 intro later on is the better wording, as I said in my revert description, but the specific wording is largely irrelevant, as long as it's clear.

I agree that the main problem here is that Retro is not trying to work with other editors. Reversions are made with little or no talk page discussion, edits from questionable sources are included, etc. If that style of unilateral editing can be cleared up, I think the disputes about sources and so forth will resolve themselves in a more suitable fashion over time. --Rob (talk) 19:36, 6 June 2009 (UTC)

RetroS1mone's reversion edit summary was "my concern is not answered in summary or on talk page, the tag team of Rob Tek Ward20 Sam Weller just reverts all my edits w/o real discussion". But looking at the edit history (here [5] early June 2009), Ward20 and Tekaphor have not made any such reverts, or any recent/relevant edits whatsoever of any kind at all on this sub-page. Please stop the lies. - Tekaphor (TALK) 12:56, 7 June 2009 (UTC)

Perhaps the L Jason study needs to have the qualifier "A survey suggests...". - Tekaphor (TALK) 12:58, 7 June 2009 (UTC)

And the "numerous high-quality studies concluding that CFS can be effectively managed by psychotherapy and exercise" should probably be put in quotes, as it seems to be a letter to the editor. I don't have access to the text anyway, so I can't see what it actually says. --sciencewatcher (talk) 15:32, 7 June 2009 (UTC)

It appears like it's mostly or all original research anyway transcript here. I used wikiblame to see who edited it and it appears to me that RetroS1mone added it here. Would someone kindly independently corroborate the material to the source to verify the OR, and also the instance of who added the material? Honestly, this is very disturbing to me. And I am going to stop there until someone double checks me. Ward20 (talk) 04:45, 8 June 2009 (UTC)

[outdent] I agree with Ward20's analysis. The article was stable at 26 May. It was reverted twice on 4 June by RetroS1mone, whose second revert was stated to be about Hooper, but the Vanhoudenhove OR was sneaked in at the same time. I reverted those and subsequent POV edits on 4 June, always back to WLU's 26 May version. So it looks like I'm the tag team. Sam Weller (talk) 06:08, 8 June 2009 (UTC)

That's the same transcript I came across back in February when we had a mini-dispute, and to be honest, I see nothing even remotely suggesting "numerous high-quality studies" in the letter, even ignoring for the moment that it's only a letter to the editor. One way or the other, it appears that inaccurate information is being added to an article with a citation that doesn't match the information being inserted. While it could be considered merely an error, this would be the second apparent "error" on behalf of RetroS1mone that we've picked up on (the first being the 589 figure in the main CFS article a few days ago). "Very disturbing" is an accurate description, I think. --Rob (talk) 06:44, 8 June 2009 (UTC)

Summary of edit history surrounding this discussion

The following is a summary of the major edits surrounding the "numerous high-quality studies" text that I was able to find. Given the overwhelming number of edits and my reliance on WikiBlame (thank you Ward20!), there may be some innacuracies here, but this will perhaps save other editors time in trying to figure out what all happened over time. Please feel free to add to or modify these links (within reason, of course) if there is additional information you feel relevant, or information listed that is incorrect.

• 2005-Sep-11: Initial text added by Feyandstrange.
• (minor modifications over time)
• 2008-Jan-15: Initial citation added by Guido den Broeder. Given that the letter to the editor was written in 2006, it is obviously impossible that this was the correct source.
• 2008-Apr-14: Moved from main CFS article to Controversies article as part of a larger edit.
• 2008-Oct-26: "Numerous high-quality studies" phrasing introduced by RetroS1mone.
• 2009-Feb-28: "Numerous high-quality studies" phrasing removed by me, along with the citation.
• 2009-Jun-04: Edit warring begins. While removed by multiple editors (myself and Sam Weller), in all cases the unsourced phrasing and impossible reference are reinserted by RetroS1mone. [6][7][8][9][10]

--Rob (talk) 07:58, 8 June 2009 (UTC)

OK, people, i can totally work with you, pls then explain my confusing to me like Sciencewatcher and i am trying to help!! I do not want ANY letter to editor in MEDRS article, that is not MEDRS, when i was the criminal with the letter i am very sorry it was stupid and wrong, i had the worng memory and i thought it was the Lancet. Pls let a administrator delete it, thx. RetroS1mone talk 14:28, 8 June 2009 (UTC)

O and that is my second mistake?? I have 2300 edits in past year, i learned alot about Morgellons and Lyme disease and CFS and more topics, i made alot more then two mistakes, people!! On Wiki, you check other peoples mistakes and you can correct when they are wrong, it is great system!! RetroS1mone talk 14:34, 8 June 2009 (UTC)

Making mistakes is fine as long as you acknowledge and fix them, which you appear to be doing (and that is good). I think what people have a problem with is the edit warring and your attitude to some editors, accusing people of various things, etc. Just relax a bit more and also try to look at things from other people's perspective, and things will work out much better. I think you really can do good work on the CFS articles if you can learn to work better with other editors. --sciencewatcher (talk) 15:02, 8 June 2009 (UTC)

Thx SW i will try. RetroS1mone talk 15:04, 8 June 2009 (UTC)

Etiology, diagnosis and treatment vs Diagnosis

Why does Diagnosis have 2 sections headings?

My main concern is about weighting and neutrality of the second section, where Hooper and Showalter are contrasted. Hooper is dissed as an 'activist' (and there has been a related attempt to delete his article), while Showalter is lauded as an 'Academic feminist.' The unequal rhetoric obscures Hooper's position as an emeritus professor of medicinal biochemistry, and Showalter's lack of training or qualifications in any aspect of medicine or psychiatry. And they can both be described as 'activists' - Showalter is an activist for a highly controversial somatization theory.

"She cites research that chronic fatigue syndrome is primarily a condition of white, affluent women." Surely this needs a citation, since it has been undermined by contradictory research.

"CFS patients responded to her ideas with hate mail and death threats." How do we know CFS patients threatened herlife? Her book covered Gulf War Syndrome and other illnesses as well. Has she provided an analysis of her hate mail according to medical condition?

And there is no mention of opposition to her ideas within the health profession, unlike here [11] Sam Weller (talk) 10:04, 23 May 2009 (UTC)

Agree with you Sam, there are problems there. First, I would say the WP:MEDRS medical diagnostic material should be in the first section and the philosophical/political arguments in the second section. Showalter's book doesn't meet medrefs so for peer rebuttal to her views I would think that patient views published in reliable sources could be used. Her book preface does state CFS patients threatened her [12]. You rightly point out how differently Hooper's views are treated vs Showalter's. Ward20 (talk) 01:54, 24 May 2009 (UTC)

Thanks Ward20, much less biased. But why are Hooper and Showalter paired like this? Isn't the professional argument between Hooper (biomedical explanations for cfs, gws, etc) and Wessely (cfs, gws, ibs under one somatoform umbrella)? Then the lay argument as you suggest between Showalter and patient views. Sam Weller (talk) 10:19, 25 May 2009 (UTC)

Yea, I did the easy part. I agree the arguments need to be better organized and framed. The problem as I see it is that Showalter's book is highly cited[13], though the scientific evidence of her conclusions tends to be lacking. The reviews that are comprehensive seem to like her scholarly writing, but criticise her in regards to GWS and CFS.[14][15]. Reviews are all over the map on this book so it is going to be hard to write a good NPOV section. If we could find a good WP:MEDRS review in relation to the book's CFS material it might be best. Ward20 (talk) 23:24, 25 May 2009 (UTC)

Surely there's a better citation for CFS being seen as psychosomatic than Showalter's book? I'd rather use something newer and more credible (and doesn't result in a sentence that has "since disproven" in the middle, particularly since that particular claim isn't sourced). If the book is that criticized, it might be better to say something along the lines of "CFS has been cited as an example of a modern hysteria (Showalter)" or something similar, where it's a single, short mention rather than even a short paragraph. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:03, 26 May 2009 (UTC)

Well as Sam points out, currently there are two sections that discuss similar issues without much organization. I thought a better solution would be to move the medrs arguements into Etiology, diagnosis and treatment. I agree it should be based on newer and credible sources as especially the 1993 letter is rather outdated. We might rename the Diagnosis section to something that more accurately summarizes the divide between the camps in the press and non-medrs media like Showalter's book. That way we wouldn't be giving non-medrs media parity with the medrs sources. It would be nice if the issue would go away but unfortunately it's real. Like WLU I would rather not see a long paragraph of mashed up content and personally I'm in no great rush about it. Ward20 (talk) 02:49, 26 May 2009 (UTC)

I've got the Showalter book, and I've just read through the CFS section. I'll see if I can improve it a bit. --sciencewatcher (talk) 02:54, 26 May 2009 (UTC)

It's there as a google books link too in the refs, with a preview of the CFS chapter. I see Showalter's arguments as more of a social phenomenon, not really connected to medicine at all. Perhaps in a "perception" section, that discusses the yuppie-flu angle too? Since this is a page of controversies, it should cover a lot more than just medicine (though there's a lot of medical controversies) - public perception, patient/advocacy versus medical/research perceptions, stuff like that (having not read through the page though - it may already discuss it, in which case my bad). WLU (t) (c) Wikipedia's rules:^simple/_complex 11:09, 26 May 2009 (UTC)

[unindent]Showalter certainly isn't a medical expert - she describes herself as a historian of psychiatry. But her book does do a good job of looking into the controversy surrounding CFS and its history. Anyway, feel free to change/improve it. --sciencewatcher (talk) 15:12, 26 May 2009 (UTC)

If I'm feeling industrious later, I'll have a look. At least you took out the "since discredited" WLU (t) (c) Wikipedia's rules:^simple/_complex 15:16, 26 May 2009 (UTC)

Yes, that bit about it mainly affecting rich white chiks only appeared once in the book where she quoted a study. Yes, it does seem to have been discredited, but that is no reason for knocking the entire book. --sciencewatcher (talk) 19:14, 26 May 2009 (UTC)

Going back to Sam Weller's original statement, the second Diagnosis section really should be renamed. It's not about diagnosis. Ward20 (talk) 00:47, 16 June 2009 (UTC)

I just renamed it to "Perception", which I think is a bit closer. If that doesn't seem quite right either, perhaps we should re-group the various statements into other sections and/or new sections so that they're all suitably titled. --Rob (talk) 02:15, 16 June 2009 (UTC)

Naming

In the naming section, I think it might be worth mentioning why they haven't picked a more descriptive name (as far as I know it's because they haven't figured out the etiology). No-one likes the name, not even doctors, and this strikes me as a controversy :) WLU (t) (c) Wikipedia's rules:^simple/_complex 11:18, 26 May 2009 (UTC)

Agreed. Also, I've made a more radical suggestion here: [16] Current CDC criteria state "Various terms are incorrectly used interchangeably with CFS ... ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." This could not be clearer, and accords with the WHO separation of ME and chronic fatigue. M.E. needs its own article. Sam Weller (talk) 11:38, 26 May 2009 (UTC)

Sam, that point (using that exact reference) was essentially the reason Guido den Broeder was banned from editing the ME/CFS set of articles. My overall objection to it was that it was a course syllabus, when most of the references used the terms interchangeably (even the CDC itself is contradictory on its own site - see myalgic encephalomyelitis in this link). It's possible that a note could be placed indicating the difference, but I would prefer this be verified with a better source. The course page was last modified in December of 2007, it's contradicted by many newer sources that explicitly call them the same thing, and despite some searching I've never managed to find a second reference for the point. At best I would phrase it as "though ME has a separate case definition^{(reference, ideally two!)} most researchers use the terms interchangeably." See here, here, here, here (especially) and here. I don't mean to beat you about the head with this, but it has been discussed at length and it was a source of immense frustration. Finding a single source that supports a single point doesn't mean we should change the page when a lot of other sources contradict it. Also, I believe this is a matter of a case definition rather than separate entities, and therefore would be attached to a single outbreak location. I started initially agnostic on the idea of ME=CFS, but repeatedly I have looked at it, read sources at length, and repeatedly have found that they are treated as the same way. I think the only reason ME is still used is it is far more "sciencey"-sounding (a la Ben Goldacre) than CFS, and CFS is itself a terrible name. Consistently I have though that the solution was to use CFS throughout, but flag ME as a prominent alternative name preferred by a significant number in the lead and in most pages discussing CFS at length.

Apologies for emphasis and tone, it was quite an exasperating and lengthy period of editing and discussion. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:17, 26 May 2009 (UTC)

Where is the reference that the WHO separates ME and CFS? If it's new, I may not have seen it. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:19, 26 May 2009 (UTC)

OK, life is too short to read all the archives. WHO clearly separates ME from fatigue syndrome/neurasthenia. [17]

F48.0 Neurasthenia aka Fatigue syndrome

Excludes:

asthenia NOS ( R53 )

burn-out ( Z73.0 )

malaise and fatigue ( R53 )

postviral fatigue syndrome ( G93.3 )

psychasthenia ( F48.8 )

G93.3 Postviral fatigue syndrome aka Benign myalgic encephalomyelitis

Sam Weller (talk) 13:36, 26 May 2009 (UTC)

If it makes it any easier, I've linked to specific sections. I think the one that best demonstrates my point is here, but there was so much discussion that rewalked the same information again and again, you could probably see each as representative.

I've seen that page before, does the WHO ever use the term "Chronic fatigue syndrome" elsewhere? If not, it suggests that they're just using ME as a synonym, as many groups, researchers, etc. do. What we would really need is an explicit statement saying "the WHO considers CFS and ME to be different". This is "the WHO calls CFS ME" in my opinion. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:32, 26 May 2009 (UTC)

Thanks for the link. You wrote in table 2:

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. [my emphasis] This link alone is not really sufficient to state anything about CFS. - WLU

But as I posted above, F48.0 (neurasthenia = fatigue syndrome) explicitly excludes G93.3 (PVFS = BME). BME is the original name (Ramsay?) for ME. F48.0 and G93.3 are separate entities in ICD-10. So, I interpret this to mean CFS is not a synonym for ME. Sam Weller (talk) 16:39, 26 May 2009 (UTC)

I see it as, since we are both using interpretation, it is original research and therefore should not be used as justification to change the page. If you can find an explicit discussion of this in a WP:MEDRS, and ideally from the WHO itself, that'd not only clarify things, it would immensely help the page. I find it curious that the WHO would not have any documentation if it was truly controversial. A search turns up little beyond a report that states there's nothing to link CFS with a hepB vaccination. A search for "myalgic encephalomyelitis" turns up a limited number of links, including one that says "myalgic encephalomyelitis (ME), also called chronic fatigue syndrome" - which doesn't help separate them. Anyway, absence of evidence doesn't mean it's not there, but until it's there for our review, I don't think we're justified in steering the pages away from ME=CFS. WLU (t) (c) Wikipedia's rules:^simple/_complex 16:48, 26 May 2009 (UTC)

There are three Volumes to ICD-10. Volume I is the tabular list which Sam pointed to, and has Benign myalgic encephalomyelitis in a subcatagory under Postviral fatigue syndrome in G93.3. Volume 3, the alphabetical Index has more terms than the tabular list and puts chronic fatigue syndrome in G93.3. See History_of_chronic_fatigue_syndrome#ICD-10, and the primary source can be found here on page 528. Ward20 (talk) 20:11, 26 May 2009 (UTC)

Thanks for the link, I don't see the page as being explicit enough to really say much - I think we're still waiting for an explicit discussion. Again, I'm not opposed to a better discussion, but it really needs better sources. WLU (t) (c) Wikipedia's rules:^simple/_complex 21:36, 26 May 2009 (UTC)

ICD-10 v.1 states F48.0 (neurasthenia aka fatigue syndrome) excludes G93.3 (PVFS aka ME). But v.3 lists CFS in G93.3. WP:PVFS [[18]] includes BME as a synonym, but can only link it to encephalomyelitis - presumably because a link to ME would redirect to CFS, which it is stated not to be. The somatization advocates want to move G93.3 to F48.0 or equivalent. And the patients just want to get better. Sam Weller (talk) 22:08, 26 May 2009 (UTC)

So, let me get this straight. According to ICD-10, CFS is a synonym for ME (i.e. both are under G93.3), but "fatigue syndrome" is classified under F48.0, so is different. Is that correct? --sciencewatcher (talk) 22:08, 26 May 2009 (UTC)

Bingo! Sam Weller (talk) 22:12, 26 May 2009 (UTC)

Technically, WHO lists Postviral fatigue syndrome (G93.3) under "other disorders of the brain" (G93). Benign myalgic encephalomyelitis and CFS are also classified as (G93.3). Ward20 (talk) 01:07, 27 May 2009 (UTC)

{outdent} FYI. A report on the work of the CISSD PROJECT 2003-2007 (Conceptual Issues in Somatoform and Similar Disorders) was posted on June 3rd [19]. The anomaly of fatigue syndrome being listed twice in ICD-10, once as somatoform and once as neurological has been noted and is being rectified for the next edition. The main CFS section is PART 2, but I found the whole report enlightening. Sam Weller (talk) 18:37, 7 June 2009 (UTC)

Interesting read. At least now, I understand how CFS can be grouped under the category of somatoform disorders. If there's no requirement for any psychological characteristics, then theoretically, any disease of unknown etiology could be considered a somatoform disorder (although I did note an age requirement of under 30 in one of the definitions, which I thought was rather interesting...I was 36 when CFS started for me, guess I don't qualify for a somatoform disorder <g>). I think the proposed change, that somatoform disorders demonstrate other "positive 'psychological' criteria", will markedly change how CFS and other misunderstood/inadequately understood diseases are defined. The default assumption for patients who don't display any psychological criteria will essentially be changed from "we don't understand what's going on, therefore it's all in your head" to simply "we don't understand what's going on". --Rob (talk) 20:55, 7 June 2009 (UTC)

You might also be interested in an earlier paper by Richard Sykes, "Physical or mental? A perspective on chronic fatigue syndrome" ([20]). As for the CISSD project, it raises important issues but isn't clear to me yet how successful, accurate, or complete it is. - Tekaphor (TALK) 13:56, 10 June 2009 (UTC)

Thx Tek and Sam for the report. I remind Rob, the talk page is not for networking or discussing your personal medical history or accusing doctors of "default" thinking, you are proving your bias, there are alot of blogs and things where you can do that, pls use talk page to help improve article, thx, RetroS1mone talk 21:01, 10 June 2009 (UTC)

You're right, Retro, the page is not for networking. My statements were, however, related to the reference cited and while somewhat "chatty", they do point out some concerns with various viewpoints. This may be something we want to follow up on in order to improve the article. I'm not sure why you're singling me out, however, as all three of us (me, Tek, Sam) have been a little "chatty" in this discussion. But I do thank you for the reminder that it is inappropriate.

As for my bias, I've come right out and said before that I have an inherent bias due to the fact that I have Chronic Fatigue Syndrome. That doesn't mean I can't work on the article, just that I have to be careful when I do to keep my edits neutral. If you look over the history of my edits, I believe you will find that they are all minor grammatical edits or reversions of information inserted against ongoing consensus discussions.

Finally, as to the accusation of accusation, the article talked about how anything medically unexplained with no psychological components automatically fell into somatoform disorders in some classification systems. That's pretty much the definition of "by default". --Rob (talk) 23:03, 10 June 2009 (UTC)

/outdent/ More on CISSD here: [21] Material left out of the "Summary Report" (link above) here: [22] As for the status of CISSD, it appears to be only quasi-official. Sam Weller (talk) 08:44, 17 June 2009 (UTC)

That seems to have been a bit too much for me to absorb today. (After dealing with a kidney stone all night, I'm underslept and having a bad CFS "cognitive impairment" day.) I got that there was a big concern over the redacted/edited bits, and that the head of Dr. Sykes' degree is in linguistic philosophy (which may be a concern, but I would think it would depend on how much research he's done since then into CFS), but that was about as much as I managed to pick up; I couldn't focus well enough to read everything. Were there other things I should've gotten out of that? (Please, use little words for me today! <g>) --Rob (talk) 17:12, 17 June 2009 (UTC)

Hystories : hysterical epidemics and modern media / Elaine Showalter. Published 1997

The 1997 version does not have the hate mail section which is in the preface in the 2001 reprint. So there would be a sourcing issue with that material if only the 2001 date is used. Alternately I believe there are several reliable sources that refer to the hate mail she got. It would be better to source it separately since it would be a second source rather than primary. Ward20 (talk) 19:32, 5 June 2009 (UTC)

I've tried to clarify this. Is it worth mentioning Wessely's contribution to the creation of the book? Sam Weller (talk) 22:04, 5 June 2009 (UTC)

It's not like it's a secret. There might be a problem getting a neutral second source on it. I guess it would depend on if you could find a high qualitiy source. My 2 cents anyway. Ward20 (talk) 22:55, 5 June 2009 (UTC)

How did he contribute? From reading the book, it seems she interviewed Wessely and there are lots of comments from him in the book. Are you saying he actually helped her write the book? --sciencewatcher (talk) 23:20, 5 June 2009 (UTC)

I guess it's more like a mutual admiration society. She named him 14 times in her book and if you search Elaine Showalter and Simon Wessely in google you can see her cites her book dozens of times. There are good sources that say they are fast friends and then not reliable sources that spin about conspiracy theories between the two. We need a good reliable second source to properly explain the relationship. Ward20 (talk) 04:27, 6 June 2009 (UTC)

Oooh a grand conspiracy. May be they are the same person and I am their sock puppet?? Pls stop deleting stuff w/ good sources and adding in your interpretation of Leonard Jason primary finding the majority of all CFS patients in world do not like title. RetroS1mone talk 17:11, 6 June 2009 (UTC)

RetroS1mone, are you directing that at me? If you are, would you please supply diffs to my specific edits you are talking about because I have no idea. Thank you. Ward20 (talk) 01:34, 7 June 2009 (UTC)

After reading Hillary Johnson's speech to a recent Invest in M.E. conference [23], I've been wondering whether her Osler's Web (1996, rev 2006) would be a better comparison with Showalter 1997. Neither author is a scientist or medic, the two books were high-profile, and published close together. Any thoughts? Sam Weller (talk) 20:01, 16 June 2009 (UTC)

What did you have in mind? Johnson's book is less cited so it should probably be shorter than Showalters coverage, but I think it is a good RS to use some material from in this section. Ward20 (talk) 05:15, 17 June 2009 (UTC)

Will reply later.Sam Weller (talk) 10:47, 17 June 2009 (UTC)

Added WP:MEDRS sources about mass hysteria. Ward20 (talk) 07:13, 28 June 2009 (UTC)

Orphaned references in Controversies related to chronic fatigue syndrome

I check pages listed in Category:Pages with incorrect ref formatting to try to fix reference errors. One of the things I do is look for content for orphaned references in wikilinked articles. I have found content for some of Controversies related to chronic fatigue syndrome's orphans, the problem is that I found more than one version. I can't determine which (if any) is correct for this article, so I am asking for a sentient editor to look it over and copy the correct ref content into this article.

Reference named "PMID 10583715":

• From History of chronic fatigue syndrome: Evangard B, Schacterie R.S., Komaroff A. L. (1999). "Chronic fatigue syndrome: new insights and old ignorance". Journal of Internal Medicine. Nov, 246 (5): 455–469. doi:10.1046/j.1365-2796.1999.00513.x. PMID 10583715. Retrieved 2009-06-25.{{cite journal}}: CS1 maint: multiple names: authors list (link)
• From Alternative names for chronic fatigue syndrome: Evangard B, Schacterie R.S., Komaroff A. L. (1999). [www.blackwell-synergy.com/doi/pdf/10.1046/j.1365-2796.1999.00513.x "Chronic fatigue syndrome: new insights and old ignorance"]. Journal of Internal Medicine. Nov, 246 (5): 455–469. doi:10.1046/j.1365-2796.1999.00513.x. PMID 10583715. Retrieved 2008-11-03. {{cite journal}}: Check |url= value (help)CS1 maint: multiple names: authors list (link)

I apologize if any of the above are effectively identical; I am just a simple computer program, so I can't determine whether minor differences are significant or not. AnomieBOT⚡ 07:19, 28 June 2009 (UTC)

I believe this is fixed now. Ward20 (talk) 07:43, 28 June 2009 (UTC)

Organization

I believe there is still a lot of reorganization and removal of duplicate wording to be accomplished. There may be some dis-organization while trying to reorganize in a stepwise fashion. I hope it doesn't cause confusion. Ward20 (talk) 20:22, 22 August 2009 (UTC)

"ME patient groups"

Ward20's change introduced the phrase "ME patient groups" into the lede. It seems a little strange given the title of the article is CFS and suddenly it mentions ME instead. I don't have the full-text of the ref - in the abstract it just seems to talk about CFS, but I'm guessing it talks about "ME patient groups" in the full-text. If so, perhaps it would be better to put that in quotes so it is obvious that we are using those words because that is what the reference uses. --sciencewatcher (talk) 13:34, 23 May 2010 (UTC)

The wording Me patent groups was in the lead from 8 June 2008 to 5 May 2010 when there was a 'flurry' of changes. ME patent groups is a summary of some the article wording ie: "ME also began to be seen increasingly as a disease with virological and immunological associations, and therefore an illness that warranted expert or specialist medical intervention. Along the way, members of the UK public who believe they suffered from ME became opposed to it being referred to as anything else and challenged the medical profession’s right to dictate the name of the illness.", and "In 1995 a report authored by the medical advisor of the most prominent CFS/ME self-help organisation, the ME Association, advised members against graded increases in activity as a form of rehabilitation claiming that it would increase the chance of relapse [11]."

The article reviews in detail the conflict in the UK between patients and groups who wanted the illness to be called ME verses those who preferred CFS. After reading the article a few times I thought that the wording ME patent groups probably did capture the groups accurately. If the wording will be confusing to the average reader then I am certainly open to clarify the wording. I will ask if I can share the article. Ward20 (talk) 19:04, 23 May 2010 (UTC)

The problem was mainly that the term ME was used in the lede before it was described. I just added a sentence to describe it before it is used. --sciencewatcher (talk) 19:56, 23 May 2010 (UTC)

Works for me. Ward20 (talk) 20:00, 23 May 2010 (UTC)

deleted reliable sources

Group of editors that are against verifiable medical opinion psychiatric factors can be role in CFS are deleting things they do not like. "high-quality studies concluding that CFS can be effectively managed by psychotherapy and exercise." and the source was deleted from article, when I revert, it is reverted and reverted by same editors. WHy is it deleted pls. Malcolm Hooper is not a professional expert on CFS, he wrote an opnion on it and he is a "ME" activist in England, he is not a doctor or CFS research expert. Same editors are keeping reverting verifialbe "activist", that is what Hooper is and he is writing on conspiracy of medical professionals. Why they keep deleting that, i want to know pls. Why you are putting reference to a bias organization of activism, pls, cfids.org. Why they are saying the majority of patients, who can say it, may be the majority of patients Leanord Jason did survey on but Jason did not survey the whole world. And my opinion Jason has a bias bc he is a patient and he does seem bias against psychiatric cause and says he got from mono. Pls explain me why these edits, i do not want edit war, i do not want also people bullying me to delete things they do not like. RetroS1mone talk 21:34, 4 June 2009 (UTC)

As a broad response to this, I think if you look over the talk page and the history of your edits and that of the "group of editors" you claim are so biassed, you'll have most of your reasons right there. Certainly the wording changes that WLU has made recently have given this article a more NPOV presentation. Other editors have also added cited sources of information on various topics around CFS. Invariably, anything that disputes or reduces the psychological POV gets reverted by you. The simple fact is that the majority of researchers do not support this POV at this point. Any reasonable examination of CFS sites outside of Wikipedia will show this. Probably one of the best-known of such sites is the CDC. I point you in particular to the last bullet in their Possible Causes section. --Rob (talk) 21:57, 4 June 2009 (UTC)

Thank you Rob I know people hate me here, i need specific answer, not broad that people do not like me. Researchers think psychological can be part of CFS in different ways, i did not say every person says this. They prove psychiatry is not in it, I agree we take it out and delete those sources. Pls do not delete these things now, it is a contentious area, Wikipedia has job, show different verified expert opinoins do not censor the ones a majority from involved and some spa editors do not like. RetroS1mone talk 22:02, 4 June 2009 (UTC)

O and some CFS patients do not have psychiatric disorder, is true. It says some do not have psych disorder diagnosed and it means some do have a psych disorder and some, the CFS could be caused by psych disorder or part caused by it, we do not know that and extant. RetroS1mone talk 22:04, 4 June 2009 (UTC)

You said it exactly: "show different verified expert opinions". It is agreed by everybody except you at this point that the article is currently biassed in favour of a psychological POV. I don't support removing psychological factors from this article at all...but it certainly is overwhelmingly in support of psychological factors at the moment, and your recent attempted addition of a Pop Culture section only exacerbates that further. "It's all in your head" is not an appropriate POV and not supported by the majority of research. In addition, problems have been found with the Prins citation, and as such, it may be considered OR at this point. I haven't looked over the evidence, so I'll leave it to other editors to decide that.

Furthermore, whether people "like" you or not is utterly irrelevant to the fact that at this point, and it concerns me that every time somebody debates a point, you insert "liking" or "disliking" into the argument somewhere, trying to make it seem as though we're more concerned about how we feel than about the facts. If that's your belief, I challenge you to prove it. I believe you've become a POV editor at this point, and you're acting in contravention of agreed courses of action discussed on the Talk Page. If you dislike where the article seems to be going, I suggest you report it as a COI if you feel that strongly about it.

Finally, to address your point about Malcolm Hooper being an activist, I notice that there is no cited reliable source for that statement on his page. So once again, I challenge you to prove that he is an activist. In a quick search on the web, I could find no reference to him being an activist at all. So to turn your own arguments on you, if you can't cite it from a RS, then it doesn't belong in the various CFS articles. --Rob (talk) 22:14, 4 June 2009 (UTC)

As for your most recent point, the word the CDC used wasn't "some", but rather "many". "...many patients with CFS have no psychiatric disorder." --Rob (talk) 22:16, 4 June 2009 (UTC)

It is not a vote Rob, Sam Weller and Ward20 and Tekaphor say Prins has a problem, is OR, Prins is not OR. They can write to Lancet and ask for retraction, but now the Lancet review is MEDRS. Twenty editors can vote it is not a good review, is not important, it is MEDRS. All talk page discussion does not make Prins a nonMEDRS. Twenty editors can say article is biased, it is not important, it is important the article shows medical opinion. Popular culture is not medical opinion, it does not have to be MEDRS. House episode, that is saying, CFS is misunderstood in popular culture still, and it is bc no doctor or research proves it's cause. Malcolm Hooper is not professional CFS expert. You have a source he is, then take out activist. May be we can find a compromise wording?? Imply Hooper is a field expert by writing a journal paper, is misleding.

some or many, still means some patients do have psych disorders, no person knows if or if not they cause CFS or help cause it or make it worse. No person knows. Many many reviews say, behavioral therapy and other psych kinds of treatments are the best treatments for CFS now. Many many reviews say psych can be a factor. Wikipedia has to say it, it does not relavent if twenty editors do not like it. RetroS1mone talk 22:24, 4 June 2009 (UTC)

(outdent) I point you to Wikipedia:Consensus#Level_of_consensus...specifically the part that says "Consensus among a limited group of editors [in this case, one], at one place and time, cannot override community consensus on a wider scale." [emphasis added] Right now, you're one user, with nobody else supporting your POV. All other active editors have discussed the changes and achieved consensus. While it's true that numbers don't count, at this point, I think it has become very clear that you defend one and only one position and are bulk-reverting anything that violates your belief.

Lancet, as I understand it, is not inherently MEDRS. According to WP:MEDRS, it's "high quality". Earlier in that very same section, it quite clearly states that "Although almost all such material will count as a reliable source, not all the material is equally useful." [emphasis added] In this case, it looks like Prins' work may be considered "not useful" and may qualify as an exception to the "almost all" portion.

If you're going to persist in reverting consensus edits and adding material that has been deemed inappropriate, again by consensus, we may want to consider escalating this issue through the various dispute-resolution mechanisms available on Wikipedia. As it stands now, reading over Wikipedia:Tendentious_editing#Characteristics_of_problem_editors, I think a great many of those characteristics apply to the edits and reverts you've been doing to the various CFS articles. I don't say this as an attack, but simply to point out that, as it says in the article, you may have a blind spot on this issue. Take a good look at that list, and I think you'll see what I mean. --Rob (talk) 08:26, 5 June 2009 (UTC)

What a crapstorm. First of all Prins: although the Lancet article by Prins is a review, the article cited for the "success of psychiatric treatment suggests..." statement is PMID 15031590, which is not a review. I don't have access to the full-text of this article, but that statement certainly doesn't appear in the abstract. According to MEDRS "edits that rely on primary sources should only describe the conclusions of the source". Does that statement appear in the conclusions of the full-text of the article?

Regarding the other points: according to Showalter, "the majority of doctors and researchers maintain that CFS is a psychological syndrome". You can't really go by the number of published studies. There are lots of researchers trying to prove that CFS is not psychological and they publish a lot of dubious research. If you look at what the health authorities are saying (CDC in the USA, and the UK NHS), the view is that stress and psychological factors are the most important. While there probably isn't anything saying that Hooper is an activist, if you read his rants disguised as research you'll clearly see that he is. As I've said before, I am baffled as to why the BMJ published his rant. But then I've seen other dubious crap published in the BMJ and the Lancet before. I suppose it is as Rob says: "not all the material is equally useful". Hooper is useful for comments, like we already have, but not as a reliable source on medical issues. Prins is a reliable source, but you just need to adhere to MEDRS when quoting primary sources. Right now the article seems pretty well balanced regarding psychiatric causation. And yes, I do have a conflict of interest: I am a recovered CFS patient. --sciencewatcher (talk) 14:43, 5 June 2009 (UTC)

That is right Rob, "not all the material is equally useful" and MEDRS says to us, when, like when an author is not a professional expert in the field, like Hooper. A review in Lancet with respected professional expert authors is highest quality.

Right again I am one user, I am supporting community consensus says MEDRS is what gets in medical articles not primary research selected and OR interpretation from people that want censor medical consensus CFS can be psych. Thank you SW now I am not alone any more. No I did not recruit SW. RetroS1mone talk 14:55, 5 June 2009 (UTC)

I'm not saying that you're right, RetroS1mone. To be honest I haven't taken a close look at the recent edits, but I think people need to step back and chill out, especially you Retro. This thing just seems to be degenerating into a petty edit war, and Retro's attitude isn't really helping things. And as I said above, even though Prins is a reliable source, you still can't put whatever you like from her studies into the article. You talk about the Lancet review, but the Prins article you're using is not the review, it is a primary source and it is not published in the Lancet, so you can only quote the article's conclusions as per MEDRS. You can't just bandy around the word "Lancet" and automatically get your way. I'm guessing it's a mistake on your part - I notice you put "lancet review" in your edit summary, but if you look at the ref itself it clearly isn't the Lancet. --sciencewatcher (talk) 19:09, 5 June 2009 (UTC)

Sciencewatcher: I'm curious where on the CDC site (or in their literature or whatever) you see that psychological factors are the most important. I haven't come across that, and as I pointed out to RetroS1mone, the Possible Causes section specifically indicats that many CFS patients do not have any psychiatric disorder, and their Possible Causes page (yes, they're two totally different things) makes no mention of psychological or psychiatric causation at all, although physical or emotional stress is mentioned almost as a possible trigger in two sections on the full page. Of course, the CDC has been a mess of mis-directed funds, redefining CFS in ways nobody else has ever used (for which they were highly criticized by both patients and researchers alike) and several other issues, so even though I've used it to support my own point, I'm not actually sure it's the best source of information in any event. :) --Rob (talk) 20:39, 5 June 2009 (UTC)

CDC give stress as a major factor (“It comes from a combination of many factors: genetics, gender, stressors, immune stressors all interact.” - Reeves) while the UK seems to stress psychological factors. --sciencewatcher (talk) 21:08, 5 June 2009 (UTC)

"Stressors" can imply a great deal of things. My "stressor", for example, was most likely undiagnosed Celiac Disease, which is not psychological in any way, shape, or form. From a psychological standpoint, I was at the top of my game when I got CFS, and it was only after that that everything went to hell in a handbasket as a result of the disease. Is psychological stress a possible cause or partial cause for some people? Absolutely! But it is also merely one of many, and not to be over-stressed, pardon the term.

In regards to Hooper, see my comments on his talk page, rather than continuing it here where it's probably less appropriate. --Rob (talk) 21:12, 5 June 2009 (UTC)

"stressors - Physical, chemical, or biological entities that can induce adverse effects on ecosystems or human health" is a common definition in environmental science. 'Stress' on the other hand refers to mental or emotional strain. The UK obsession with psychological factors has of course led to the prolonged conflict mentioned in this series. Sam Weller (talk) 21:57, 5 June 2009 (UTC)

RetroS1mone, please stop the stereotyping and strawmanning. Stop falsely accusing me (and others) of wanting to remove all mention of psychological factors. You're wrong, and I personally believe that a range of research should be presented in its proper context. Also, I never said Prins' was "OR", stop putting words into peoples mouths. You claim that you're "supporting community consensus says MEDRS is what gets in medical articles not primary research selected and OR interpretation from people that want censor medical consensus CFS can be psych." but then you add primary research yourself, censor any sourced statements that are critical of the apparent POV you're bolstering, and accuse people of "OR" when legitimately using the same sources you do. This is essentially the problem some editors are having with you. And on Hooper as an "activist", you say, "May be we can find a compromise wording??". Yes, we can. Advocate is a "compromise" wording, the one you keep reverting. - Tekaphor (TALK) 12:22, 6 June 2009 (UTC)

People that are patients should think like Crohnie, may be I am to bias to edit article. People that are close with "pro organic" researchers should think it to. RetroS1mone talk 17:09, 6 June 2009 (UTC)

Would you kindly explain what you mean by that statement. I'm not a mind-reader, so I don't know how Crohnie thinks.

Also, in regards to the recent reversion edit-war and the supposed lack of explanation, I think Sciencewatcher explained the cause of the problems very well. --Rob (talk) 17:55, 6 June 2009 (UTC)

RetroS1mone, CrohnieGal seems biased enough herself; she objects loudly to the inclusion of Hooper, yet is silent on the Showalter verbosity; at least Hooper is a scientist, qualified in the biological sciences, and has had papers published in the field. And the work coming from Mikovits, Alter, Belch et al is increasingly showing up the "CBT model" of CFS for the farce it is. Pity the UK establishment can't bring themselves to fund the indictment of their politics-based sophistry, so more sufferers will die (while being deemed "lazy fags") before they can be subjected to the benefits of science. Vespadrun (talk) 18:37, 25 September 2010 (UTC)

CE

I changed:

• The Lancet commented that there appears to be "an active campaign to discredit the research"

To:

• A Lancet editorial conjectured that the strong negative response might be due to the dismay over the debilitating illness, "but also from an active campaign to discredit the research."

Based on the reference text:

• "But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research."[24]

Ward20 (talk) 20:07, 27 August 2011 (UTC)

Since when was a medical background required for political statements?

Regarding this addition by IP:94.193.35.68 "Sardar is a political pundit with no medical background." [25] and Sciencewatcher's subsequent wholesale removal of Sardar's comments [26]. Since when is a medical background a requirement for political commentary, and is one Wikipedian's opinion that a statement is a "bunch of utter crap" a valid reason to remove RS content? Note that Sciencewatcher has previously defended the existence of an entire paragraph to Elaine Showalter who has no medical background either and has seemingly made a few dubious claims of her own? - Tekaphor (TALK) 02:07, 21 September 2011 (UTC)

The 'utter crap' I was referring to was the comment that 'Simon Wessely denies the existence of Gulf War Syndrome and ME'. If you want to put it in, go ahead, but we also need to put a few quotes from Wessely where he says the exact opposite. --sciencewatcher (talk) 02:35, 21 September 2011 (UTC)

Depends how you interpret the words. Wessely accepts the symptoms are "real" but denies the existence of GWS as a distinct illness specific to Gulf War service and denies the literal existence of ME as a disease process and has also argued that CFS is more of a generalised functional somatic syndrome heavily overlapping with IBS and FM etc than a specific disorder but that is another issue. So in one interpretation it can be said that Wessely denies GWS and ME, to say so is not "utter crap". Here are some sources, I'm sure there are many more, I only did a quick search to demonstrate the point:

"The current consensus of researchers seems to be that there is no GWS (Wessely, 2001; Lee et al, 2002)." [27] Wessely 2007: "We know that this is not actually a new disease or illness - in other words there is no unique 'Gulf war syndrome' ..." [28] Wessely 1991: "I will argue that ME is simply a belief, the belief that one has an illness called ME." [29] Wessely 1995: "The epidemiology of environmental illness is reminiscent of the difficulties encountered in distinguishing between the epidemiology of myalgic encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an operationally-defined syndrome." [30]

Feel free to provide examples where Wessely says the "exact opposite". - Tekaphor (TALK) 01:05, 22 September 2011 (UTC)

He says ME is "a genuine, serious, debilitating illness". I pretty much agree with you - it's really just a matter of semantics. Wessely believes it is a real illness, but not an organic disease. I think there is a lot of sloppy writing (some by Wessely himself, perhaps) which confuses the issue. As long as we make it clear in the article, I don't have a problem with adding any of this. --sciencewatcher (talk) 01:38, 22 September 2011 (UTC)

References

Sealed CFS/ME Records

For whomever maintains this page, I wanted to suggest information relating to sealed CFS/ME records in the UK: Public records, reference BN 141/1, relating to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, from 1 January 1984 to 31 December 1993, including correspondence with members of the medical profession, held in the National Archives; closed to public access until 2072 (78 years) instead of the usual 30 years. To my understanding, the CFS/ME community is frustrated and angered with this situation, which is percieved by many as further abuse; however, the courts maintain that the records must remain closed to protect privacy. See site <http://www.investinme.org/Article-358%20The%20MRC%20and%20Secret%20Files%20on%20ME.htm> and <http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=6&CATID=8897099&j=1> for further information or of course, google BN 141/1 and related terms. See also petition site <http://www.care2.com/find/petition>, which hosts a number of petitions pertaining to CFS/ME, including one related to BN 141/1. Pillartopost (talk) 18:07, 12 November 2011 (UTC)

Clarity and Intent of this Article

Reading this article, I remain under the strong impression that the arguments against ME are political, anecdotal, uninformed and not based on science or evidence-based medicine.

I have personally observed psychiatric intervention where somatoform disorder is assumed, neurological symptoms (such as tremors, reduced muscle strength, inability to maintain balance, speech impairment, walking into objects) are ignored (literally dismissed with a wave of the hand). Anti-psychotics are then prescribed on the basis of a few minutes consultation where the patient is told they have "bad thoughts that are making them ill" and is not allowed to speak to describe their own condition!

I am also in contact with a local doctor (GP) who is supplying this URL to patients as evidence that ME does not exist (he believes ME/CFS is indistinguishable from depression/bipolar and should be treated as such, despite those patients being highly motivated with no negative thoughts or emotions).

It seems odd that people can come to such radically opposed conclusions from the same article! Paul Coddington (talk) 23:31, 19 May 2016 (UTC)

Missing controversy?

I thought there was an ongoing controversy about whether health insurance corporations and government (social security and benefit) departments have been involved in the definition of CFS as a psychological condition? The reason given being that disability benefits for psychological conditions are typically lower or reduced quicker than for physical ailments. I can't find any reference to it here or in the other articles. Sam Weller (talk) 09:01, 23 August 2009 (UTC)

There was once wording , "According to the opinion of three Belgium authors of a 2007 paper published in Neuroendocrinology Letters, in some countries it appears there is a political agenda to eliminate the scientific view that CFS is a medical disorder. They stated, the official acceptance of the condition would obviously mean the countries' health care systems would provide support for those patients, but if they are considered hypochondriacs, it becomes easier to deny them health care support.[31] It was removed as the main topic of the article is about increased gut permeability but the authors do make the statement in the article which appears to be their own opinion. It was removed here. There were poorly sourced statements removed about denial of benefits. As I recall there were some notable cases of CFS patients being denied long term private disability benefits in the US with the one company being fined a rather large amount that was never in the article. Page with pointers to possible references.[32]Busness Week article.[33] Ward20 (talk) 14:03, 23 August 2009 (UTC)

The role of exercise in risk, persistence and treatment (GET) of the illness deserves mention. I just found a Wessely et al authored study in 2008[34] that contradicts other studies. "Individuals who are physically active as children and young adults are more likely to report a diagnosis of CFS in later life. Premorbid childhood and atopic illness do not seem to convey any increased risk of CFS."..."The observed pattern of continuing to exercise, despite increasing fatigue, may be an important step in the development of CFS. These findings provide considerable evidence for and against a number of hypotheses relating to the etiology of CFS." They even acknowledge patients have been telling physicians about this. Search Google for full text, it's easy to find. Ward20 (talk) 19:23, 23 August 2009 (UTC)

Maes 2009 cites the Harvey paper (PMID 19127706 section "Sustained strenuous exercise and chronic fatigue"). But controversial? Belongs in Path, presumably. Sam Weller (talk) 21:29, 23 August 2009 (UTC)

Started new Political section, drawing on the UK controversy - as this is singled out in the main article. Please edit and add material from elsewhere. Sam Weller (talk) 11:39, 24 August 2009 (UTC)

It looks like this is a problem in New Zealand as well. Patients are being denied benefits and referrals to specialists in some places. It seems that reducing the number of beneficiaries and avoiding expensive medical tests is taking precedent over proper health care. Credit card companies also may be using this to avoid paying out income insurance claims, leaving people in debt. I am looking into this, but it will take some time. Paul Coddington (talk) 23:50, 19 May 2016 (UTC)

Harassment claims

The section on harassment would benefit from being updated to reflect the conclusions of the recent judge-led tribunal (re PACE trials data release Freedom of Information request) about the claims made by the PACE authors and their colleagues during their PACE publication press campaign in 2011. We must not be blind to the fact that these researchers have a clear interest in deflecting criticism of their work by patients. Some patients believe the claims of harassment were made/exaggerated in order to silence PACE critics. The recent tribunal ruling concluded (re PACE researchers), having heard evidence from the PACE authors (and their university spending around £250k on legal defence fees), that the harassment claims were "grossly exaggerated" and the PACE trial authors themselves (specifically Trudie Chalder) could demonstrate only a single case of heckling. Clearly one instance of heckling is not harassment. If the PACE trial authors cannot convince a judge the harassment (of PACE researchers) is as they previously claimed, why would this page reflect that view unopposed? The page as it currently stands is saying that the statements of researchers in the press (with interests, in their research and their favoured treatments & research funding) are a far higher quality source (and the only source of any worth) when compared to the judgement from a formal tribunal. I think this section should reflect both the original claims but also the tribunal's conclusion that the claims re PACE authors were exaggerated. There is now clear evidence for this section to describe these claims as controversial and include the tribunal's conclusions. (declaration: I am an M.E. patient). http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF Kicsinyul (talk) 09:05, 21 August 2016 (UTC)

We need a secondary source for this. By my reading the judgement took the view that one witness's complaints were over-egged, but we need independent commentary to establish the WP:WEIGHT of this and to avoid misrepresenting the ruling. Alexbrn (talk) 09:11, 21 August 2016 (UTC)

The online version of "The i" newspaper (formerly part of the Independent group) has an article on the tribunal judgement that supports the proposed edit by Kicsinyul (talk).This can be considered a reliable secondary source, its editor is Oliver Duff and the reporter is Paul Gallagher.

I suggest the following text at #PACE_trial section and a reference to the judgement under the #Harassment_of_researchers section:-

Judgement in a First-tier Tribunal (20-22 April 2016) where PACE trial researchers had the chance to present evidence use expert witnesses and be cross examined stated "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder". Judgement in this case ordered the release of the PACE trial anonymised data under the Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial". Approximately £200,000 was spent on legal fees for this appeal by the appellant to try to prevent the release of the anonymised data.. The appellant Queen Mary University London issued a press statement stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community." C7762 (talk) 07:00, 23 August 2016 (UTC)

References

Great! Just a brief mention from the secondary source would be due. The data anonymisation aspects should be covered from that source too (which seems to feature more). Alexbrn (talk) 07:28, 23 August 2016 (UTC)

Thanks for your input Alexbrn, please find below my final draft:-

Judgement in a First-tier Tribunal (20-22 April 2016) ordered the release of the PACE trial anonymised data under the Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial"..The Tribunal rejected the appellant Queen Mary University London claims that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college.. The tribunal found by a majority that the data “has been anonymised to the extent that the risk of identification is remote.”. PACE trial Researchers had the chance to present evidence use expert witnesses and be cross examined also argued that their was extremist activists in the CFS community, the Tribunal judged "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder". Queen Mary University London issued a press statement stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community.". Alem Matthees the second respondent in the case is quoted as saying "This case ended up costing me greatly in time, energy, and health (currently bedridden) … but false or misleading claims of recovery or remission from debilitating illness simply have no place in the scientific literature.”

I think on this page it is appropriate under Controversies_related_to_chronic_fatigue_syndrome#PACE_trial heading , but there is also the heading Controversies_related_to_chronic_fatigue_syndrome#Harassment_of_researchers which warrants a sentence.

I welcome any feedback. I intend to post this edit on this page on the 10 September unless any objections.

Thank you and looking forward to feedback.

References

C7762 (talk) 06:33, 1 September 2016 (UTC)

Some sections still not entirely NPOV

Its never easy to write a section on controversies that is entirely NPOV. On the whole, this page is pretty good. But I spotted two small sections where the editor's POV seems to shine through.

Researcher Harassment:

The section is much improved, but still has a somewhat polemic feel because the context surrounding these harrassment reports has not been accurately described. The phrase "critics who believe that CFS has a physical cause" does not fairly capture the nature of the criticisms that have been raised against the psychosocial approach. This is evident even from a brief read of the other sections on this page.

In WP, we should neither demonstrate disapprobation nor sympathy with actions like harassment, but we should embed them within an appropriate wider context.

I have had a go at editing this.

Contrasting viewpoints:

One paragraph says "A survey published in 2013 found that 89% of patient organisations thought the illness to be physical, compared with 58% of newspaper articles and 24% of medical authorities. The authors of the report think that this might explain the gulf between patients and doctors, and why many patients are reluctant to engage in behavioural treatments.[22]"

I would suggest in a section on controversies, that we just state the figures, and not the author's own speculations as to their explanation. This is because the explanation itself takes a clear side on the very controversies being described (you may not see it immediately, but it implies that patients' reluctance to engage in behavioural treatments is due to their belief in the "physicality" of their illness). It becomes clear elsewhere on the page, that criticisms from patients and patient organisations center on concerns about effectiveness, and in some cases, safety.

We also need here some context - what country, population?

I will have a go at editing that.

Wilshica (talk) 02:22, 8 October 2016 (UTC)wilshica

I think the edits made our article less neutral. If White et al express a view, then we should mention it to reflect the source properly. The changes to the harassment section seemed to contain weasel wording ("many believe") and to skew the POV. I'm not seeing a need for change. Alexbrn (talk) 03:30, 8 October 2016 (UTC)

Update on PACE trial

Please see Talk:Chronic_fatigue_syndrome#update for an update on the results of the PACE trial which has major implications for treatment options. I feel this needs an active debate from all view points as this new information has the potential to impact the text of all the CFS pages. Please input. Thanks C7762 (talk) 09:20, 14 September 2016 (UTC)

---

Yes, I think some edits are required, especially to the page on PACE itself, but also to the paragraph summary under "controversies", where previous, unsuccessful FOI requests are mentioned. I do not think the required changes go beyond this, at present.

--Wilshica (talk) 03:31, 8 October 2016 (UTC)wilshica

External links modified

Hello fellow Wikipedians,

I have just modified 2 external links on Controversies related to chronic fatigue syndrome. Please take a moment to review my edit. If you have any questions, or need the bot to ignore the links, or the page altogether, please visit this simple FaQ for additional information. I made the following changes:

• Added archive https://web.archive.org/web/20110718151623/http://www.iacfsme.org:80/PACETrial/tabid/450/Default.aspx to http://www.iacfsme.org/PACETrial/tabid/450/Default.aspx
• Added archive https://web.archive.org/web/20110625051513/http://cfids.org/pdf/lancet-analysis.pdf to http://www.cfids.org/pdf/lancet-analysis.pdf

When you have finished reviewing my changes, please set the checked parameter below to true or failed to let others know (documentation at {{Sourcecheck}}).

This message was posted before February 2018. After February 2018, "External links modified" talk page sections are no longer generated or monitored by InternetArchiveBot. No special action is required regarding these talk page notices, other than regular verification using the archive tool instructions below. Editors have permission to delete these "External links modified" talk page sections if they want to de-clutter talk pages, but see the RfC before doing mass systematic removals. This message is updated dynamically through the template {{source check}} (last update: 5 June 2024).

• If you have discovered URLs which were erroneously considered dead by the bot, you can report them with this tool.
• If you found an error with any archives or the URLs themselves, you can fix them with this tool.

Cheers.—InternetArchiveBot (Report bug) 07:50, 30 November 2016 (UTC)

Social security/government benefits

In the "Support for Patients" para I have edited the sentence "A 2006 investigation by a group from the Parliament of the United Kingdom found there was not enough support in the UK for CFS patients in terms of access to social security and health care." I have changed 'social security' to 'government benefits' as it is referring to the UK. LyndaLMay (talk) 14:42, 13 July 2018 (UTC)

Researcher harassment

Roxy the dog, you undid my removal of the sentence re criticism in the harassment section. I take it you agree that criticism does not constitute harrasment. So why the undo? Breachdyke (talk) 18:02, 18 July 2018 (UTC)

See my edsum. -Roxy, the dog. barcus 04:25, 19 July 2018 (UTC)

When you say edsum, do you mean this: "Reverted to revision 850088778 by LyndaLMay (talk): ... following on from previous edsum, replace well sourced. ."? This was in the edit history. If so I would be grateful if you could elaborate. Breachdyke (talk) 19:44, 19 July 2018 (UTC)

Ah, sorry, I thought I had previously replaced it, but didn't check properly. I made a mistake and should simply have said "replace well sourced" -Roxy, the dog. barcus 06:20, 20 July 2018 (UTC)

I take it you mean the sentence you put back in is well sourced. That may or may not be so, but the point at issue is that the sentence is about the criticism of researchers, and criticism is not harassment. So why is it in a section of the article entitled "Researcher harassment"? Basically, if you want Wikipedia to document harassment then document harassment, not criticism. Breachdyke (talk) 09:36, 22 July 2018 (UTC)

Hello, sorry if my etiquette here is wrong but it's best i can do as not very well, I hope that wise & wiki-experienced people here can adapt my message to something more appropriate. I would not (of course) advocate e.g. "death threats against researchers" etc but it is a pity that there are apparently no suitable sources that can be quoted to indicate why there might be such strength of feeling. CFS definitions are so vague (& contradictory) as to be unscientific, CFS is most unlikely to be just one type of illness. Prognosis & levels of suffering for people with illnesses like mine often depend very much on how health professionals respond to us because correct management (based on insights gained through careful observation) is critical. Ideas based on psychological models divorced from experience underplay this & can result in what is experienced as widespread abuse, both within healthcare & more generally. For example I have recently experienced abuse from a care worker with a fibromyalgia diagnosis who could not understand that her "chronic fatigue" is different from my "chronic fatigue", that person's condition is clearly helped by regular exercise, my own condition is severely exacerbated by any regular exercise and continual exacerbation is what has led to my condition becoming more serious than it had to be. (My condition is best managed by what might be called 'hybrid pacing' of both mental & physical activity.) Thanks for understanding. I'm not logged in but for clarity I sign as V86.166.105.49 (talk) 15:10, 7 October 2018 (UTC)

Title change

Against my expert advice and earlier consensus, User:WLU has changed the scope of this article by 'boldly' removing ME from the title. As a consequence, controversies of before 1988, of which there are several, can no longer find a place in Wikipedia. Guido den Broeder (talk, visit) 08:16, 11 September 2008 (UTC)

Wikipedia talk:Manual of Style (medicine-related articles)#ME.2FCFS therapies move for previous discussion. The relationship between ME and CFS should be documented on wikipedia, specifically on this page, not reflected in the consensus-determined name used to describe both ME and CFS being ignored and replaced with a meaningless, slashed title. Use your expertise to expand the documentation of the controversies with reliable sources. The scope, for wikipedia, is exactly the same. It's about controversies related to chronic fatigue syndrome, which is functionally equivalent to myalgic encephalomyelitis on wikipedia. Seriously, anyone looking for the controversies is going to have to go to dozens of talk pages rather than this page because of an endless debate over a settled issue. Hell, if there's actually sufficient documentation to support the use or difference between ME and CFS, by expanding the page, you might actually convince other editors. It's certainly not happening on the talk pages. WLU (t) (c) ^{(rules - simple rules)} 12:47, 11 September 2008 (UTC)

The consensus was to use ME/CFS, all the convincing did take place months ago when these pages were set up. My objection has nothing to do with any relationship or controversy discussion, but with the fact that by your action you are blocking relevant information on ME from being entered into Wikipedia. Guido den Broeder (talk, visit) 13:36, 11 September 2008 (UTC)

Add the information to this page, or alternative names for chronic fatigue syndrome as is appropriate. No information is blocked, but your continued grousing on talk pages is taking valuable time away from you adding the actual information to the page. I'm about done here, so continued complaining will be essentially ignored. You know content forks are bad, you know this is the appropriate page. Make your changes, then suggest a re-name. There's your solutions, vas-y. WLU (t) (c) ^{(rules - simple rules)} 13:45, 11 September 2008 (UTC)

I may be wrong, but that doesn't sound like the way Wikipedia is built. You don't see people adding stuff about dogs to the cat article and then propose to change the title into cats and dogs. Normal seems, that we try to reach consensus before making such a major change, forth or back, instead of after. As for the value of my time: let me be the judge of that, and while you may be done here, others may not be. Guido den Broeder (talk, visit) 10:41, 24 November 2008 (UTC)

Consensus on wikipedia has clearly, several times now, been established that the two terms are used synonymously in the mainstream medical establishment. Ergo, CFS is what we use, with a note where appropriate saying ME is the most preferred and prevalent alternative name. WLU (t) (c) ^{(rules - simple rules)} 02:25, 26 November 2008 (UTC)

On the contrary, it has done the opposite several times, and it's still a minority opinion among editors now AFAIK. By the way, I made the chanes, as you suggested, but they were immediately reverted without discussion. [User:Guido den Broeder|Guido den Broeder]] (talk, visit) 01:25, 29 November 2008 (UTC)

Note: ME and CFS are not the same disorder according to WHO. Paul Coddington (talk) 23:40, 19 May 2016 (UTC)

On a practical note, E.G. Dowsett (appears in the references) kindly examined me methodically for over two hours in 1996. I had symptoms way more complex than 'fatigue', she told me I had a clear case of (one type of) typical M.E. and had been helpful to her research. Then a couple of years later came the UK announcement - yes M.E. is a real illness but Drs want to change the name to CFS. - "don't worry" we're told "CFS is the same as M.E." But now looking through pretty much anything that's written here about M.E. I feel marginalised, as though most of you are talking about something completely different. Attending NHS CFS clinics I am now similarly marginalised, and most tragically I now even feel marginalised at patient support groups. Once upon a time I had a typical case of a rare disease, now I have an atypical case of a common condition. M.E. might have been technically wrong but the name CFS has attracted - well, anything unsolved where fatigue is a feature surely? V86.166.105.49 (talk) 20:29, 7 October 2018 (UTC)

Perceptions, Undue weight on Showalter and "lazy fags"

There's still a disproportionate passage on Elaine Showalter, which gives the impression the controversy surrounding her opinions is more important than it is, in the "perceptions" section, which implies a broader insight. Most people (even pwCFS) outside the US will not have heard of her. Also, isn't she a professor of History or something? That would surely be more meaningful to state than "feminist" in this context, though no more reason her claims on CFS could be considered authoritive (you don't have to train to be a feminist). Is "perceptions" too broad for a section when effectively what controversies boil down to?

Why not include the surveyed perceptions of people who actually matter. For example, this:

'If all those come back normal [investigations] well, I don't know what they call them. They probably call them lazy fags... they probably classed as a waste of space... because [pause] people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.'

(It's not that great a paper, the authors are biased, but it is useful for show what many nurses actually think). Vespadrun (talk) 18:22, 25 September 2010 (UTC)

Most nurses appear to think "Patient has just performed task X therefore there is no reason why patient cannot perform task Y"

Patient thinks "why is nurse unable to understand that I'm unable to perform task Y precisely because I've recently performed task X" As a patient myself I find it far easier to explain my problem to an engineer or technician than anybody medical. Nurses I've spoken too only ever understand if they have a close personal friend with the condition. V86.150.252.216 (talk) 12:42, 24 October 2018 (UTC)

--Wilshica (talk) 09:32, 17 October 2015 (UTC)I have a related concern with this section. Its emphasis on the names and views of individual researchers does not appear to me to be in line with WP policy (it may come across to some as researcher promotion). I am not convinced that the opinions of any of the persons named here are sufficiently influential to warrant the coverage and personal recognition they receive here.

Mention of non-objective ideological bias ("feminist") is appropriate, in addition to more conventional credentials IMO.Paul Coddington (talk) 00:05, 20 May 2016 (UTC)

merge?

correct me if i'm wrong, but this article seems a bit niche. would it be worth merging this with the article chronic fatigue syndrome under a separate section just called "controversies". a separate section for "controversies" already exists on that page, so it would not stick out too much. Farleigheditor (talk) 16:36, 13 May 2020 (UTC)

XMRV fiasco

Ward29 Thanks for adding to this. I think it significant to mention that the original study retraction was only agreed by some of the authors, and eventually those who agreed to the retraction stated that there was cross-contamination which is not quite the same as unfounded.. There were prompt queries about one of the figures that the authors did not respond to for some time which lead to possible research waste as replication waste were carried out. It should probably have a bookmark to the Whittemore-Peterson/Mikovits fiasco/theft on the page. The other retracted paper gave a reason I couldn't quite follow the science but "unfounded" also seems the wrong word - incorrect, an error, maybe exaggerates/extrapolated too much? Is it worth mentioning those researchers who immediately threw caution out of the window and jumped on it especially in the media? Although possibly links to news stories could be added to the More information / links part. Amousey (they/them pronouns) (talk) 00:51, 26 June 2020 (UTC)

See Judy Mikovits. -Roxy the elfin dog . wooF 04:20, 26 June 2020 (UTC)

I'm not concerned about "unfounded" being changed, but the study conclusion that patients harbored XMRV in their blood had "no basis in fact". Yes, the blood samples were contaminated by the research methods, but the conclusion that CFS and XMRV were linked in some way was absolutely not valid. The media reaction and patient expectations for the discovery of a pathogen leading to a cure was certainly high. There could be more written about that, but I believe the main controversial part was the false claims. Also, as I recall, the first study to dispute XMRV in patient's blood was even published by the researchers in Britain that study the (bio)psychosocial model. Reasonable they would investigate the claim, as their model would have to be altered if a persistent virus pathogen was found to be the cause of the illness. There were probably complete books written about this episode. Really, how much is necessary for this article? I looked at the XMRV article to see if there was a better accounting of the material. It was discussed, but all jammed into the lead with only one vague sentence in the body. Kind of poorly organized IMO. I haven't looked at the Mikovits article in many years. I suppose there is more there now that she is taking a position against vaccines. Sad, sad, sad. Ward20 (talk) 09:03, 26 June 2020 (UTC)

@Roxy the elfin dog . Thanks. Good call. The section there is fairly complete so I linked it from this section. Ward20 (talk) 18:03, 26 June 2020 (UTC)

I think that any controversy here is largely due to the incompetance of Mikovits, compounded by the howling clamour of CFS patient groups. -Roxy the elfin dog . wooF 18:11, 26 June 2020 (UTC)

@Amousey. I added material to address some of your comments. Feel free to expand or edit important points I may have missed Ward20 (talk) 20:51, 27 June 2020 (UTC)

PACE data release and re-analysis

Why is this missing? Aside from the very long battle with the UK Information Commissioner's Office, multiple re-analysis publications and further scientific criticisms were published - all from 2016 on. PACE got more controversial, not less, and the PACE trial authors even published their own pre-emptive re-analysis. One of the things that came from the data release was that the patients who completed the six minute walk at the end were not able to walk significantly further than at the start - if I remember correctly the distance walked by those at the end was about the average for an 80 year old but they were of working age. I seem to remember the case at the ICO itself become controversial because the expert witness was deemed in some way to be exaggerating or not credible by the judge, something to do with calling patients "sociopathic young men" I think. The issue of harassment (mentioned further down the page) was brought up as a reason not to release the data, but Truddi Chalder was the only one to testify with evidence about that despite the newspaper headings on harassment (links down the page already). Sources to follow Amousey (they/them pronouns) (talk) 19:27, 19 June 2020 (UTC) Sources from previous post above (verification needed)

• Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
• First tier tribunal April 2016 - grossly exaggerated claims of researcher harassment
• "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial".
• QMUL statement
• Tribunal rejected the appellant Queen Mary University London claims that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college.
• Alem Matthees the second respondent in the case is quoted as saying "This case ended up costing me greatly in time, energy, and health (currently bedridden) … but false or misleading claims of recovery or remission from debilitating illness simply have no place in the scientific literature.”

More sources

• Sharpe 2015 re-analysis primary source
• Chalder 2015 re-analysis primary source
• Special issue on the PACE trial
• Edwards 2017
• Wilshire 2017
• "null effect"
• "Our analysis indicates that the researchers have shown significant bias in their accounts of the literature and may also have overstated the effectiveness of the above treatments. "
• Kirke 2017 on the PACE researchers use of a patient survey
• Shepherd calls for re-analysis of results
• Lubert 2017 on logical fallacies
• Vink 2018
• CBT Narrative review "The trial has attracted much criticism (e.g. Goldin, 2016; Kindlon, 2011a). Detractors point to the way in which recovery was operationally defined, such that participants could be classed as ‘recovered’ even if they reported symptom deterioration between trial entry and follow-up... Price et al. also reported that the benefits of CBT are not sustained over the long term and that there is little evidence of improvements in physical function. The PACE trial demonstrated similar results with little improvement in objective tests of physical function and between-group differences not sustained at 2-year follow-up (Chalder et al., 2015; Sharpe et al., 2015). "
• Review by Geragty and Blease 2019
• PMC 5863477 Reanalysis states rates of recovery were consistently low and not significantly different across treatment groups

Harrassment

• "The paper of Blease and Geraghty (2018) critically focuses on the use of militant metaphors in healthcare policy. The paper examines how the activities of POs for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be interpreted in a larger context of contested illness and restricted access to healthcare. These POs are commonly described with militant metaphors, which the authors oppose as a suitable description for their activities. The authors argue that the widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for the expression of fmstration among patients with ME/CFS."

I have now added these Amousey (they/them pronouns) (talk) 23:26, 17 July 2020 (UTC)

References

Cochrane

I think a section on the Cochrane Review controversies is needed - mostly the revision of the exercise for CFS Cochrane Review, which was at one point announced to be withdrawn, then no longer withdrawn, then exercise data for it has been withdrawn, varies updates and altered conclusions and they have now said a full re-write is needed.

The Cochrane CBT for CFS review has been less controversial but very recently was updated to say it's out of date.

Both Cochrane reviews were carried out by the Common Mental Disorders group rather than the neurological diseases group, although the recent controversies have been about whether Cochrane is correctly applying it's own standards or not. The PACE trial data release had an impact - data was shared with Cochrane but denied to other researchers - and the weight of the PACE study radically affected the outcomes, as did the inclusion (or exclusion) or RCTs using the Oxford criteria. Amousey (they/them pronouns) (talk) 23:51, 17 July 2020 (UTC)

• 2002 Cochrane exercise review updated in 2019 "limited relevance to current definitions of ME/CFS"
• Cochrane exercise review history - 8 updates
• 2012 the MEA "No decisions about me" survey of patients who had received GET. - the MEA concluded that GET in its current delivered form should not be recommended as a primary intervention for persons with CFS.
• Cochrane 2008 CBT review
• re-analysis of Cochrane exercise review (2018)
• Controversy over exercise therapy for chronic fatigue syndrome: Key lessons for clinicians and academics: Commentary on… Cochrane Corner - Mitchell 2017
• Withdrawn protocol for exercise data

References