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why it is "poorly understood"

“poorly understood” is in thousands from articles Here is a few, BMJ 2000;320:292-296 JCI 10.1023/A:1020595709352 AIM 1994;154(18):2049-2053 J R Coll Gen Pract v.39(318); Jan 1989 Behaviour Research and Therapy Volume 33, Issue 5, June 1995 AL Komaroff, MD, DS Buchwald, MD - Annual review of medicine, 1998 R Raine, S Carter, T Sensky, N Black - British Medical Journal, 2004 DC Klonoff - Clinical infectious diseases, 1992 SM Lawrie, AJ Pelosi - The British Journal of Psychiatry, 1995 N Afari, D Buchwald - American Journal of Psychiatry, 2003 M Sharpe, D Wilks - BMJ: British Medical Journal, 2002 R Nisenbaum, JF Jones, ER Unger, M Reyes, WC … - Health and Quality of Life Outcomes, 2003 N Kaushik, D Fear, SCM Richards, CR McDermott, EF … - British Medical Journal, 2005 R Cairns, M Hotopf - Occupational Medicine, 2005 DB Cook, PJ O’Connor, G Lange, J Steffener - Neuroimage, 2007

People, OMG!! even the JCFS a nonmedrs says it: BM Carruthers, AK Jain, KL De Meirleir, DL … - Journal of Chronic Fatigue Syndrome, 2003

“inadequately understood” is in 70 articles most from them say it about another condition or a part of a symptom and it is not about CFS in total. I think people are arguing about it bc i am the one that changed back to the earlier consensus?? RetroS1mone talk 21:55, 7 July 2009 (UTC)

RetroS1mone has a point, that the term "poorly understood" appears to be more common in the literature (at least in the PubMed abstracts) than "inadequately understood". - Tekaphor (TALK) 08:55, 9 July 2009 (UTC)
I think people are changing it back to "inadequately" because you—and only you—are repeatedly changing it to "poorly" despite the more recent consensus to use "inadequately" and despite reversions by at least four other editors last time I looked. The reasoning for "inadequately" has been explained in the previous thread, and I believe it's the better term overall, though as I've said previously, I don't think it's a huge deal one way or the other. Online sources that can be viewed by everybody would be preferable here, of course, as few people can verify the sources you've quoted above. --Rob (talk) 21:06, 9 July 2009 (UTC)
Um did you miss what Tek said? And med articles are from MEDRS, it is not MEDRS Rob can find. Just do a google scholar search you will see, thousands "poorly understood" and 70 "inadequately understood". RetroS1mone talk 01:15, 10 July 2009 (UTC)
Yes, I saw what Tek said. Nevertheless, the reasoning has been explained, and the consensus at the time was to use "inadequately" for the reasons we mentioned. You kept reverting it with no reasoning other than "it's been that way for 2 years". While I've left it the way it is for the time being, I think if you want to use "poorly", you should bring it up here on the talk page and cite sources that we can all verify. I find it a little suspicious that any time your views are challenged, you cite medical sources that nobody else can readily verify. --Rob (talk) 01:52, 10 July 2009 (UTC)
I am one of the editors who believes that "inadequately understood" is more preferable and appropriate than "poorly understood" in the introduction. I recognise that "poorly" seems to be more frequently used in articles but that this word, however, is too imprecise as its meaning can range from "inadequately" to "badly" and these meanings are very different. Since it would seem that the meaning implied by "poorly" in most articles usually only means "inadequately" I would suggest that this is the more preferable word for this article. Vague references to uncited sources for "poorly understood" don't really help things. Afterwriting (talk) 12:00, 5 August 2009 (UTC)
Uncited personal opinions help things also less. I gave 16 articles, i can give 100s more, that is not vague, a personal opinion is not MEDRS, the sources are. RetroS1mone talk 12:14, 7 August 2009 (UTC)
You have never, to my knowledge, provided any citation in the article for "poorly understood". All you seem to have done previously is to make vague comments about "sources" in your edit comments. Also, the apparent fact that "poorly understood" is most frequently used in sources does not seem to be, by itself, a convincing reason why we should also use it in this article. Editors are entitled make terminology decisions on various grounds and "poorly understood" does not any have official status that requires its use again here. What is your understanding of "poorly understood" - "inadequately", "bad" or something else? And on what particular policy grounds are you insisting on using it? In the great scheme of things this isn't such a major issue but unless we understand what exactly is meant by "poorly understood" it will continue to be somewhat contentious and considered insufficiently neutral by some editors. Afterwriting (talk) 15:16, 7 August 2009 (UTC)

(outdent) Yet again, we've reverted to "poorly", apparently. While I agree that a large number of sources seem to use this wording, Afterwriting does have a point that "inadequately" better describes the situation. "Insufficiently" might also work, though I think "inadequately" is probably better. Can we either come to a consensus or just agree to disagree and let it drop? If necessary, let's make it a vote and go with the majority. --RobinHood70 (talk) 19:48, 10 August 2009 (UTC)

I explain Afterwriting about sources. I said in this talk before,
“poorly understood” is in thousands from articles, Here is a few,
  • BMJ 2000;320:292-296
  • JCI 10.1023/A:1020595709352
  • AIM 1994;154(18):2049-2053
  • J R Coll Gen Pract v.39(318); Jan 1989
  • Behaviour Research and Therapy Volume 33, Issue 5, June 1995
  • AL Komaroff, MD, DS Buchwald, MD - Annual review of medicine, 1998
  • R Raine, S Carter, T Sensky, N Black - British Medical Journal, 2004
  • DC Klonoff - Clinical infectious diseases, 1992
  • SM Lawrie, AJ Pelosi - The British Journal of Psychiatry, 1995
  • N Afari, D Buchwald - American Journal of Psychiatry, 2003
  • M Sharpe, D Wilks - BMJ: British Medical Journal, 2002
  • R Nisenbaum, JF Jones, ER Unger, M Reyes, WC … - Health and Quality of Life Outcomes, 2003
  • N Kaushik, D Fear, SCM Richards, CR McDermott, EF … - British Medical Journal, 2005
  • R Cairns, M Hotopf - Occupational Medicine, 2005
  • DB Cook, PJ O’Connor, G Lange, J Steffener - Neuroimage, 2007
  • BM Carruthers, AK Jain, KL De Meirleir, DL … - Journal of Chronic Fatigue Syndrome, 2003
OK, i will try again.
In Google Scholar 1920 citations have exact phrases "chronic fatigue syndrome" and "poorly understood"
  • 390 say CFS or its pathophysiology or mechanism or associate fatigue "is poorly understood"
  • 108 say CFS is a "poorly understood condition"
  • 31 say CFS is a "poorly understood illness"
  • 16 say "CFS is a poorly understood disease"
  • 15 say "CFS is a poorly understood syndrome"
In Google Scholar 10 citations have exact phrases "chronic fatigue syndrome" and "inadequately understood" not one from them says CFS itself is inadequate understood, they say things like,
  • WB Farquhar, BE Hunt, JA Taylor, SE Darling … - American Journal of Physiology- Heart and Circulatory …, 2002 - Am Physiological Soc circulating O2 impairment in CFS is "inadequately understood"
  • Y Miwa, N Yajima, F Shiozawa, Y Yoda, R … - Modern Rheumatology, 2002 - Springer., mechanism of rheumatoid arthritis is "inadequately understood"
  • PF Sullivan, P Kovalenko, TP York, CA … - Psychological Medicine, 2003 - Cambridge Univ Press, General fatigue is "inadequately understood"
  • AE Bierman - Wayne L. Rev., 1998 - HeinOnline, Chronic pain is "inadequately understood"
  • Remainder six I do not find full text or i do not find quote.
I add now six MEDRS reviews for citation with CFS and "poorly understood" in there abstract so any person can verify, when it is not enough or when Afterwriting wants full quotes, pls ask, there is alot more. Thx RetroS1mone talk 03:08, 12 August 2009 (UTC)
I did but i do not like how it looks w 6 reference for "poorly understood" in lead, when people verify i do not object, they take out some references, i do not think it needs so much. Thx RetroS1mone talk 03:22, 12 August 2009 (UTC)
I apologize for the extra effort you obviously went to — I had actually meant to remove the {{cn}} tag and mention it here earlier and just forgot. I think, given our previous discussion, you've more than proven the point that "poorly understood" is the prevailing terminology and Tekaphor seconded that. I still think "inadequately understood" is better terminology, even if it's not the most common one, but I really don't care that much one way or the other. For the time being, I've removed the citations entirely, simply because I don't think we should really need citations for what's really a single word, when you get right down to it. If you wanted to partially revert and put one or two back in, just "for the record" in case there are future concerns, by all means do so. Oh and to save anybody else who wants to check some time, yes indeed, all 6 sources use the words "poorly understood" in their abstract on PubMed. --RobinHood70 (talk) 03:39, 12 August 2009 (UTC)
Good, when Afterwriting still wants i put back most cited 1 or 2 reviews. Thx RetroS1mone talk 03:39, 12 August 2009 (UTC)
I have removed "poorly understood" from the opening sentence of the introduction on the grounds that it is poor encyclopedia style to include contentious or possibly contentious comments at the very beginning of an article. I suggest that this issue should be addressed either later in the introduction or in another section. And I will appreciate it if RetroS1mone and other editors don't revert this edit without discussion. Afterwriting (talk) 13:08, 12 August 2009 (UTC)
"Poorly understood" was in article 2 years long before Afterwriting removes unilaterally wo discussion. I do not agree w Tek or RobinHood about much things but we agree, MEDRS say "poorly understood." I gave 23 citations for "poorly understood." I put 6 citations, MEDRS reviews w "poorly understood" in Abstract, RobinHood70 said they were not needed, I agree, it is may be least contentious thing about this article. It is not contentious or possibly contentious, it is exactly what MEDRS says. Hundreds from articles say it. I discussed reasons before I reverted. I put explanation one month ago on Afterwriting's talk page, Afterwriting did never respond. I explain again yesterday before I revert. RobinHood agreed. Afterwriting reverts and changes before they discuss, says other people are not allowed to. And Afterwriting puts cite tag when i just gave 23 sources. I revert now and I will appreciate when Afterwriting discusses why they think there opinion about word "poorly" is more importent then MEDRS.
Second problem, Afterwriting puts back "poorly understood" but says it is some research articles say it. This is a medical article, it uses MEDRS, every thing in article should be from MEDRS, we do not say, research articles say for every thing in article. RetroS1mone talk 02:03, 13 August 2009 (UTC)
I haven't researched this much but maybe if Afterwriting states why "poorly understood" is contentious then maybe a discussion could be started to reach wording acceptable to both? Is there a specific meaning to poorly understood that makes that particular wording more correct than others besides it's a common term? A lot of the citations that say "poorly understood" go back 5 or more years. There has been much research since. There are about 5000 articles on medline. There is a lot known, ie the long list of risk factors such as a father in professional/managerial occupation in childhood is a risk factor for CFS. Not everything is poorly understood. Ward20 (talk) 02:49, 13 August 2009 (UTC)
Retro~, can I remind you that other editors are entitled to make considered changes and improvements to articles regardless of how long a so-called "consensus" version has existed. You also seem to be assuming a considerable degree of personal ownership of this article which, as you should already know, is not acceptable. I did not respond to your comments on my talk page because I have no interest in engaging with someone who blames me for the recent "edit warring" when, in fact, it is your own constant edit warring which is the principal cause of the problem. You also frequently distort other people's comments - as you have done about me above - to mean something quite different from what was actually written. I look forward to you becoming a more co-operative editor in future. Afterwriting (talk) 11:31, 13 August 2009 (UTC)

(outdent) Until Afterwriting's post, above, I wasn't aware of the post on his page. I'd just like to respond to point 2, which hasn't been brought up anywhere else that I recall. To save people some clicking, the point says: "poorly means there is not much knowledge and state from it is poor. inadequately makes a judging, is POV imho."

If anything, I would take the opposite stance. "Poorly understood" can take on a variety of meanings from "not enough understanding" to "we know exactly what it is, but people haven't educated themselves about it". It's that latter definition that's the concern, since it would mean that CFS is known to be either biological or psychological in origin, but that people are just too uneducated about the subject to be aware that this is a known fact (which could be seen as condescending wording towards those people). Obviously that's not at all the case. "Inadequately understood" makes it unambiguous: "there's not enough understanding".

Now, that brings up the question of why "poorly understood" is used so often. The first reason is that it's probably going to be taken as "not enough understanding", as that's the more common interpretation of the term. At the very least, I can say that I read the term in the lead when I first looked at the article back in about January and took it that way. It wasn't until someone changed it that I went "Oh yeah, good point!" But the second reason "poorly" is probably used is simply a question of word complexity. "Poorly" is a much simpler word than "inadequately", and therefore used by and accessible to more people. Certainly if we were re-writing this for a Simple English version of the article, I'd be arguing strongly in favour of "poorly" there. As it is, I think "inadequately" is the more accurate term and is not at all judgemental or POV. In the interests of resolving a debate over a single word that's gone on for far too long as it is, I think we've can all agree that "poorly" is the term used most often, and as I've already stated elsewhere, given that that's the case, I'm willing to let it stay in this article as well.

Alternatively, as others have suggested, we can reword the phrase entirely, to include wording like "not well understood" or some other a more encyclopedic version of "we just don't know enough about it". --RobinHood70 (talk) 19:48, 13 August 2009 (UTC)

OK people you are soon wo me, Colds7ream threatens to block me and then you can revert to spring 2008 and also my friends tell me, give up, so i will make an advice and let you edit or not. Every review article on CFS says the cause is not known and there is no diagnostic and most treatments do not work and it overlaps on other conditions. It is wrong imho, when uncertainty is not in lead, not at top. I do not want "inadequately" bc it is not in MEDRS. I do not care about poorly, it needs say uncertainty. Why we do not say from CDC, there is not medical explanation, the cause is not known, there is no diagnostic test. Thx RetroS1mone talk 03:39, 14 August 2009 (UTC)
I think you're right that it could probably stand to be in the first sentence. What about avoiding the issue altogether and using "...variably debilitating disorder or disorders of unknown etiology characterized by..."? It's not quite as broad-ranging as "poorly understood", but at least we'd stop debating whether it should be "poorly" or "inadequately". --RobinHood70 (talk) 03:50, 14 August 2009 (UTC)
Yay it is what i mean, we do not say poorly or inadequately we say from the CDC, it says there is not medical explanation, bc then it is not CFS, and it says the cause is not known, and it says there is no diagnostic test. May be not first sentence, first paragraph is OK and take out the stuff about some research articles call it. Thx RetroS1mone talk 03:56, 14 August 2009 (UTC)
Okay, I've changed the sentence, but left it where it is (last sentence in the opening para). I just noticed you suggested the CDC as the source - as I said in my edit summary, I just used what I think is the first MEDRS source that came up in a search. Feel free to change it to the CDC or anything else if you'd like (if for no better reason than to trim down that long list of references). --RobinHood70 (talk) 04:18, 14 August 2009 (UTC)

A Gene Signature for Post-Infectious Chronic Fatigue Syndrome

Full article: [1] Maria Sieglinda von Nudeldorf (talk) 10:08, 11 July 2009 (UTC)

Thanks for the link. Another good reason for not merging PVFS with CFS. Sam Weller (talk) 22:28, 11 July 2009 (UTC)
Post infectious CFS is not CFS?? RetroS1mone talk 03:57, 13 July 2009 (UTC)
My understanding of the theory and results presented in the PDF file is that post-viral CFS may be different from other forms of CFS, and therefore only post-viral CFS patients were looked at in the study. This doesn't confirm that post-viral CFS is different from other forms of CFS, it just attempts to identify the processes going on in those patients who clearly acquired CFS after a virus. If I understood correctly, their results point fairly strongly to a possible immune-evading virus, though a lot of it was over my head so I'm not sure if I necessarily understood that correctly.
What I found interesting was their seemingly off-hand assumption that CFS patients could/should be grouped into a minimum of three groups: psychiatric, post-viral, and non-post-viral. To me, that implies that at least some researchers take it for granted that all three cause-types are possible for different forms of CFS. --RobinHood70 (talk) 05:20, 13 July 2009 (UTC)
You're right, Rob, they do work with the hypothesis that there is more than one group. [2] Sam Weller (talk) 08:35, 13 July 2009 (UTC)

Sorry for the entries in this section I've made which do not belong here. RobinHood70, you may be interested with regards to gene expression evidence for seven subtypes by Kerr et al (2008): http://www.journals.uchicago.edu/doi/abs/10.1086/533453 . The full text can be viewed here: http://www.cfsrf.com/pdf/CFS-gene-1c.pdf . Its emphasis upon infective agents in delineating subtypes is quite strong and may merit inclusion in this vein. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 04:36, 14 August 2009 (UTC)

Thanks, I'll have a look at it tomorrow. --RobinHood70 (talk) 04:52, 14 August 2009 (UTC)
Are there any recent reviews looking at the differences between postinfectious and noninfectious cfs? I believe the Japanese criteria make a distinction, and they have done some small-scale preliminary work on psychosocial characteristics and prognosis that appears to support the idea: PMID 12442562. PMID 12442563. Sam Weller (talk) 07:45, 14 August 2009 (UTC)

Sam Weller, not a specific study of differences between both groups, however sudden flu-like onset patients had a greater number of spinal fluid abnormalities as per this study: http://cvi.asm.org/cgi/content/full/12/1/52 . TauCeti2009 (talk) 15:05, 15 August 2009 (UTC)

Thanks, maybe postinfective research should be summarized in the 'main' Pathophysiology article, then mentioned here? Sam Weller (talk) 22:49, 15 August 2009 (UTC)

MUPS

Retro has a number of MEDRS references for MUPS relating to CFS/FMS, etc. and because of this she thinks she can just plaster the word MUPS everywhere throughout the article. While I actually do agree with the MUPS argument myself, that doesn't mean I want to go and put this thing all through the article. The problem is that the word MUPS doesn't appear in the major reviews for CFS (I just grepped all the CFS reviews I have, and it doesn't appear even once). I hadn't even heard of the acronym MUPS until Retro started bandying about the term, although I am familiar with the fact that these syndromes are overlapping.

My view is that while it may be worth mentioning the word in a section about overlapping disorders, there isn't enough WP:weight to start using the MUPS term throughout the articles.

Here is a good, well-cited systematic review for IBS which discusses these overlapping syndromes: PMID 11910364. --sciencewatcher (talk) 14:37, 13 July 2009 (UTC)

Sorry that i bandy :) here is 8 MEDRS reviews that plaster ;) "medically unexplained" everywhere throughtout there abstracts.
Here is Deary the title is "The cognitive behavioural model of medically unexplained symptoms: a theoretical and empirical review." and the first sentence in abstract is "The article is a narrative review of the theoretical standing and empirical evidence for the cognitive behavioural model of medically unexplained symptoms (MUS) in general and for chronic fatigue syndrome (CFS) and irritable bowel syndrome (IBS) in particular."
Here is 7 more CFS reviews with medically unexplained in abstract,
PMID 19122123 "Customizing treatment of chronic fatigue syndrome and fibromyalgia: the role of perpetuating factors." "Syndromes characterized by chronic, medically unexplained fatigue, effort- and stress-intolerance, and widespread pain are highly prevalent in medicine. RESULTS: In chronic fatigue syndrome (CFS) and fibromyalgia (FM), various perpetuating factors may impair patients' quality of life and functioning and impede recovery."
PMID 18267050 "A precarious balance: using a self-regulation model to conceptualize and treat chronic fatigue syndrome." "The self-regulation model is a potentially powerful explanatory framework for the consideration and treatment of CFS and medically unexplained symptoms in general."
PMID 15266475 Here is a Cochrane review about GET for CFS, it says CFS is medically unexplained, first sentence of abstract.
PMID 12421101 "Chronic fatigue syndrome: probable pathogenesis and possible treatments." First sentence from abstract, "Chronic fatigue syndrome (CFS) belongs in the medically unexplained illnesses."
PMID 12194905 "A status report on chronic fatigue syndrome." in abstract is "(CFS), a medically unexplained condition"
PMID 9218987 "Chronic fatigue syndrome. A practical guide to assessment and management." "We regard chronic fatigue syndrome as important not only because it represents potentially treatable disability and suffering but also because it provides an example for the positive management of medically unexplained illness in general."
PMID 8856816 "Chronic fatigue syndrome." "Chronic fatigue syndrome (CFS) is a medically unexplained illness"
That is just CFS reviews w/ medically unexplained in abstract and i do not give the textbooks, when people want them pls ask i will give references. RetroS1mone talk 01:31, 14 July 2009 (UTC)
Agree with ScienceWatcher. There is a world of difference between 'the symptoms are medically unexplained, because the cause is unknown' and 'the patients have "Medically unexplained syndrome" (aka somatization).' Sam Weller (talk) 09:47, 14 July 2009 (UTC)
One definition for some psychiatrists is, MUS is somatization therefore MUS always means somatization?? That is not what literature says. A medically unexplained syndrome is a group from medically unexplained symptoms, there is not "Medically Unexplained Symptoms" and "medically unexplained symptoms". In MEDRS i did read, only time capitol letters used is, at beginning of a sentence. Medically unexplained symptoms are medically unexplained symptoms, some psychiatrists think MUS=somatization but not every psychiatrist thinks it and bc sth is medically unexplained does not say, it does not have a physical cause. RetroS1mone talk 12:47, 14 July 2009 (UTC)
I have to agree with Sam and sciencewatcher on this one. There is insufficient evidence that the term MUS or MUPS is frequently associated with CFS. While the wording may appear in some of the literature, it's not clear that they intend it to be used as a descriptor of the broader category of MUPS, which is seen as possibly being a defined category or even a condition in its own right in the sources described in the MUPS article. To introduce the term and the link into the CFS article confounds the two conditions and potentially raises Neutrality and verifiability concerns.
Per Burden of evidence rules, as the person who wants the text added, it's up to you, RetroS1mone, to prove beyond a reasonable doubt that it was intended by the authors of the various documents you cite that "medically unexplained" should refer to MUPS, and I don't believe you can do that. --RobinHood70 (talk) 16:49, 14 July 2009 (UTC)

Wikipedia says what reliable source says. A reliable source says, "MUPS syndromes include chronic fatigue syndrome" and some people say ok but can you "prove beyond a reasonable doubt" the author meant MUPS the way Rob and Sam think Retro thinks they mean MUPS, that is not possible and who cares for it, the reliable source said "MUPS syndromes include chronic fatigue syndrome." Some patients and activists say, "medically unexplained symptoms" = somatization and it can not mean another thing but that is the fallacy of composition. I amde a subpage [3] with some from hundreds of references in peer review literature in where authors say chronic fatigue syndrome and medically unexplained physical symptoms or medically unexplained symptoms or medically unexplained syndrome or medically unexplained illness. I am saying, there is not so much evidence like this for most form the things in the article.

I give example, Signs and symptoms, Onset it says CFS starts suddenly "usually accompanied by a "flu-like illness"" with a reference and a link for Wikipedia flu-like illness. Sciencewatcher said there needs be major reviews and say MUPS in abstract, this reference does not say "usually accompanied by a "flu-like illness"" in abstract so there needs a new source.

OK, I look for reviews w CFS and "flu-like" in abstract, there is 11 on PubMed and 8 are English.

  • 18801465 says flu-like symptoms, it does not say "flu-like illness" is only cited by 2.
  • 16481501 and 15196898 is about a bacterial infection, it does not say CFS starts with flu-like illness
  • 8993762 says "suggestive of a flu-like illness" that is a world of difference from "a flu-like illness"
  • 1619343 is not cited it is the Journal of the Louisiana Medical Society it says patients "usually describe a flu-like state" that is a world of difference from "usually have a flu-like illness"
  • 2180624 is about Lyme it does not say CFS starts with flu-like illness
  • 2846619 and 2691680 does say it but it is from 1988 and 1989 and from same author and it says "'flu-like' illness" it does not say "flu-like illness" that is worlds apart.

REsult, only two reviews and not in Lancet or BMJ and 20 years old, and they say '"flu-like" illness' they do not say "flu-like illness" Haha says Sam Weller, they mean "an illness that is flu-like" that is a world of difference from "flu-like illness" Reification fallacy. Sciencewatcher says, wp:weight says we can't put it in it is just 2 old reviews. Rob says, burden of proof is on editor that puts in in, to prove the authors mean "flu-like illness" like part of the Wikipedia article flu-like illness means it. RetroS1mone talk 03:15, 15 July 2009 (UTC)

It's not just patients and activists that equate MUPS with somatization disorder, the entire History and usage section in MUPS says so as well. This lends far too much weight to the idea that CFS is entirely somatic somatoform in nature, and I think it's on that basis that you're getting resistance to the fact that the term is being added to several articles where it may not necessarily belong. Perhaps if the MUPS article was less geared towards only somatic psychosomatic interpretations of the term, people wouldn't object as much.
I can understand your frustration here, and I think I see where you're coming from, but the term "Medically Unexplained (Physical) Symptoms" as it's used in the MUPS article seems to be describing an entity or category of its own, which some people group CFS and other illnesses into. It doesn't seem to be a widely recognized descriptor, though, and none of the CFS papers that I have access to make it clear that they use the term "medically unexplained" to refer specifically to the broader idea of MUPS...they simply describe CFS using perfectly natural wording that happens to include the words "medically unexplained". Now if we make the MUPS article simply about the phrase "medically unexplained" as opposed to the specific term "Medically Unexplained Physical Symptoms", then it would be entirely appropriate to link CFS to the "medically unexplained" article...but then again, I don't think a two-word phrase would really qualify to be a Wikipedia article if it's not describing a specific entity. --RobinHood70 (talk) 04:14, 15 July 2009 (UTC)
It is a very good suggestion, i think also the MUS article needs help. I think you mean "psychosomatic in nature"?? RetroS1mone talk 04:25, 15 July 2009 (UTC)
"One definition for some psychiatrists is, MUS is somatization therefore MUS always means somatization?? That is not what literature says."
Who would disagree? But Retro edited MUPS away from saying it is not synonymous with somatization to saying that it is either: 1. synonymous; 2. overlaps; or 3. a lower threshold variant of somatization. [4] How can you state there that it is somatization (in whole or part) and then deny that it means that here? And I object to the recycled anti-"patients and activists" propaganda, even though I am neither. Just stick to encyclopedic language - e.g. your own "One definition for some psychiatrists" in the quote above. Psychiatric theories are not viruses or elements, and should be described as theories, constructs, working hypotheses, etc. And when they are also controversial, as biopsychosocial theory undoubtedly is, they should not elevated into facts, and then seeded throughout WP, as you have been doing. Incidentally, PVFS is not medically unexplained, as there is a proximate cause. Sam Weller (talk) 09:20, 15 July 2009 (UTC)
After reviewing the literature, it's apparent that "medically unexplained symptoms" is sometimes just another term for "cause not known", and as Rob stated, other authors use it to describe many different entities or even categories. "Medically unexplained symptoms" is ill defined and if it is mentioned with CFS in the literature, its use is counter to the present mainstream definition of CFS's categorization.[5]. IMO the article should not try to get around mainstream definitions with a link to a WP:POVFORK in the first sentence of the lead. CFS is not generally known as medically unexplained symptoms. I also want to make people aware that this MUPS thing is spilling over into other articles as well.[6][7]. Ward20 (talk) 04:03, 20 July 2009 (UTC)
Edit war over MUPS at Fibromyalgia Sam Weller (talk) 11:05, 20 July 2009 (UTC)
One reversion of editor that made sneaky edit summary and deleted MEDRS wo discussing on talk page is not edit war, i do not appreciate the recruiting and Wikistalking by Ward20 people it is very bad behavior ganging up on me again. MUPS is a standard term in medical for symptoms that are medicaly unexplained. medically unexplained symptoms. CFS is medically unexplained. FM is medically unexplained. I gave like 50 MEDRS for this, on my sandbox, here, at FM, to Sciencewatcher, with quotes, and it is like, no it does not say what it says. It is like i write, "people with FM hurt" and you say, it does not say "hurt" in the first sentence of abstract from top three cited reviews so you can not say hurt. People are disputing, CFS or FM is medically unexplained? Or disputing, some MEDRS say CFS and FM are FSS? Or trying to keep MEDRS things they do not like out of articles bc not "politically correct?" RetroS1mone talk 11:25, 20 July 2009 (UTC)
No edit warring? Hmmm, that's what you called it when you requested the fibromyalgia article to be locked down [8]. And as for this talkpage, when will the false accusations stop?; "recruiting", "wikistalking" and "ganging up". WP:HOUND states that "Proper use of an editor's history includes (but is not limited to) fixing errors or violations of Wikipedia policy or correcting related problems on multiple articles.", and you have a history of OR disputes. Anyway, I'm not getting involved with the MUPS debate. - Tekaphor (TALK) 14:20, 20 July 2009 (UTC)
I asked for semi bc IPs were deleting MEDRS content wo discussing, now they are doing again, deleting 13 sources and text wo discussion is vandalism.
For MUS, there is progressing in discussion, FM talk, "It looks like you have built a pretty good case for including "medically unexplained" in the article after all. --sciencewatcher (talk) 14:10, 20 July 2009 (UTC)" and Wikipedia_talk:Reliable_sources_(medicine-related_articles)#Medically_unexplained_symptoms. RetroS1mone talk 12:50, 21 July 2009 (UTC)

Yes, I said you had a pretty good case for including it in fibromyalgia, and probably CFS too. But I think the main problem you are having is the way in which you are doing your edits, and it almost looks like a crusade (I see now you have put it into the MCS article). --sciencewatcher (talk) 14:41, 21 July 2009 (UTC)

I would support that CFS is not MUPS, nor is FM or MCS or IBS, some forms of CFS may have medicallaly unexplained symptoms but this is not MUPS. There are any number of explanations for other forms, just not yet universally accepted, particularily by the psychologisers. It is one thing to have polarities even healthy in scientific debate, but another to persue such with fanaticism to the point of accusing others of 'recruiting', or being 'activists' which are arguably personal attacks, and we have seen it all before. Such emotional behaviour does not indicate sound reasoning processes! In science and other matters answers more often lie between polarities. The time has probably come if this Article is to regain credibility, for this to begin in consensus. Jagra (talk) 23:24, 26 July 2009 (UTC)
Jagra it is not what you would support, it is what the MEDRS supports. Medical articles, consensus is not a vote, it is MEDRS. RetroS1mone talk 03:59, 27 July 2009 (UTC)
Medically unexplained symptoms is not the correct wording to catagorize CFS symptoms in the first sentence because the definition of MUPS is too broad and vague (as explained on the talk page of MUPS). The diagnostic symptoms are defined in (the CDC-definition) the "most widespread in research and clinical practice"(Wyller 2007) and "the most widely supported scientific case definition... which is now considered the standard(Prins 2006)." Ward20 (talk) 10:18, 10 August 2009 (UTC)
The Deary cite used to support MUPS specifically says it is a 'suggested' theory, therefore not suitable for the lead. Replaced with CDC fatigue definition. Sam Weller (talk) 19:41, 12 August 2009 (UTC)

Herpes and CFS

A few years ago Nancy Klimas and others proposed a model for the perpetuation of CFS following the initial trigger event. PMID 11388124 and this model has more recently been adopted, with some updating, by the Japanese PMID 17561686. In these models re-activation of various herpes viruses is a consequence that might be a perpetuation factor.

A credible hypothesis has just been published PMID 19520522 which reviews the literature and concludes that some forms of CFS may actually be triggered by HZV or better known as shingles . It is proposed that CFS could in some cases be shingles without rash. Now this might seem a bit far fetched but is apparently supported by recent studies that show administering anti-herpes agents causes substantial improvement in some CFS. If any one has access i would be interested in knowing which agents were used. In any event I think the hypothesis belongs in the path/hypoth article. If HZV can be shown to trigger CFS, and more research is called for, then a reactivation or immune dysfunction it could also perpetuate it in others.

These types of models (see above) that attempt an all inclusive approach and a level of balance not always demonstrated should be also be included somewhere, perhaps a section in the main Article? Jagra (talk) 23:55, 26 July 2009 (UTC)

WP:MEDRS. Medical Hypotheses and "credible hypothesis" in the same sentence?? RetroS1mone talk 04:01, 27 July 2009 (UTC)
Retro: I'm unclear on what you're saying here. I don't see the words "Medical Hypotheses" anywhere in Jagra's note. Could you clarify, please? Thanks! --RobinHood70 (talk) 04:09, 27 July 2009 (UTC)
Jagra: It's an interesting hypothesis, though being so new (i.e., it still needs time for the research community to fully evaluate the hypothesis), I don't think it deserves more than a brief mention. --RobinHood70 (talk) 04:13, 27 July 2009 (UTC) Agree, although we once had a seperatee subarticle called Hypotheses, now amalgamated with Pathophysiology, (not replaced by) and therefore would qualify accordingly. Jagra (talk) 00:07, 28 July 2009 (UTC)
"Medical Hypotheses" is journal Jagra is linking, it is non-medrs and it is not peer-reviewed, they publish alot of fringe stuff, consensus at Wiki is, it is not reliable source. May be you can put that in your huge RfC on me like "RetroS1mone slanders a well-respected biological journal and subject Wiki to possible lawsuits" ;-) RetroS1mone talk 04:21, 27 July 2009 (UTC)
Ah, okay, thanks for the clarification. If the journal isn't peer-reviewed, then I would of course have to say that the theory doesn't deserve any mention at all. As for slander, well, something generally has to be untrue to constitute slander. Since I'm neither a researcher nor a doctor, I have no clue whether the journal is peer-reviewed, fringe, or anything else. And of course, you'll have the chance to respond to the RfC, huge as it has become, when it's completed and posted. --RobinHood70 (talk) 04:30, 27 July 2009 (UTC)
More deliberate mis-information Retro? Med Hypoth. is a member of the Elservier stable of scientific journals which has their own peer review process, [9] Now show me where it is non MEDRS? I cannot find it in the Article, and from what I gather there is no such 'hitlist', and I would expect each paper to be assessed on its own merits. Despite any rumoured wiki 'vote' this journal is mainstream although it will publish non-mainstream cutting edge papers, they must first pass MH strict criteria and review. It may not publish many papers that fit your perculiar likings, but I would choose your words more carefully, as you said it! Medical hypotheses have an important role in medical science, and this journal has a solid record of being the first to publish ideas that lead to breakthroughs. More than that many of the papers they publish are classified as 'reviews' by the US National Library of Congress, because of the extensive literature reviews they contain, in lead up to the hypothesis they state. Medrs will cite the review conclusions in such papers, but not necessarily the hypothesis, you mislead editors with such sweeping statements about journals and MEDRS. It is the content that is important here in regard to MEDRS, not the name of the journal, .
The models are are a seperate matter that this distraction avoids.
Jagra (talk) 00:07, 28 July 2009 (UTC).
Medical Hypotheses is discussed all the time on Wiki by people that are trying to get in there favorite fringe theory and it is not a reliable source, i will quote a most respected editor Eldereft, "In any case, links to Medical Hypotheses and similar such non-peer reviewed "journals" are unacceptable in this context by the self-published sources and the reliable sources sections of policy. I have accordingly removed them. - Eldereft ~(s)talk~ 19:54, 29 April 2008 (UTC)" Why is it nonRS?? Bc it does not have peer review. It's "reviews" are editorials, it is not me saying it, the journal calls all it's articles "editorials." "Models" not in RS do not go on Wiki. RetroS1mone talk 01:51, 28 July 2009 (UTC)

(outdent) Given what's stated at the Medical Hypotheses article, I'm inclined to agree with RetroS1mone here. It's not peer-reviewed and according to the edit history, you can describe the theories it presents as either "unconventional" or "innovative and creative", probably both of which would qualify as WP:FRINGE. If you'd like to discuss it at the MEDRS talk page though, Jagra, that would probably settle it for certain one way or the other. I searched the archives and didn't find anything mentioning it there. --RobinHood70 (talk) 02:04, 28 July 2009 (UTC)

Medical Hypotheses is very fun and i love it except the racist and sexist stuff but it is like a wierd science blog that gets printed, it is not a reliable source. RetroS1mone talk 02:57, 28 July 2009 (UTC)
Retro, your claim is that Med Hypoth is not peer reviewed, this statement is misinformation as the journal is indexed by the National Library of Medicine (NLM ID is 7505668) (Medline/Pubmed) which requires it to be peer reviewed. [10] I think the NLM is a better judge and authority of such matters! Elsevier requires review (as shown above) and the Journals own page says it appoints other reviewers when its own external editorial panel [11] needs more expertise. The expertise of this panel would appear to be quite considerable. The other statement Retro made was that it was the consensus of opinion of MEDRS that the journal was not RS, like you Robin I can find no such consensus and all Retro produces in support is a comment by an editor (on an unnamed Article!) my own experience with (not to belittle him) and his brief appearance on this page indicates, has limited knowledge in the area! Whilst the journal may publish cutting edge ideas it also publishes many 'conservative' ideas, that does not make it or the papers 'fringe' only new. Time alone will determine whether the community consider an idea fringe. As I said each paper needs to be considered (under MEDRS) on its merits and on what aspect is cited, a component review of the established literature in itself is not 'fringe' . MEDRS does not as far I can tell, determine by the journals name, but I am open to persuasion if Retro can support her claims? Jagra (talk) 22:25, 28 July 2009 (UTC)
Retro the models I have linked above are in reliable sources if you bother to read them. The link between CFS and herpes is not 'fringe' as it is published elsewhere in mainstream journals.Jagra (talk) 23:35, 28 July 2009 (UTC)
If indeed it is peer-reviewed, then we should definitely change the Medical Hypotheses article to reflect that, provided that we can find a reliable source that says so. If you don't have a source for that on your own, Jagra, I would strongly suggest bringing it up at MEDRS or Wikiproject Medicine so that someone who has better access to such information can confirm or refute it. --RobinHood70 (talk) 23:12, 28 July 2009 (UTC) See links added above Jagra (talk) 23:57, 28 July 2009 (UTC)
Jagra says Medical Hypotheses is peer reviewed bc it is listed on NLM, that is original research it is like, Aliens must exist because there is article about them on Wikipedia. Look to Medical Hypotheses web site, it says no peer review. Medical Hypotheses, it's main thing is, it is against peer review process. A editor supposably reads the article and says, OK, lets put it in, that is not peer review, it is like a blog where administrator reads comments and posts them when they are not to bad. It is called "editorial review" it is not peer review. RetroS1mone talk 13:21, 29 July 2009 (UTC)
There is no origonal research here!!!! only links. Clearly the Med hypoth processes meet the strict approval and regular review of the NLM in regards to peer review. Articles in this journal are regularily cited by authors of medical science papers in other journals. That is the purpose for the NLM indexing. No aspiring author would dare to cite a 'fringe' journal article if he expected to be taken seriously, yet they cite Med hypoth. Just what is Retro's definition of a peer anyway? Whether they are called an editors panel or reviewers panel is obviously immaterial to the NLM and I don't think Retro's still unsubstantiated claims or rather literalist mis- interpretations warrant further airing. I am not aware the Med hypoth is against peer review as she asserts, my understanding is the founder was against annonomous review and insists on transparency in the process, and the author gets to make any needed changes not the reviewer, before editorial acceptance. I consider such uninformed comments by her 'conservative rhetoric' or dogma rather than fact. As I have already said the NLM can better judge such matters than second guessing WIKI editors, but I am open (still) to be convinced otherwise. Jagra (talk) 08:57, 30 July 2009 (UTC)
Given that we have one for and one against the reliability of Medical Hypotheses, I would strongly suggest one of you take it to MEDRS and get them to weigh in on it. There are some very knowledgeable people there who I'm sure will be able to settle the matter. --RobinHood70 (talk) 09:42, 30 July 2009 (UTC)
RobinHood70, may be you can add Jagra's insight on the RfC, calling me conservative and dogmatic and literalist mis-interpretations?? A section w diffs is good, title "RetroS1mone is a conservative literalist" and you can show you and Jagra tried convince me I am wrong being so evil conservative!
srsly, Medical Hypotheses is non-MEDRS. Period. Full stop. Jagra can ask again when you want and hope you get a new answer this time. RetroS1mone talk 13:43, 30 July 2009 (UTC)
OK i asked on MEDRS. RetroS1mone talk 13:54, 30 July 2009 (UTC)

RS noticeboard, "Impact factor correlates with how often-cited a journal is, but that is not the same as reliability or as "mainstreamedness" of the journal, much less of the individual articles published by that journal. Sure, journals like Science are both highly-cited and mainstream, but if one uses impact factor to argue that (for example) Kumar et al. 2007 (PMID 17141968) is more reliable than Kung et al. 2008 (PMID 18544277) because the JCR impact factor of Medical Hypotheses (1.276) is much higher than that of Clinical and Investigative Medicine (0.475), then one will be sadly mistaken. Eubulides (talk) 21:52, 1 August 2008 (UTC)"

RS noticeboard Wikipedia_talk:Reliable_sources/archive_18 "I don't think any of these count as reliable sources, and policies like WP:REDFLAG, WP:UNDUE and WP:NPOV/FAQ#Pseudoscience suggest that policy would at least insist on more caution before using them"

"Medical Hypotheses: Indexed by PubMed, but not peer-reviewed. Seeks to provide a forum for "unconventional" ideas with minimal editorial "interference"; places responsibility for scientific accuracy and correctness of publications solely on the author's shoulders." User:Yilloslime/Questionable_Sources

Talk:Solar cycle "Basically, if a claim can be sourced only or almost only to Medical Hypotheses, it is almost by definition WP:FRINGE ."

Arbitration, "zero consideration for papers in Medical Hypotheses or Creation (except per WP:SPS). There are a great number of journals slushing around at the base of this pyramid who are desperate for submissions and relevancy. Some of their papers are just fine but the degree of pre-publication oversight is substantially less, so they need to be granted less consideration. (Eldereft)

OK? RetroS1mone talk 14:13, 30 July 2009 (UTC)

  • The claim that Medical Hypotheses is peer-reviewed is bizarre, given that its own website says that it is not. The journal is a venue for publishing medical speculation. No doubt sometimes the speculation is right, but regardless, articles published in that journal are not reliable sources for medical facts and figures. Eubulides (talk) 16:17, 30 July 2009 (UTC)
  • Reject. Papers in this journal should be seen as a kind of "Hey, guys, I've got this idea...". It's not peer-reviewed because there's nothing to review -- no methodology, no data, no nothing. You might publish something in Med Hype to get a reaction, to start lobbying for funding in a new area, or (more commonly) because you simply can't get your idea published anywhere else, and you don't have anything more than just an idea. (An idea based, we hope, on something plausibly testable and consistent with some other work, but still something that's at the "idea" stage.)
    I'd probably reject this as WP:CRYSTAL (the data's not there), although it might be acceptable to say something like "One person has speculated on a relationship between..." WhatamIdoing (talk) 20:01, 30 July 2009 (UTC)
Thank you for looking into that, Retro. I only looked on MEDRS and didn't find anything; I never thought to check the regular RS archives. And while adding Jagra's behaviour to the RfC would not be relevant, I have issued an NPA warning. --RobinHood70 (talk) 20:08, 30 July 2009 (UTC)
Do not mistake this for arguing in favour of Medical Hypotheses in any way, as I've said before, I have no opinion on it whatsoever, but in the link that Eubulides provided, it clearly indicates that it is editorially reviewed. MEDRS states: "A good secondary source from a reputable publisher will be written by an expert in the field and be editorially or peer reviewed." (emphasis added) So I think it really comes down to:
  1. Are they published by a reputable publisher?
  2. Is the material written by an expert in the field?
Honestly, I'm leaning towards not including this myself, as it sounds to me like they regularly present untested theories, but as stated in numerous places, Wikipedia is about fact, not truth. In my mind, that makes the argument for addition not entirely out of the question. --RobinHood70 (talk) 20:36, 30 July 2009 (UTC)
In summary it seems Med Hypoth is not 'non-MEDRS', claiming it is not peer reviewed is a matter of semantics and misleading, given editors are chosen on the basis of their expertise, and in all respects likely meet the definition of a "peer" anyway. The journal is obviously reputable as it is indexed by NLM, and meets its peer review requirement. My dictionary says of Hypothesis; "a proposition proposed as an explanation for the occurance of some specified group of phenomina either asserted merely as a provisional conjecture to guide investigation OR accepted as highly probable in the light of established facts." To claim Med hypoth only publishes the former is ludicrous and shows some can not differentiate, thus the term credible hypothesis is not an oxymoron. Further Wiki medical Articles have provision for an Hypotheses section. I happen to agree with comments by Eubulides regarding use of the Impact factor, for it is essentially a marketing tool aimed at advertisers in journals and really should not be used in any other context. Thanks Retro for supporting your argument, not that i necessarily agree with those posts as not all seem to be from uninvolved parties? Bear in mind that the Patho sub article is an amalgation with the previous Hypotheses sub-article and not a replacement therefore this is valid addition, a small comment along the lines of Whatamidoing's suggestion added to the herpes findings would seem appropriate, and the models, both reviews, to be added as well. I think the Pathophysiology title should more correctly be changed to Pathophysiology and Hypotheses, to better reflect the content and avoid future confusion.Jagra (talk) 02:01, 31 July 2009 (UTC)
Holy crap Jagra: why do you keep saying it is (or might be) peer reviewed when their own website says plain as day it is not peer-reviewed? Read their website and you will see it says they use "peer usage versus peer review", and "editorial review is the main alternative to peer review", i.e. they use "editorial review" not "peer review". This is a big difference, not just semantics.
And in response to Rob's comment about Editorial Review being acceptable for MEDRS: if you read MEDRS it says "A good secondary source from a reputable publisher will be written by an expert in the field and be editorially or peer reviewed". However the article in question is not a review (look in medline and you will see it is not classed as a review). --sciencewatcher (talk) 02:30, 31 July 2009 (UTC)
Apart from the profamities, I repeat again for your benefit, an editorial review conducted as a peer review is obviously sufficent to meet the peer review requirements of the NLM, and its demonstrated use in referencing in many medical science papers over a long period of time testifies to that and to its broader acceptance, it is semantics to interpret otherwise. This paper or any other may not be a review but as you know that does not specifically exclude its use in the context suggested by the experiencd MEDRS editor Whatamidoing. Although it might meet the definition of 'speculation' that would exclude any hypothesis paper from any Articles Hypothesis section, as hypothesis reviews are extant, which by definition would defeat the purpose for such Sections or Articles. So how would you propose we differentiate between hypotheses? Jagra (talk) 02:24, 4 August 2009 (UTC)
May be quote from WP:MEDRS can help, "Still others, such as Medical Hypotheses, publish speculative proposals that are not reliable sources for biomedical topics." RetroS1mone talk 03:10, 4 August 2009 (UTC)

Actually, there is no peer review requirement for PubMed - it says so on their FAQ. --sciencewatcher (talk) 03:14, 4 August 2009 (UTC)

Aside from Med Hypoth, there are other journals which mention herpes viruses, in particular HHV-6 (Human herpesvirus 6) in CFS. See http://www.be-md.ncbi.nlm.nih.gov/pubmed/10738137 , http://jcm.highwire.org/cgi/content/abstract/33/6/1660 , http://www.jstor.org/pss/4457610 . These findings aren't always replicated though : http://www.journals.uchicago.edu/doi/abs/10.1086/313908, http://www.jstor.org/pss/4459091 , and other viruses have been mentioned : http://ajp.amjpathol.org/cgi/content/abstract/145/2/440 , http://jcp.bmj.com/cgi/content/abstract/61/5/623 . An ongoing trial at Stanford is using Valcyte with a subset of CFS patients who have "elevated HHV-6 and EBV titers and clinical symptoms of a viral syndrome with neurocognitive complaints and sustained fatigue," calling it VICD (Virus Induced CNS Dysfunction) http://www.vicd.info/what.html , which is more recent.

It's all very interesting although somewhat conflicting. HHV-6, cytomegalovirus, EBV and enteroviruses have been implicated and although infective agents have been proposed as a cause, there's no agent which is diagnostic or is found throughout. It might reflect a subset of patients, but in the absence of subsets used clinically at this point it's a theory with variable findings.

CDC: http://www.cdc.gov/CFS/cfscauses.htm

It now seems clear that CFS is not caused exclusively by any single recognized infectious disease agent. CDC's four-city surveillance study found no association between CFS and infection by a wide variety of human pathogens, including EBV, human retroviruses, human herpesvirus 6, enteroviruses, rubella, Candida albicans, and more recently bornaviruses and Mycoplasma. Taken together, these studies suggest that among identified human pathogens, there appears to be no causal relationship for CFS as a whole. However, the possibility remains that CFS may have multiple causes leading to a common endpoint, in which case some viruses or other infectious agents might have a contributory role for a subset of CFS cases. TauCeti2009 (talk) —Preceding undated comment added 23:21, 16 August 2009 (UTC).

Inappropriate contact by banned or current users

I didn't know where else to post this that all of us would see, but I figured this would do.

RetroS1mone recently mentioned being contacted offline by "a certain banned user"[12], whom I can only assume is Guido. I too have been contacted offline by Guido (details in next para). Jfdwolff mentioned earning "some unpleasant company" in my notification of the RfC on his talk page, and although he didn't elaborate on that, he later went on to say "it wasn't just Guido". Has anybody else had contact from any current or banned users that they deem inappropriate?

The details of the two contacts I've had with Guido, for the record:

  1. During the course of the Wikiquette alert back in June, I made an unresearched statement about Guido, which he objected to in a private e-mail. I agreed that it was inappropriate for me to have said that without researching it and replied, thanking him for pointing it out. Following that, I voluntarily edited the statement, though there was no specific request from him to do so.
  2. When it was suggested that the PVFS and CFS pages be merged, which I agreed with, Guido again contacted me, trying to sway my view on the subject. I was unaware of this particular policy at the time, but I still considered it to be highly inappropriate for a banned user to be trying to sway the view of a current user and contribute to the Wiki by-proxy, so I deleted the e-mail without reply.

As I said to Jfdwolff, if anyone is either deliberately or inadvertently inflaming the situation in any fashion, it should definitely be brought out into the open so that the situation can be addressed. The last thing we need on a controversial article is someone provoking people further. --RobinHood70 (talk) 23:05, 28 July 2009 (UTC)

A banned user, you can figure out i will not say the name again, sent me email, threatened me to not say anything about them again, said they never did make legal threats, i think ArbCom might disagree, said they did not conduct an experiment with Wikipedia, i think ArbCom might disagree, said people they know on Wikipedia were contacting them about me. The banned user makes condescending comment about I need to read more etc, very upsetting for me and i am sorry to other people when they are not the people this person was talking about, I do not have way of knowing who or when this person is exagerating. RetroS1mone talk 13:27, 29 July 2009 (UTC)

If you make incorrect statements about a banned user, he has in my opinion the right to contact you and ask you to correct it (as in point 1 by RobinHood70). Apart from that, he should stay out of here. If he further abuses Wikipedia email, he will be reblocked without Wikipedia email privileges (he currently still has those). RobinHood70, you did the right thing in my opinion, and RetroS1mone, just ignore any future posts he sends you, as the things he claims are incorrect have been discussed to death, and his opinion on those conduct issues is no longer wanted here. To reblock Guido without email privileges, it would be best to contact User:Rlevse, the latest blocking admin. I would do it myself, but I am too involved in this case (Guido, not CFS). Fram (talk) 09:24, 30 July 2009 (UTC)

Thanks for the advice, Fram, I'll definitely keep it in mind. --RobinHood70 (talk) 09:40, 30 July 2009 (UTC)
I don't think I can take RetroS1mone's claims of "threats" seriously when most of them on the CFS talkpages have previously turned out to be false (eg against Ward20, RobinHood70, Sam Weller). See the phrase "the boy who cried wolf". As for being "upset" about condescending comments etc, see the phrase "you can dish it out but you can't take it". :-) _ Tekaphor (TALK) 03:08, 31 July 2009 (UTC)
What was the date of the emails? If you prefer to email it to me that's okay. — Rlevse • Talk • 23:34, 31 July 2009 (UTC)
The only thing left in my e-mail at this point is my first reply to him, which was June 12, 2009, so his e-mail most likely came to me the same day or the day before. The second contact I no longer have any record of at all, since I didn't respond to it, but it was in regards to the PVFS/CFS merger, so it would have been around the time of this edit (June 22) or the ensuing discussion. At least for me, he hasn't attempted any further contact since then. --RobinHood70 (talk) 00:46, 1 August 2009 (UTC)
Mine was June 13. RetroS1mone talk 02:34, 1 August 2009 (UTC)
Both are over a month old. Anything of interest of any kind more recent? — Rlevse • Talk • 03:13, 1 August 2009 (UTC)

(outdent) I think maybe that's why Fram suggested waiting to see if there was any further contact, though I wasn't sure when Retro's contact with him was. You may also wish to contact JFW in case he's not monitoring this thread any more, as it sounds like his experience was less-than-pleasant for him. --RobinHood70 (talk) 03:41, 1 August 2009 (UTC)

I have completed my investigation into this and have blocked Guido's wiki email usage. — Rlevse • Talk • 19:38, 1 August 2009 (UTC)

I've not had any recent emails from Guido. My comments refer to incidents a little bit longer ago. JFW | T@lk 21:34, 1 August 2009 (UTC)

Perspective Bias.

This article has been re-edited to provide mostly psychologically and psychiatrically motivated etiologies. In a balanced article, this would be a balanced viewpoint. However, it also ignores a body of peer-reviewed research which shows abnormalities across a range of bodily systems.

It is quite disturbing that physiological mechanisms and theories are given less weight. The article I read approximately 18 months ago outlined a range of hypotheses and cited a range of journals. I am disappointed in the narrow focus of the current material. My journal access is inaccessible now, but peer reviewed articles are readily searchable on neuroendocrine, neuroimmunological, perfusion abnormalities, etc.

As the broad range of material in this article has now been skewed, I no longer consider it a balanced piece. May I simply link to the CDC's page on pathophysiological studies on CFS to demonstrate that alternative approaches exist: http://www.cdc.gov/cfs/publications/pathophysiology.htm .

I would like to see this piece revert to the same standard of balance it had previously. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 19:45, 8 August 2009 (UTC)

Have you read this page? It seems to cover everything you're talking about. The main CFS article perhaps needs to be edited to summarise the child articles properly. If you want to do this, go ahead. And you don't need journal access to edit here (I don't have any journal access). Just use pubmed, google scholar, etc. and you can get access to the abtracts of all the research. The full-text of many articles is available for free, and for other articles you can ask people here who do have access to post extracts from the full-text of anything you need. --sciencewatcher (talk) 20:07, 8 August 2009 (UTC)
My apologies, ScienceWatcher. I didn't know there was a separate entry for the pathophysiology. I am more than happy with the numerous articles linked via the pathophysiology link and absent mindedly missed it - the article I had previously read had it all in one place, so to speak. I don't tend to cite articles unless I've read them in full myself and can scrutinize the methodology, but I'm hoping that someone more qualified than myself will take up that mantle, particularly where neuroendocrinology is concerned. My concern was that the article didn't cite the wide array of findings from multiple disciplines. Now that it evidently does, please excuse the erroneous criticism. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 20:27, 8 August 2009 (UTC)
I also find that the main article tends a bit more to the psychological side than maybe it should, but I don't think it's grossly out of proportion, and as SW mentioned, the Pathophysiology article covers a lot of it. While I tend to weigh in on the biological side myself, the CDC site seems to ignore psychological causation (or mixed causation) pretty much completely the last time I checked.
Oh and SW: this article is indefinitely fully-protected, so at least currently, TauCeti can't just "go ahead" and make changes. :) --RobinHood70 (talk) 22:09, 8 August 2009 (UTC)
Sorry, I didn't realise the article was protected. Can we remove the protection? I thought it was just the MUPS dispute with Retro, which doesn't seem (to me) to justify full indefinite protection. --sciencewatcher (talk) 00:21, 9 August 2009 (UTC)
I agree. I'll go file an unprotect request. It has been almost a month now, I think...it's probably time. --RobinHood70 (talk) 00:28, 9 August 2009 (UTC)
Done. --RobinHood70 (talk) 00:33, 9 August 2009 (UTC)

TauCeti2009's first impression was accurate. This article is supposed to summarize the Pathophysiology article, but it fails to do that evenhandedly. Pathophysiology contains ~2000 text words of which ~500 concern psychological theory. Mechanisms here contains ~300 words, of which ~200 are psychological. 25% in the main article bloated to 70% of the summary. Sam Weller (talk) 21:16, 9 August 2009 (UTC)

The summary section in question has expanded substantially since you posted 2 days ago, perhaps now the figure is more like >90%. - Tekaphor (TALK) 03:45, 11 August 2009 (UTC)

Australian and New Zealand Journal of Mental Health Nursing

One of RetroS1mone's recent edits removed material from the Australian and New Zealand Journal of Mental Health Nursing, stating that it wasn't MEDRS. I'd like a second opinion (possibly moving it to the MEDRS talk page, but starting here for now) on that, as the wording I found about them is not a phrase I'm familiar with. Also, the journal is discontinued, though it seems to have essentially just moved to a journal with a similar name. (See here for what I was looking at.) Both that site and the site for the new version of the journal use the same wording, referring to it as a "fully refereed journal". Is that the same as peer-reviewed? I found a multitude of uses of that phrase, but nothing actually telling me what it meant. --RobinHood70 (talk) 07:35, 10 August 2009 (UTC)

It appears to be peer reviewed based on another page that describes the review process for the International Journal of Mental Health Nursing, " manuscripts are peer reviewed by two anonymous reviewers and the Editor." Ward20 (talk) 07:52, 10 August 2009 (UTC)

Social issues

There is just no basis for this material in the two sources cited. It appears to be original research and I am moving it to talk.

"As there is no medical test to diagnose CFS, it has been argued that it is easy to invent or feign CFS-like symptoms for financial, social, or emotional benefits.[1][2]"

Ward20 (talk) 10:24, 10 August 2009 (UTC)

How does Malingering fit under Classification? Malingering was included in Society and culture previously.
Additionally there seems to be inaccurate information or original research in that section. For example, the sentence, "Along with fibromyalgia, CFS may be the second most malingered condition at 25-30% of cases."(van der Werf) (McDermott) The van der Werf study is not about malingering and only uses some malingering instruments to look at cerebral impairment. The McDermott review states, "For example, estimates of malingering range from 25% to 30% for fibromyalgia cases. (Gervais) McDermott stated two studies disagreed about the most likely ailment to be malingered, "...the most likely ailment to be malingered was mild head injury, followed by fibromyalgia or chronic fatigue syndrome, pain, neurotoxic disorders, electrical injury, seizure disorders, and moderate or severe head injury. (Mittenberg) In another report, malingerers more commonly presented with cervical pain and repetitive strain injuries...".(Hurst)
McDermott also states the Mittenberg 37% figure on fibromyalgia was for patients "in litigation," and "estimates of malingering varied by referral type." Without having the Mittenberg paper, it's difficult to tell in what context Mittenberg's data should be used. From the secondary sources I am beginning to suspect Mittenberg didn't lump fibromyalgia and chronic fatigue and chronic fatigue syndrome together, he may have used data for fibromyalgia patients in litigation and assumed fibromyalgia patients also had chronic fatigue syndrome or chronic fatigue. Ward20 (talk) 20:40, 10 August 2009 (UTC)
For the Classification section, it seemed the closest fit out of what was available, as that's one possible "classification" or perhaps "diagnosis" you could be faced with. Feel free to move it elsewhere if you feel it's a better fit, I'm anything but attached to where it is now, I just thought it was a lot worse under the Social issues section, since it's not really a social issue except in the fact that it can be perceived that way by some people. Since the paragraph gets into specifics about the percentage of cases that are malingered, etc., I didn't think it really addressed anything social per se.
For the rest of it, I'll let whomever inserted the data (RetroS1mone?) respond, as I was mostly concerned with the organization of the information and how it read, so I only did a little fact-checking. --RobinHood70 (talk) 20:56, 10 August 2009 (UTC)
Did WArd20 read those two books like they read Mittenberg?? Pls read the sources and do not delete by your opinion, assumptions thx. RetroS1mone talk 23:24, 10 August 2009 (UTC)
I certainly did read and search the two sources at the end of the sentence and found no passages to support the wording I removed. Your welcome to produce the passages that do support the wording. I stated, I don't presently have the Mittenberg paper. Would you please provide quotes from the Mittenberg article defining how Mittenberg differentiates or groups the fibromyalgia, chronic fatigue and chronic fatigue syndrome data, as a courtesy to substantiate the information per policy. (Note #2.)? Thank you. Ward20 (talk) 00:09, 11 August 2009 (UTC)
Ward20 we do not do original research on primary source, we report what secondary source says, i report what secondary sources say on Mittenberg. You can email Mittenberg when you are interested on their exact method but it is original research. RetroS1mone talk 00:16, 11 August 2009 (UTC)
RetroS1mone, you haven't produced a shread of evidence yet concerning the inaccuracy and original research I discussed above. Please provide evidence. "The source cited must unambiguously support the information as it is presented in the article." per policy. Ward20 (talk) 01:36, 11 August 2009 (UTC)
You say you read both books, why you do not re-write my writing in way you think agrees on source? That is better, then delete RS and accuse people and demand quotes, right?? RetroS1mone talk 12:42, 11 August 2009 (UTC)

(outdent) He's saying he read both books and didn't find what you added to the article. It's not his job to verify and re-write what you wrote, it's your job to prove it when it's called into question, as per the rules of WP:BURDEN. --RobinHood70 (talk) 18:41, 11 August 2009 (UTC)

  • (Following text moved from incorrect section to more relevant section, not directly in reply to previous post.)
The introduction contains the text "CFS is thought to be among the medical conditions most commonly feigned by malingerers," referencing citation 11 by McDermott and Feldman. However, I do not see how this reference provides evidence for this claim. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 01:06, 14 August 2009 (UTC)
That's correct, the source doesn't support the material because McDermott cited a study directly contradicting "CFS is thought to be among the medical conditions most commonly feigned by malingerers," so the material is WP:OR.(see last part of second paragraph) Also Per WP:WEIGHT the material doesn't belong in the lead. I had removed it here. I hadn't realized RetroS1mone readded it here. I wonder why it didn't show up as a color coded change ? Ward20 (talk) 01:51, 14 August 2009 (UTC)
With reference to the Neuropsychology of Malingering Casebook and malingering in CFS regards RetroSimone1's inclusion, I feel it is necessary to distinguish between malingering in the case of personal injury claims (Mittenberg, 2002) and malingering in the general medical setting. The text "CFS is thought to be one of the conditions most commonly feigned by malingerers" is misleading, as the Neuropsychology of Malingering Casebook which has been used as a reference states after citing what studies there are on the phenomenon that "Taken together, these data show that the vast majority of persons with CFS are not prone toward poor motivation or malingering." The text can be read via Google here: http://books.google.co.uk/books?id=VJwUw1jpinMC&pg=PA245&lpg=PA245&dq=chronic+fatigue+syndrome+malingering&source=bl&ots=2wzIR1AfpH&sig=g-e-gE8oKQY7pf9elZFs-2e3hRU&hl=en&ei=sr2ESt2rNsjB-QbSx5y7CQ&sa=X&oi=book_result&ct=result&resnum=3#v=onepage&q=chronic%20fatigue%20syndrome%20malingering&f=false .
I would prefer if malingering is covered that statistics on malingering in personal injury claims are not conflated or appear to be so in reference to a general medical setting. This is very misleading. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 01:43, 14 August 2009 (UTC)

Primary source

I'm re-adding the primary source information in the "Psychological and social factors" section in regards to abuse and idiopathic fatigue vs. CFS, originally added by RetroS1mone then later removed as "primary stuff" after the wording was changed to better reflect the conclusions in the source. While it is a primary source, MEDRS specifically states not to add primary sources to contradict a claim "unless the primary source itself directly makes such a claim", which indeed it does. This does not give either position undue weight in my opinion, but simply indicates that the conclusions of either view may be in question. --RobinHood70 (talk) 17:35, 10 August 2009 (UTC)

chronic mercury poisoning

I couldn't find CFS/ME discussed in the citations provided for this material. Removed to talk until verification is provided:

chronic mercury poisoning[3][4]

Ward20 (talk) 15:30, 13 August 2009 (UTC)

Neurasthenia & Malingering edits

An anonymous IP has recently removed Neurasthenia from the lead and the entire Malingering section. I've restored the Neurasthenia since it's still listed in the ICD-10. Given that it's been removed from the DSM-IV, I suspect it doesn't belong in the lead, but that's another discussion, so for the time being, I simply restored it.

As for the Malingering section, while I can certainly see the argument as to why it should be included here, I'm still not convinced that it wouldn't be better-suited to the malingering article and left off of here. The fact that CFS is often perceived to be malingering belongs here without question; the fact that malingerers sometimes simulate CFS is a little more dubious for me in terms of whether it belongs here or not. To give a parallel example, I look at it the same way as if you'd put Ponzi scheme into the Investment article. For that reason, I've left that one out. --RobinHood70 (talk) 08:27, 14 August 2009 (UTC)

Hi, apologies for the removing of neurasthenia, by all means replace it. I didn't realize it was still used in the ICD 10. As for the Malingering section it certainly has no place in this article. It wasn't in a few months ago and all of a sudden during a quick perusal of the text I noticed a whole new section, even with it's own title..it cannot be relevant so thus I removed it..87.112.25.75 (talk) 09:00, 14 August 2009 (UTC)

Malingering in CFS, they think it is common and is 25-30% of cases, to 40% when there is personal injury claim. Some sources say lower, but it is notable and it is MEDRS like McDermott et al and Mittenberg et al. When reliable source says 25-30% from investment is Ponzi schemes it should be in the investment article. When reliable sources say, CFS symptoms relative easy to fake and 25-30% can be from malingering, it should be in article. The paragraph about malingering has 7 sources but Ward20 says it is OR. Here is quotes for Ward20, i put quotes in the reference.
  • "While almost any medical illness can be malingered, there is evidence that certain types of medical problems are more likely to be malingered than others. In a study of over 30,000 cases referred to 144 neuropsychologists, the most likely ailment to be malingered was mild head injury, followed by fibromyalgia or chronic fatigue syndrome"
  • "It is relatively easy to malinger pain because everyone has had the experience of pain and therefore knows how it should appear to others. Hamilton and Feldman [22] note that the malingerer's pain complaint “will vary according to the medical sophistication of the patient; they may present with diffuse pain, or patterns of pain that are not consistent with known medical conditions or with the anatomy of the peripheral nervous system” (444-5). In particular, these cases may present as specific maladies, such as repetitive strain injury or variable limb pain (ie, in reflex sympathetic dystrophy, fibromyalgia, or chronic fatigue syndrome), though the bulk of the literature has focused on low back pain or pain related to the cervical and thoracic spine (especially whiplash injuries). The malingerer commonly knows the characteristics of the pain associated with the condition he or she is feigning. One unfortunate result of the wide availability of high quality medical information on the Internet is that malingerers now have abundant guidance on how to convincingly display pain and disability", i put italicks, bc it is not OR i am saying this.
Do people want more quotes pls say, i will give more quotes from other sources. Thx RetroS1mone talk 12:45, 14 August 2009 (UTC)
I have just reverted back 3 of RSs edits. I am not being contrary but am trying to make this article more compact, easy to understand and trying to remove some unnecessary bloating up of the text. I don't see the reason in making the same point over and over again with superfluous texts and citations that just stiffle the whole flow of the page.87.113.16.70 (talk) 14:41, 14 August 2009 (UTC)
RetroSimone1, as I have previously stated, you are using a study that relates to personal injury claims to generalize to the patient group, if it was yourself that inserted the text on malingering into the header of the CFS article.
The study that you cite was NOT studying the patient group and it was NOT studying patients in a general medical setting, but within the context of malingering with regard to personal injury claims - in other words, litigation. You cannot extrapolate that study and include wording to the effect that CFS is one of the most commonly malingered conditions into the introduction without -any- caveats without misrepresenting the study you cite to support it. You are comparing apples and oranges and I question the inclusion of such wording into the introduction of the entry.
Once again, the statistic you cite is for personal injury claims. It is not a statistic that you can generalize outside of the domain of personal injury claims. If you have evidence of rates of malingering to that degree in a general medical setting then by all means produce it. TauCeti2009 (talk) 15:11, 14 August 2009 (UTC)
I'm not sure that it isn't relevant, as long as the context is made clear. But it probably shouldn't be in the lede. — Arthur Rubin (talk) 15:40, 14 August 2009 (UTC)

Arthur Rubin, I am not saying it is irrelevant if it is cited with a caveat, e.g. "CFS is one of the most malingered conditions in personal injury claims." However, the text which has since been removed had no caveats and was placed in the introduction to the condition, which is highly irresponsible, malingering being the willful and deliberate use of deceit to feign illess. The author of that wording should consider that patients, caregivers and laypersons will use the entry as a resource. TauCeti2009 (talk)

(Just as an aside, I could have sworn I undid the Neurasthenia edit, but it seems I either forgot or didn't save it.)
As for the malingering text, if we're going to include a substantial amount of text on malingering, then I believe it needs to be in its own clearly-labelled section. To simply insert it into the body of the text implies that it's a given that the two are inter-linked in some way. As others have said, and I implied in my above post, malingering is deliberate feigning of illness — it's not the illness itself — therefore the weight it is given should be suitably small and it should not be randomly mixed in with the rest of the article in my opinion.
In fact, I'm wondering if this article might not benefit from being split into sections for the biological view and the psychological view, though I suppose that gets into a whole separate argument about duality and so forth, and would undoubtedly lead to its own unforeseen issues. (In other words, I'm just throwing this out there, not seriously suggesting it at this point.) --RobinHood70 (talk) 17:38, 14 August 2009 (UTC)
RobinHood70, I agree. The text in the introduction has now been changed slightly to "CFS is thought to be among the medical conditions most commonly feigned." I sharply disagree with malingering being mentioned at all in the third paragraph of the introduction - it is no more appropriate there than it would be in an article on mild head injuries or lower back pain (or in conditions such as depression and stress). It doesn't belong there except to make a linkage from the outset.
I would prefer if the pathophysiology section was merged with the main article and sections on psychological factors and pathophysiological factors were expanded. It would make for a long entry, however. TauCeti2009 (talk) —Preceding undated comment added 19:24, 14 August 2009 (UTC).

I have removed Malingering from the end of the third paragraph. I don't feel it is relevant here. I hope this is not too controversial for anyone.87.114.129.223 (talk) 21:42, 14 August 2009 (UTC)

TauCeti says "you are using a study that relates to personal injury claims to generalize to the patient group." Mittenberg study is 33,531 patients, personal injury claims only are 6,371 from them. 25-30% is estimate for general patient group. Higher estimate 38.6% is for personal injury group.
Discussed before, malingering is relavent to article when MEDRS says it can be significant portion of diagnosis for illness. CFS, Fibromyalgia, mild head injury, any article. Sources say, i quoted before, when there is not diagnostic test illness is easy for feigning. IP said, people that malinger do not have CFS. Not right always, malingering can be feigning or exagerating symptoms also malingered cases are diagnose as CFS. Examples, article Morgellons, MEDRS says, most physicians say Morgellons is new name for delusions of parasitosis, RS says, the person who made the name, their doctors thought they had Munchausen syndrome by proxy. A person that wants take out that RS can say a person with DoP or Munchausen does not have Morgellons, it is "not remotely relavent." It is wrong, it is relavent, it is MEDRS it should be in article. Wiki does not say, o i worry i will offend a person so i pretend and i ignore reliable sources.
Section about malingering, it has MEDRS sources, textbooks on malingering, MEDRS review, study from 33,000 patients not all are CFS, Australian guide-lines. There is balance, it says RS do not say, all CFS is malingered and they say most CFS is NOT malingered. It says malingering should not get suspect except when evidence of it in Australian guide-lines. People do have more MEDRS for it, pls put in. Pls do not delete relavent MEDRS.
Colds7ream said to me I should not delete RS, when i think some thing is bias, i should put in more view point from other RS. I want to ask, who is delete MEDRS, bc it is not me, it is people that delete MEDRS and say it is bloat and not relavent, it is not good reason for take out MEDRS.
I put back other MEDRS that anon person deletes, i do not want edit war about malingering. I do not say it needs be in lead, pls some person put malingering MEDRS back in article, say how they want change it and add more view points. Thx RetroS1mone talk 12:43, 15 August 2009 (UTC)
Congratulations RS, I see you've now had the article semi-protected and then just added all the unnecessary quotes and citations back again. Why O why do you keep bloating the article up with superfluous and repetitive text? Well you win... I suppose...But please do not call me a vandal..My contributions are certainly not vandalism, I am just trying to make the page more compendious and to facilitate the flow a little better..well keep on going and pump as much stuff in as you like and then make the CFS article on Wikipedia a laughing stock!!!!87.113.18.179 (talk) 13:56, 15 August 2009 (UTC)
RetroS1mone, I am not sure that you understand my objection. I'll put it this way - I'll assume, given that your edits are mostly psychological, that you are a student of psychology or have a psychology background. The better to understand me, so am I.
CFS is not the only condition which malingerers feign, as you well know. Mentioning malingering in the CFS article is fine when it is in context and backed by the evidence, but placing it in the introduction is designed to associate the condition with malingering before readers get to more detailed information. You seem to be proceeding under the assumption that if your edits are removed that you are encountering a bias against the information you are including. The introduction is not the place for malingering in any condition, medical or psychological, unless it's an article on malingering. If you introduce that information from the outset you ought to proceed with the assumption that members of the public who read it will make a connection. Is that your aim? TauCeti2009 (talk) 14:41, 15 August 2009 (UTC)
TauCeti2009: RetroS1mone's edits need to be seen in the context of the recent edit histories of the Malingering and MUPS articles as well.
87.113.18.179: Why not create a user name and carry on editing? Sam Weller (talk) 16:32, 15 August 2009 (UTC)
Hi, Yes you're correct, I will probably have to get myself a username at long last and continue editing..Thanks..87.113.18.179 (talk) 17:46, 15 August 2009 (UTC)

Retro1Simone, you say "TauCeti says "you are using a study that relates to personal injury claims to generalize to the patient group." Mittenberg study is 33,531 patients, personal injury claims only are 6,371 from them. 25-30% is estimate for general patient group. Higher estimate 38.6% is for personal injury group."

No, you're misrepresenting the data. Let me quote from the study. "Reported base rates were significantly related to the proportion of plaintiff versus defense referrals in personal injury (r=.20, p=0.14) and disability cases (r=.24, p=0.005). Patients referred by defense attorneys or insurers had higher rates of probable malingering and exaggeration. Base rates in criminal cases were significantly related to the proportion of prosecution versus defense referrals (r=24, p=.04). Rates were higher in cases referred by prosecuting attorneys. Prevalence estimates were therefore statistically adjusted to control for variance due to referral source. CORRECTED ESTIMATES (Table 3) represent the base rates of probable malingering and exaggeration in CIVIL OR CRIMINAL CASES if the effects of referral source are removed. Prevalence estimates in cases that involve LITIGATION OR COMPENSATION related to a given diagnosis are shown in Table 4.

Now let's look at Table 2: Base rates of Probable Malingering or Symptom Exaggeration by Setting. If you read this data, you will see that the rate of probable malingering or symptom exaggeration is significantly lower in medical or psychiatric cases NOT involving litigation or compensation. The highest is 11.56 percent of referrals to "rehabilitation, general, veteran's, or psychiatric hospital."

I'll make it clearer. The author states that "approximately 25-30% of patients claiming disability due to fibromyalgia, chronic fatigue syndrome, or major depressive disorder MAY perform in the range that SUGGESTS PROBABLE malingering on forced choice tests."

If you read this wording dispassionately, the nature of the complaint affects the rates of probable malingering for these conditions. Therefore, inserting "CFS is thought to be among one of the illnesses most commonly feigned" ought to contain a caveat because these the study itself states that the 25-30% rate is an approximation of patients claiming disability. Not patients seeking treatment or diagnosis, but claiming disability. Your wording is a generalization and thus it is misleading.

You are quite right that I focused on personal injury, although it does focus broadly on litigation, so I should have been clearer. To be clearer, the setting itself must factor into account when you state that CFS is thought to be commonly feigned. So, if of 11.56% of referrals to "rehabilitation, general, veteran's, or psychiatric hospital," 25-30% of patients claiming disability due to fibromyalgia, chronic fatigue syndrome, or major depressive disorder may perform in the range on forced choice tests that suggests probable malingering, then state as much. To say that it is one of the conditions most commonly feigned without caveat even in claiming disability is not reporting the data correctly. So if you use that statistic without explication, you are still generalizing where it is not merited.

You can only generalize within the context of the study, and it does not say that 25-30% of patients seeking treatment and/or diagnosis may show probable malingering, which is not the same as claiming disability. I hope I've clarified that claiming disability is as specific as being involved in litigation, which is why it is inappropriate to use broad brush strokes. For example, if I feign a mild head injury without claiming disability that is a different kettle of fish to feigning a mild head injury to obtain disability payments. That doesn't mean that 25-30% of all people with a mild head injury as a whole will feign, that is the proportion of patients claiming disability as a result of having mild head injury. This is a specific statistic related to a specific scenario, that of claiming disability, so if you assert that it is "commonly feigned" without specificity then you are misleading the reader because you are omitting necessary detail.

If you reintroduce the removed text, you need to explicate a little on this rather than make a generalized remark. Malingering can and does happen in the absence of disability and litigation claims, but again the stat you cite is the base rate for patients claiming disability and doesn't pretend to be the base rate for the patient group as a whole.

I hope I've made myself clearer, but I'd prefer not to have to do this too often. I haven't edited the article myself and have no intention of doing so. For one thing, I simply don't have the time. I appreciate that this is a contentious topic and I have no objection to malingering being mentioned in the article (although not in the introduction), as long as you faithfully and accurately report the data from a study you are using to make your assertions. Cheers. TauCeti2009 (talk) —Preceding undated comment added 18:25, 15 August 2009 (UTC).

TauCeti2009 a few questions. I don't have access to the Mittenberg study presently. Can you send it to me electronically? If you enable you e-mail through (my preferences above) I could send you my yahoo e-mail to send it to. If you can't, does the study say what proportion of the 33,531 are CFS patients, and how does Mittenberg correlate the CFS and FM patent data, are they grouped together or is CFS and FM assumed to be the same conditon for purposes of the study? Thanks. Ward20 (talk) 19:47, 15 August 2009 (UTC)

Ward20, shoot me an email and I'll send you the PDF. TauCeti2009 (talk) —Preceding undated comment added 20:49, 15 August 2009 (UTC).

TauCeti2009 and Ward20 are in illustration, why Wiki likes second sources and does not want, that editors do original research from primary sources.
First TauCeti2009 quotes are for ALL data from study. BC study had alot of people were not in highest malingering groups like mild head injury, fibromyalgia, CFS, it is higher for sub-groups then for total population from patients.
The quote "The author states that "approximately 25-30% of patients claiming disability due to fibromyalgia, chronic fatigue syndrome, or major depressive disorder MAY perform in the range that SUGGESTS PROBABLE malingering on forced choice tests." is authorS review of literature before them. There are authorS. I do not understand BOLD bc you can say same thing about CFS, there is no diagnostic test for malingering, there is no diagnostic test for CFS so it is may and suggests and probalbe.
From secondary source, McDermott and other source it is 25-30% general, higher in litigating group. RetroS1mone talk 01:34, 16 August 2009 (UTC)
RetroS1mone where does McDermott and other source say CFS is 25-30% malingering? Ward20 (talk) 02:18, 16 August 2009 (UTC)

Retro1Simone, I'm in illustration? Sorry, what?

In assessment of feigned cognitive impairment: a neuropsychological perspective by Kyle Brauer Boone the author states, and I quote, "For example, Mittenberg, Patton, Canyock, and Condit (2002) surveyed American Board of Clinical Neuropsychology members in active practice, asking them to estimate rates of cognitive malingering in personal injury, disability, criminal and medical litigation cases. The base rates for malingering averaged around 30% for patients seeking compensation or actively involved in litigation, regardless of clinical setting. By diagnostic group, surveyed psychologists estimated a 39% malingering rate in patients with fibromyalgia and a 34% malingering rate in patients with other pain/somatoform disorders. Estimated base rates for malingering were much lower for patients not seeking compensation or involved in litigation, averaging 7 to 12%.

Are you saying the authorS misrepresented previous authors when they said that the 25-30% figure was in claiming disability? Well, I guess I'll see if I can get to the authors he cites for that figure, although I wouldn't expect him to inaccurately report it. As for McDermott, if you send it to me I'll see whether you're right. It is probably not accepted because I can only find the full text via the journal website, it has few citations and without access it's difficult to verify. If you're using that for the base rate outside of a disability or other litigation setting, I would like to see it.

There are tests which can indicate malingering, actually. What's "McDermott and other source?" McDermott gives base rates of malingering for the patient group in a diagnostic setting, not a litigious one? Again, I will have to see the study myself. —Preceding unsigned comment added by TauCeti2009 (talk • contribs) 02:56, 16 August 2009 (UTC)

Update to Retro1Simone: I got hold of the McDermott article. She doesn't mention CFS at all, she mentions fibromyalgia.

Now to avoid splitting hairs over this, the exact quotation is: "For example, estimates of malingering range from 25% to 30% for fibromyalgia cases [25], with similar results found for patients malingering chronic pain [26]."

So, I duly checked out citation 25, which was this: http://www.jrheum.org/content/28/8/1892.abstract . And, as the abstract states, "A large percentage of patients with FM who were on or seeking disability benefits failed the effort tests. Only 2 patients with FM who were working and/or not claiming disability benefits and no patient with RA scored below the cutoffs for exaggeration of memory difficulties. CONCLUSION: This study illustrates the importance of assessing for exaggeration of cognitive symptoms and biased responding in patients with FM presenting for disability related evaluations."

So, it's regards patients who "were or on seeking disability benefits." Your assertion that this is a base rate for the patient group as a whole is therefore based on what evidence? TauCeti2009 (talk) —Preceding undated comment added 03:25, 16 August 2009 (UTC).

TauCeti2009, I agree with your demand for the appropriate qualifiers and caveats, to better reflect the source and relevance of the findings. I had previous questioned RetroS1mone, after I noticed that the abstract of McDermott review (PMID 17938038) does not mention CFS while the abstract of the primary source (Mittenberg PMID 12650234) only mentions "35% of fibromyalgia/chronic fatigue" I wanted confirmation that CFS was specifically mentioned, and also wanted to know how or why fibromyalgia is lumped in with "chronic fatigue" and CFS (I suspected RetroS1mone was engaging in WP:SYN). In this post [13], RetroS1mone gave two direct quotes from the full text of the McDermott paper to confirm the presence of the term CFS (in bold):
  • "...In a study of over 30,000 cases referred to 144 neuropsychologists, the most likely ailment to be malingered was mild head injury, followed by fibromyalgia or chronic fatigue syndrome, pain, neurotoxic disorders, electrical injury, seizure disorders, and moderate or severe head injury"
  • "...In particular, these cases may present as specific maladies, such as repetitive strain injury or variable limb pain (ie, in reflex sympathetic dystrophy, 'fibromyalgia, or chronic fatigue syndrome), though the bulk of the literature has focused on low back pain or pain related to the cervical and thoracic spine (especially whiplash injuries)."
I'm assuming that you have gained access to the full text, by your description of how the McDermott paper doesn't mention CFS at all. Can you confirm or deny the existence of the above direct quotes from RetroS1mone?
_Tekaphor (TALK) 05:35, 16 August 2009 (UTC)

Tekaphor, CFS is mentioned in the article, in the context cited above and cited correctly. However, the exact wording of the 25-30% mention contains no reference to CFS. The exact quotation is:

"For example, estimates of malingering range from 25% to 30% for fibromyalgia cases [25], with similar results for patients malingering chronic pain [26]."

I do apologize, as I can see how that has been read to mean that she doesn't mention it at all in the study - I meant with reference to CFS malingering base rates, as only Fibro is mentioned for that figure, as the source for McDermott's statistic was a study that only related to fibromyalgia in a rhematology journal (and again whose findings in symptom exaggeration were highly specific to disability claims). It would seem that Retro believes that CFS and FM are the same thing; there's no other reason to cite an fibro stat as a CFS stat.

Off topic slightly, she does say :

"In the aforementioned study of 144 neuropsychologists [23], estimates of malingering varied by referral type. When the referral was made secondary to a personal injury claim, estimates of malingering were 30%; for disability or worker’s compensation cases, estimates were as high as 33%. Malingering was estimated in 23% of individuals facing criminal cases. In contrast, the estimate was only 8% for cases without any known external incentive. When patients were in litigation, the neuropsychologists estimated that 41% referred for mild head injury were malingering, as compared with 37% for fibromyalgia and 33% for pain. They also determined that when patients were referred by defense attorneys for civil cases, estimates for malingering were even higher. These results suggest that, in contrast to malingered mental illness, which more often occurs in the context of criminal charges to reduce or eliminate sentencing, the malingering of physical illness is substantially related to financial incentives." This concedes the point I was making earlier in criticism of generalization of base rates to the patient group in the Mittenberg study.86.161.52.112 (talk) 07:43, 16 August 2009 (UTC)

I agree on TauCeti or IPs or who ever they are, they convince me, Mittenberg conclusion for general patient population is difficult, we should say "patients referred to neuropsychologists" bc Mittenberg does not say break-down for general. Second sources which say general, do they know more then us about Mittenberg? I do not know. We are to have weight on second sources, and when we think second source is wrong bc we did original research? It is interesting question bc second sources can be wrong, i wonder, it is ok on Wiki, do original research when you want prove a primary or second source wrong? I can ask, but my opinion, TauCeti is right so i add caveat and replace the MEDRS.
"It would seem that Retro believes that CFS and FM are the same thing; there's no other reason to cite an fibro stat as a CFS stat." My opnion is not, CFS and FM are same thing. My opinion is, a notable view point in literature is, CFS and FM are same thing or large overlap. I say before, I do not know what is CFS and what is FM. The literature does also not seem to know what is CFS and FM, where they are the same and different. Some authors of MEDRS papers believe CFS and FM are the same thing. Example Mittenberg et al have CFS and FM together. You disagree. Ward20 disagrees. I do not have opinion, but I know this is a view point in MEDRS which some editors ignore and try to delete. RetroS1mone talk 09:13, 16 August 2009 (UTC)

Aye, that was me Retro1Simone, for some reason I wasn't signed in when I made that comment. Well, glad we've sorted it out. There is some opinion on CFS and FM being the same, most notably in the case of functional somatization/functional somatic syndromes. There is some symptom overlap, but treatment differs. In the UK, patients with CFS are not generally given the medications listed here: http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx and you need the trigger points for FM. The CFS entry doesn't actually list any medications, how strange. Still, at this point I believe they're often diagnosed and treated separately even though theoretically, the jury's out on whether FM and CFS are sort of different "flavours" of the same condition. TauCeti2009 (talk) —Preceding undated comment added 10:56, 16 August 2009 (UTC).

Thx TauCeti, i will not edit article for some while, may be you and other people decide how to write it in. You are right, medication should be in article from MEDRS. Other improvements, the Pathophysiology or Pathophysiology hypotheses part does only have psychiatric now, there should be more. I take a break now. Bye. RetroS1mone talk 17:08, 16 August 2009 (UTC)

Mechanism hypotheses

I changed mechanism title to Mechanism hypotheses. Every MEDRS review says, cause is not known. Many hypotheses, cause is not known. General ideas, cause is not known. Mechanism is not known. Anon IP that keeps changing IPs is changing it like they are changing alot of things. Why?? RetroS1mone talk 12:49, 15 August 2009 (UTC)

I agree with the "hypotheses" wording, though there's something about the title that just overall sounds a little "klunky". Now that the article is semi-protected, I've put the word back in. If anybody can think of a better title, by all means please change it. If there's some reason to object to it, post here and we'll try to find something that works for everyone. --RobinHood70 (talk) 18:03, 15 August 2009 (UTC)
Changed to reflect main article - Pathophysiology. Sam Weller (talk) 19:49, 15 August 2009 (UTC)
Main article should be changed to reflect reality. it is Pathophysiology hypotheses, every MEDRS says pathophysiology is not known. RetroS1mone talk 01:35, 16 August 2009 (UTC)

RetroS1mone, why does it matter to you whether it's called pathophysiology or pathophysiology hypotheses? Since the aetiology is not known, why not rename psychological and social factors to psychological and social hypotheses? It's not a big deal, but why should one require hypotheses and not another? TauCeti2009 (talk) —Preceding undated comment added 03:00, 16 August 2009 (UTC).

It matters to me for accuracy bc in comparing w conditions like cancer, the pathophysiology is not known. Hypotheses should have name Hypotheses. It does not matter to me, titles in this section can have hypotheses in name or not, they are all under Hypotheses but it does not matter to me. RetroS1mone talk 16:55, 16 August 2009 (UTC)

Original research in Classification?

"Doctors with the National Health Service in the UK are discouraged from using this case definition, since requiring the presence of these signs could exclude patients.[14]"

On page 146 the guideline describes The 2003 Canadian definition as more stringent. I can find where 3 guideline reviewers didn't recommend the Canadian criteria pg 152, and later a discussion about excluding patients and falsely including patients on page 169. But nothing that states the material above.

I also realized they didn't critique the CDC 1994 criteria but would recommend the Australian 2002 definition. I believe the Australian 2002 definition should be added to the Clinical descriptions of chronic fatigue syndrome article. Ward20 (talk) 01:54, 16 August 2009 (UTC)

RetroS1mone's recent edit [15] appears to be more WP:SYNTH

RetroS1mone reverted my edit back to, Doctors with the National Health Service in the UK are discouraged from using this case definition, since requiring the presence of these signs could exclude patients,[5] and the criteria "have not been evaluated for research purposes."[6] which states in part not to use this case definition because the criteria "have not been evaluated for research purposes". Neither source supports this material so it's textbook WP:SYNTH "Do not combine material from multiple sources to reach a conclusion not explicitly stated by any of the sources." RetroS1mone the burden is on you to justify that one of the sources support the material and they simply don't. Additionally, the first part of the sentence is WP:OR as described in the section above and must be justified by you as I believe you added it (and I don't believe it can be justified by the source) so the edit is completely against policy. Ward20 (talk) 10:16, 16 August 2009 (UTC)

The first source [16] states on page 152 that they "would not recommend" the Canadian 2003 guidelines, and page 169 implies that the Canadian 2003 criteria may not "accurately identify people who have CFS/ME" because the cause(s) are unknown; it does not talk about "signs" or direct discouragement. The second source [17] says "We decided not to use the recently published Canadian criteria [34], as these have not yet been validated for research purposes." To avoid WP:SYN, this sentence should be separated from the first source (rather than just by a comma). How many criteria have been "validated for research purposes" anyway? While the NICE guidelines appear to recommend a few guidelines, it actually states on page 168 that "The GDG reviewed the existing diagnostic criteria, but did not consider them particularly helpful in clinical practice when making a definitive diagnosis or managing the condition." - Tekaphor (TALK) 12:14, 16 August 2009 (UTC)
I agree, Tekaphor is right, the sentence should be separated bc it has two meanings how I wrote it. The first part is not OR but I agree w Tekaphor, not recommend is better then "discourage." Thx RetroS1mone talk 16:57, 16 August 2009 (UTC)
But where does "Doctors with the National Health Service in the UK are" come from? Because 3 reviewers in the NICE guideline said they would not recommend the Canadian criteria in a critique section of various guidelines? How does that actually translate to apply to all doctors with the public heath service in the UK?
Tekaphor brings up some interesting points. The issue is taking wording from different sections to try to integrate what we believe the guideline states absent an unambiguous statement in the source. For example on pg 168, "The GDG reviewed the existing diagnostic criteria, but did not consider them particularly helpful in clinical practice when making a definitive diagnosis or managing the condition." Does that mean we should put in a caveat that NICE does not recommend the Canadian criteria, the CDC criteria, and the Oxford criteria?
I am having not so much difficulty with some these small points as they are trivial when taken on their own. But throughout the article, there appears to be a disturbing pattern of synth. poorly attributed or incorrect material to advance a POV. Edits meant to correct issues are often reverted or discussions often stonewalled. I hope that does stop. Ward20 (talk) 20:55, 16 August 2009 (UTC)

POV semiprotection

RetroS1mone obtained semiprotection by accusing a (dynamic?) IP of vandalism. Retro is now blocked for "Disruptive editing, personal accusations, ignoring WP:AGF & admin shopping, amongst other things", so can the restriction be lifted? In general, a user who makes appropriate edit summaries and contributes politely to the talk page is not a vandal by any stretch of the imagination. IP anonymity is irrelevant since a WP user name is equally anonymous, and does nothing to establish real world credentials as an encyclopedist. Sam Weller (talk) 11:59, 16 August 2009 (UTC)

Hi, just a quick line in reply to what Sam has said. I made the edits in all good faith, and have participated in talk page discussions. I was not being contrary in anyway. I admit my IP changes quite often basically because it is just that, a dynamic address. I was and still am interested in maintaining the quality and integrity of this article and all Wikipedia articles in general..Best wishes.,87.114.154.135 (talk) 12:19, 16 August 2009 (UTC)

Why not get a username? It will give your edits more credibility than a random dynamic ip. We have had lots of problems in the past with ips making POV edits on this page - the semiprotection does help a lot. --sciencewatcher (talk) 14:31, 16 August 2009 (UTC)
I am unblocked, unblocking admin wrote "The block seems to have no legitimate justification, especially given its length and timing" User_talk:RetroS1mone#Unblock_request. I am very sorry, when vandal is wrong word, i think a person should not delete MEDRS and the protecting admin i think agreed.
I now take a break from this article, may be all Wiki, may be i do not return, i am not making up my mind yet, two people suggest it now and it is good for the article i think bc every thing is about me now, it should not be so. RetroS1mone talk 17:04, 16 August 2009 (UTC)
Further to sciencewatcher's input, above, the other common reason for IP edits is that it's a regular user who has logged out because they don't want their edits to be traced back to them - they can simply disappear if their edits are considered undesirable. I'm not saying (or even implying) that that's the case here, I'm just saying that people tend to get suspicious when IP edits are made to controversial articles - all the more so when sourced material as being removed. So from that perspective, I think short-term semi-protection was the way to go, simply to decrease any perception of controversial edits.
As the IP has said himself, his edits and participation on the talk page would tend to indicate that he's operating entirely in good-faith, and probably the easiest way around the semi-protection is simply to create an account. The more regular editors we have, the more balanced the views will be...or so goes theory, anyway. :) --RobinHood70 (talk) 18:50, 16 August 2009 (UTC)
Since the editors involved have talked amicably and agreed that it wasn't vandalism I have requested Unprotection Ward20 (talk) 22:33, 16 August 2009 (UTC)

Neurasthenia presumed psychological edit

The parenthetical addition of Neurasthenia being presumed psychological was taken from the alternative names article. I took it on faith that the source was correct, which was perhaps a bad idea. It's not hot-linked, so I don't know if it's available online. I'm on my way out right now, but will try to look later this afternoon if nobody's responded with a "yay" or "nay" before then. --RobinHood70 (talk) 19:13, 16 August 2009 (UTC)

It's not just the psychological presumption that's problematic. The discussion at alternative names raised various problems such as the retrospective equation of CFS with the historical diagnosis of neurasthenia, and with the citation itself. They are unresolved. I think a speculative association with an almost defunct title is inappropriate in the lead of the main article. Sam Weller (talk) 19:45, 16 August 2009 (UTC)
And the point should be elaborated and described in the body text, not just appear in the lead. If it's a substantive point that is well-accepted, it should be easy to source (the lack of a source was the reason I removed it) and add something substantive to the lead. If it's an obscure, minority point that's not well-represented in the medical literature, it certainly shouldn't be in the lead (which brings in WP:LEAD and WP:UNDUE). WLU (t) (c) Wikipedia's rules:simple/complex 20:04, 16 August 2009 (UTC)
Thanks Sam & WLU. I wasn't aware that it was under discussion in the alternative names article - I've only just recently started watching that article. In that case, I'll leave it to that discussion to figure out what's appropriate. --RobinHood70 (talk) 20:40, 16 August 2009 (UTC)

Copyright, Fair use and Fair dealing

Questions about the legality of sharing papers for research here have been raised several times. This discussion clarifies things: [18] Sam Weller (talk) 10:26, 17 August 2009 (UTC)

The removal of "learned illness behavior" text and citation

I've removed the entry about "learned illness behavior" and source from the "Psychological and social factors" section. I removed it a few days ago as I felt it, with a number of other insertions, bloated the article with unnecessary and repetitive entries and citations. Yes I know I've deleted a MEDRs reference but there is such a thing as common sense. If there is a strong consensus that it shouldn't have been removed or this quote and citation is demonstrably essential for the article then by all means replace it. Hope this hasn't been too contentious..87.113.100.191 (talk) 14:56, 17 August 2009 (UTC)

I think to remove this you should propose it and await consensus, especially as you were reverted. WP:BRD. Hence, I will put it back and we can see what the consensus is. My view is it is a MEDRS and adds to the article. Verbal chat
I would agree with Verbal on this one. It's not something that's mentioned elsewhere, and I see a distinct difference between childhood abuse and learned illness behaviour. Also, really looking at it, I think the "lack of support" sentence definitely needs to be a sentence on its own, as I think it changes the meaning when it's linked to the previous sentence.
I do agree with the "Some research suggests" wording, though. To leave it out makes it sound like an established fact, and we all know that there's almost nothing about CFS that's an established fact. :) Even with my minimal experience looking at various ME/CFS sites, I know that many of them support very gradually-increasing exercise as a means to slowly improve symptoms. The sickest patients, however, don't seem to always get this benefit - whether this is a case of not reducing their exercise limits enough or whether there's something else at play, I couldn't say. Yes, this is a patient's view and the views of patient-oriented or patient-run sites, but clearly there isn't universal agreement on this. To try to cite all this and get into A vs. not-A arguments would probably introduce far more bloat into that section of the article than is necessary..."Some research suggests" is more than enough for me. Any arguments against exercise should be (and are) left under the GET section, where it's more appropriate.
Also, have these references (the Prins and Dreary ones for the paragraph mentioned above) been verified? I seem to remember that they have, but just wanted to make sure, because the abstracts of each don't really mention significantly-related issues.
What I see as a larger issue is the structure of the section itself. In the first paragraph, we've got one issue and then a response to the issue; then we have a completely different issue (learned illness behaviour); after that, we move to another issue, but then in that same paragraph, we come back to illness behaviour at large. Also, I'm not sure "Psychological and social factors" is an appropriate title - "Psychosocial factors" would probably be more appropriate, since we're talking about the combined effects of social environment on a person's psychological makeup. It's also perhaps a bit confusing, since we later have a "Social issues" section (which I think should probably be merged with the sections under it, or perhaps make them 3rd-level headers, but that's probably a different discussion). --RobinHood70 (talk) 18:58, 17 August 2009 (UTC)
I agree with RobinHood, "Psychosocial factors" would be a more appropriate title and distinguish it from other sections better. And you're right, the section goes back an forth from risk factors to perpetuating factors back to risk factors. The selection of risk factors seems rather arbitrary and Hempel's review of risk factors PMID 17892624 is not mentioned. That material needs some work to organize it properly. There should be a physiological factors section in Pathophysiology. Some recent reviews have been identified PMID 19127706 [19], maybe some material could be organized from these and the main article. Ward20 (talk) 19:26, 19 August 2009 (UTC)

The article material, "Some children who have grown up with a sick parent may be predisposed to CFS because "learned illness behavior" may influence the later development or response to CFS.[20]" is not supported by the reference.

From article: "Genetics and early experience: This is one of the least researched parts of the model." "There is also some evidence that certain types of early childhood environment increase the risk of developing MUS. Hotopf (2003) reported that childhood experience of paternal illness could be a risk factor, and highlights the possibility that vicariously learned illness behaviour could later serve to perpetuate symptoms (see also Hotopf, Wilson-Jones, Mayou, Wadsworth, & Wessely, 2000). This may also explain Fisher and Chalder's (2003) observation that adult CFS sufferers report their parents as having been overprotective; there is some evidence for this learned illness behaviour in IBS (Lackner, 2005)."

(Note: Fisher and Chalder's study had 36 CFS patents. Hotopf (2003) is a commentary on another study, not about CFS. (Hotopf, Wilson-Jones, Mayou, Wadsworth, & Wessely, 2000) is a study not about CFS or even fatigue. Deary et al is a "narrative review of the theoretical standing and empirical evidence for the CBT model of medically unexplained symptoms (MUS) in general and for chronic fatigue syndrome and irritable bowel syndrome in particular", written in hypothetical wording.) In total this material is WP:SYNTH, from this source anyway.

The childhood abuse stuff is misleading the way it's worded. The reader would assume sexual or physical abuse is the major topic, but most of the sources discuss childhood trama in which sexual or physical abuse is a subset, and in the case of sexual abuse is not often found.

The Prins stuff should be attributed and not presented as absolute. The "social networks" wording is vague and misleading, Prins states, "Other perpetuating CFS factors that have been identified are social processes ranging from solicitous behaviour72 to lack of social support.73 Illness perceptions and illness behaviour can be reinforced by people in the patient’s environment, such as a partner or family.74–76"

Other material is inaccurate to the source, but I haven't finished researching. Ward20 (talk) 20:08, 17 August 2009 (UTC)

DEARY PMID 17822818
A number of researchers have reported evidence that childhood adversity in the form of physical or sexual abuse is a risk factor for MUS in general (Fiddler, Jackson, Kapur, Wells, & Creed, 2004), IBS (Hazlett-Stevens, Craske, Mayer, Chang, & Naliboff, 2003; Lackner, 2005), CFS (Taylor & Jason, 2001), fibromyalgia (Walker et al., 1997) and somatisation disorder (Morrison, 1989). This may be linked to the sensitisation mechanisms discussed below. The large scale longitudinal studies that would allow for more robust conclusions are lacking.
NB. Deary’s own reference for the CFS abuse claim is … Taylor & Jason, who did not find a correlation with CFS? Sam Weller (talk) 20:17, 17 August 2009 (UTC)
Yea, Deary must be confused with some other MUS condition. Where was the peer review on that one? Ward20 (talk) 20:33, 17 August 2009 (UTC)
I see where the problem is. Deary first talks about MUS in general. When referencing Taylor & Jason, he uses the term CFS in front of their study which is inaccurate. If he would have used CF for chronic fatigue which I suppose would fall into (MUS) he would have been accurate. This shows how difficult it is to pick passages from a conceptual review of a vaguely defined range of conditions to try to describe specifics in the article. Ward20 (talk) 18:29, 19 August 2009 (UTC)
I agree. The abstract for the Taylor & Jason study (PMID 11708672), which is cited earlier in that same section, clearly states that a link was not found with CFS, only with other forms of chronic fatigue, so Deary clearly got that one wrong. —RobinHood70 (talk • contribs) 23:22, 19 August 2009 (UTC)

I've no objection to "illness behaviour" being used as it is a viewpoint. I can see why it's contentious, but there's more than one way of looking at it. "An extended concept of altered self: chronic fatigue and post infection syndromes" Psychoneuroendocrinology (2007), doi: 10.1016 /j.psyneuen.2007.11.007 might be a bit technical, but as a hypothesis "Persistent illnesses such as CFS and post-infection fatigue are due to maladaptive biological (interoceptive) and/or cortical signal recognition or subsequent responses to them." Fundamentally, psychology is biology, so focusing on cognition and behaviour isn't my personal cup of tea, and the warring perspectives are probably indicative of "Where we're at" in understanding the links between them. But if you prefer an explanation rooted in the brain, that paper is a nice complement to the "illness belief" angle. TauCeti2009 (talk) —Preceding undated comment added 04:00, 18 August 2009 (UTC).

I agree with Ward that Deary's Hotopf citations don't signify here. In the interests of accuracy I've removed the Deary citation of Taylor & Jason for childhood abuse risk as they state very clearly in their abstract that it was not a risk factor for CFS. I've left the recent source - Hempel citing Heim. But trauma and adverse experiences (including neglect etc) are their terms.
Under CBT, I removed Deary's name because researchers are not usually named unless they've done something outstanding or controversial, and anyway he is a CBT therapist & MUS researcher, not a CFS researcher. I've left the rest of the meaningless sentence as it stands. It is nevertheless a hopelessly garbled version of "We conclude that a broadly conceptualized cognitive behavioural model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value." (abstract). Whether it belongs here is another matter. In MUPS I would have thought. Sam Weller (talk) 10:06, 18 August 2009 (UTC)
No problem with "illness behaviour" as a sourced viewpoint. The problem is the article sentence about "learned illness behavior" is a synthesis from all types of illness behavior described in the Deary MUS article. The only CFS article cited in the that section in Deary's paper, PMID 12726900 "did not find an association between exposure to early illness and CFS", only to "maternal overprotection" and "depression". So the article says the exact opposite of the reference for the cited source. If material in the article is fabricated to say the opposite of the sources, well that's not WP:NPOV or WP:V. Ward20 (talk) 20:09, 19 August 2009 (UTC)
cfs + 'learned illness' yields zilch on Medline. Delete. Sam Weller (talk) 22:14, 19 August 2009 (UTC)
Yeah, I didn't find any linkage between the two, either. The MUS linkage is quite clear in the document, but there's no specific linkage with CFS at all; to find one is a synthesis of "CFS is MUPS" with Deary's material. Move it to MUPS, if it's not already there. —RobinHood70 (talk • contribs) 23:22, 19 August 2009 (UTC)

Current Opinion in Psychiatry (Journal)

Is Current Opinion in Psychiatry a MEDRS? I found an article, PMID 19127706, which I think would have a lot of bearing on the subject of CFS, but I'm obviously concerned, given that it's such a strong statement against the psychiatric view of CFS, that it may not be MEDRS. After all, if we were that sure of CFS being biological, we wouldn't be having these debates. :) --RobinHood70 (talk) 19:39, 17 August 2009 (UTC)

I believe it would just have to be attributed properly. Ward20 (talk) 20:13, 17 August 2009 (UTC)
Many thanks for the review, Rob. Current Opinion journals are all peer-reviewed and devoted to invited reviews of current research. MEDRS without a doubt. The annotated reference list is a useful guide to studies that should be included here, e.g. he calls the gene expression paper by Kerr 2008 (mentioned by TauCeti above) a 'landmark study'. Sam Weller (talk) 00:47, 18 August 2009 (UTC)
Is that the paper co-authored by Wesseley? I think it would be useful to add, yes. It still sees the condition as functionally somatic but there is no argument on the existence of abnormalities and call for more research. I liked it myself because I think it reflects a gradual melding of approach. TauCeti2009 (talk) —Preceding undated comment added 03:18, 18 August 2009 (UTC).
I didn't see Wessely's name on it. The only author listed in the PubMed abstract was Maes M. --RobinHood70 (talk) 03:33, 18 August 2009 (UTC)
Ah, I see. I was referring to "Chronic Fatigue Syndrome: an update focusing on phonemenology and pathophysiology" which is viewable here: http://www.cfids-cab.org/rc/Cho-1.pdf . TauCeti2009 (talk) —Preceding undated comment added 04:05, 18 August 2009 (UTC).
Thanks, TauCeti, that was a very interesting read overall (though not being a med student of any flavour, much of it was over my head). I found the difference in HPA Axis between CFS and Fibro really interesting, and something I hadn't heard of before...especially the fact that the two conditions seems to cancel each other out in terms of HPA involvement. --RobinHood70 (talk) 21:43, 18 August 2009 (UTC)
Yes an interesting article indeed, very good info on pathophysiology. As I recall, a while back there was a lot of discussion on the white matter topic. I wonder if it's in the article now? Wessely et al seems to be moving slightly toward the direction of splitting instead of lumping. I noticed in this article that (MUPS) didn't come up at all.Ward20 (talk) 22:30, 18 August 2009 (UTC)
FSS is just another name for MUPS. Without objective physical tests for diagnoses, psychiatric nomenclature is as subject to fashion as hairstyles. Sam Weller (talk) 08:13, 19 August 2009 (UTC)

I was about to include a link to the research database at ME Research UK, but received the warning "BEFORE inserting new links here you should first post it to the talk page, otherwise your edit is likely to be reverted". Any objections? I think a database of 3000+ papers (to July 2009), archived by a serious charity that funds biomedical research into ME, will be a useful addition to the article. Sam Weller (talk) 16:50, 19 August 2009 (UTC)

If it's strictly about the biology side, I'd label it as such, but if it's appropriately-balanced, then I'd say go ahead and put it in without any qualifiers. —RobinHood70 (talk • contribs) 17:49, 19 August 2009 (UTC)
Done - it's comprehensive.Sam Weller (talk) 18:42, 19 August 2009 (UTC)

doi:10.1017/S0033291707001602

doi:10.1017/S0033291707001602 does not say "there are no clinically meaningful risk factors." It says studies they reviewed did not reveal risk factors but the systematic analysis found significantly associated risk factors in final model. They are saying, you can not say, did you have childhood trauma, OK, you will have CFS!! Duh. But it is significant associated "in the final predictive model." People are trying on saying, this review says, no clinical meaning so childhood trauma or neuroticism is not associated, that is OR and it is not what source says.

BC some people like read abstract and not paper, here is quote, "The existing literature shows that a large number and a great variety of potential risk factors for CFS/ME have been assessed. However, the included studies did not appear to reveal risk factors that are evidently useful for clinicians in assisting them to establish a diagnosis for patients presenting with potential symptoms of CFS/ME. Significantly associated with the development of CFS/ME in the final predictive model were: older age, being female, low or middle rather than high educational level, father in professional/managerial occupation in childhood, presence of an anxiety disorder, mood disorder (pre-morbid or 2 months post-infection), emotional instability, childhood trauma, history of allergies or asthma, long-standing limiting medical condition aged 10 years, sick certification after viral illness, low fitness 2 months post-infection, no sport in spare time at 10 years old, lower physical functioning at baseline assessment, exhaustion, presence of fatigue at time of viral illness, fatigue severity, days spent in bed at onset of an infection, visits to GP or occupational physician, musculoskeletal pain, poor self-rated health, higher scores on malaise inventory at 30 years, stress, psychological symptom attribution, other family members with symptoms of CFS, recent ingestion of raw milk and belonging to a general rather than a student primary-care sample." RetroS1mone talk 23:27, 10 August 2009 (UTC)

I agree with RetroS1mone on this one. While the full list of risk factors is obviously too long to insert into the article and still have it be meaningful (at least in my opinion), I think the abbreviated list that the CDC uses would be a useful addition to the article. Also, as has been noted, some of the findings in the longer list are contradicted by other studies. I believe all the CDC's risk factors are uncontroversial. --RobinHood70 (talk) 23:38, 10 August 2009 (UTC)
No one ever said "no risk factor was identified", but that these wouldn't be meaningful for clinicians (to identify people at risk of developing CFS within clinical practice). I'm guessing this is in contrast to people who present to their doctor with very high blood pressure and very high cholesterol; action would be taken to prevent stroke. The full-text says "The existing body of evidence is characterized by factors that were analysed in several studies but a significant association was not replicated in more than two studies, or by studies that showed significant associations of factors that no other study analysed." and "However, the identified characteristics seem to be either common occurrences in people with or without CFS/ME or not sufficiently specific to CFS/ME, so it remains unclear whether health-care professionals could use these as a prognostic flag in clinical practice." - Tekaphor (TALK) 02:54, 11 August 2009 (UTC)
The expression 'final predictive model' refers to the method used in the primary studies, not the systematic review. Hempel et al did not predict anything. What they found was that many risk factors were assessed in the primary studies. They went on: "The existing body of evidence is characterized by factors that were analysed in several studies but a significant association was not replicated in more than two studies, or by studies that showed significant associations of factors that no other study analysed." Because of the lack of generalizability, they said the factors are 'not useful for clinicians in assisting them to establish a diagnosis for patients presenting with potential symptoms of CFS/ME". That's what "not clinically meaningful" (or clinically relevant) means.
By the way, the ridiculous list of unreplicated risk factors currently padding out the Psychological section (summary, remember) contains many non-psychological factors such as infections. That's why I removed the reference from there. Sam Weller (talk) 13:48, 11 August 2009 (UTC)
Once again, Prins 2006 is not a systematic review. Sam Weller (talk) 15:29, 11 August 2009 (UTC)
Who said, Prins2006 is a systematic review. A list of significantly associated factors from 2008 recent systematic review is not "ridiculous list." Risk factors in two studies are not "unreplicated." Why a quote list from source is "padding???" Why are people so upset to use this uncivil words from a quote in a MEDRS recent systematic review?? Thx RetroS1mone talk 03:13, 12 August 2009 (UTC)
After your editing, the Psych section now includes a lengthy list of psychosocial and physical risk factors found in one or two primary studies. Hempel et al did not validate them, and said they were not clinically useful, but you deleted that important conclusion from a secondary source. (And remember Hempel is not even mentioned in the main Path article, which this is supposed to summarize.) Prins 2006 is now stated to be a systematic review, when it is not. The actual source for the neurotic and introvert 'report' is Prins 2001 - which is not recent or systematic, and which nobody can access as it is in a nonMEDRS, nonMedline Dutch source. You selectively altered van Geelen's findings: that the immediately preceding neurotic and introvert claim could not be validated. Sam Weller (talk) 12:18, 12 August 2009 (UTC)
Main path article is a primary source fork no person reads, no such thing for most medical articles. Hempel includes many psychosocial risk factors, i will write summary for them. It did not say they were not clinically useful it was not so strong, it is your interperetation. Prins 2006 is not a systematic review. Wiki does not make distinction, systematic review and systematic scoping review and systematic review with 11 sources and ten pages, they are MEDRS reviews, it is not interesting for encyclopedia. Wiki does care only about MEDRS reviews and experts writing them, we do not do OR and find, what is authors source and do i agree with it and did I replicate experiment and is it in dutch or japanese, that is for scientists and doctors we are editors. RetroS1mone talk 02:36, 13 August 2009 (UTC)
Regarding Hempel et al 2008: the abstract conclusion states: "...definitive evidence that appears meaningful for clinicians is lacking" and the full-text states: "...the included studies did not appear to reveal risk factors that are evidently useful for clinicians in assisting them to establish a diagnosis for patients presenting with potential symptoms of CFS/ME". The closest resemblance to the "usefulness" of the identified risk factors is on page 10: "While it does appear that the identified factors cannot be used easily in clinical practice to specifically identify those people presenting with early suspected CFS/ME symptoms who will progress to develop CFS/ME, it is noteworthy that several characteristics could be addressed clinically and do not represent perpetuating or untreatable factors." (followed by an example). It looks like we have a similar situation to the one presented by the systematic review on personality: that is, there may be some trends but "definitive evidence" is lacking. RetroS1mone has now expanded on these risk factors, but also removed all caveats.
RetroS1mone also claims that most medical articles do not have subarticles; I would like to see evidence for this, involving medical conditions that are roughly as well-known, prevalent or researched as CFS. When using http://stats.grok.se it appears that last month (July 2009) the main CFS article received 66427 hits while the CFS pathophysiology sub-article only received 651 hits (roughly 1%). This only makes it even more important that the main CFS article's Mechanism section is "corrected" for the disproportionate bloat that has been edited into it this year. Also, FYI, Wikipedia does make a distinction between systematic reviews and literature reviews, and the MEDRS guideline prefers the former. - Tekaphor (TALK) 06:35, 13 August 2009 (UTC)

Respect secondary sources "Individual primary sources should not be cited or juxtaposed so as to "debunk" or contradict the conclusions of reliable secondary sources."

Summarize scientific consensus "Make readers aware of any uncertainty or controversy."

Assess evidence quality "The best evidence comes from meta-analyses of randomised controlled trials (RCTs), and from systematic reviews of bodies of literature of overall good quality and consistency addressing the specific recommendation. Narrative reviews can help establish the context of evidence quality. ... After enough time has passed for a review to be published in the area, the review should be cited in preference to the primary study."

Use up-to-date evidence "Prefer recent reviews to older primary sources on the same topic."

I'm very happy with all of those guidelines, and most of the editors here seem to be as well. Any dissent? Sam Weller (talk) 08:30, 13 August 2009 (UTC)

Alzheimers and MS have multiple subarticles just like CFS. Even so, they are both much longer (140 & 87 kb) than CFS (61 kb), and the edit header suggests splitting them even further. Sam Weller (talk) 20:06, 15 August 2009 (UTC)
ADHD has a total of 10 subarticles, though I think that some of them would qualify as POV forks from cursory examination. --RobinHood70 (talk) 20:20, 15 August 2009 (UTC)

Moved general discussion on merging subarticles to new section. Sam Weller (talk) 11:39, 20 August 2009 (UTC)

Automatic archiving

Given how much discussion we go through on this talk page, would anybody object if I set this up to auto-archive using MiszaBot I? I suspect it would save us a whole lot of time.

Looking over the possible options very quickly, I'm thinking either incremental or date-based archives. I can see arguments for either. I'd also suggest a delay time of 7 or 14 days.

Also, on a related topic, should I merge Archives 11 and 12? I created them both to get some of the bulky old discussions out of the way, but looking at their size compared to previous ones, it looks like they're much smaller and should probably be merged. If we get Misza running, this will be less of an issue, as it'll pull stuff out and put it into the correct archive automatically as they become stale. --RobinHood70 (talk) 04:13, 18 August 2009 (UTC)

OK by me. Ward20 (talk) 02:00, 19 August 2009 (UTC)
Would archiving prevent delayed responses? There were gaps of a month in the first two discussions on this page:[21] [22] Sam Weller (talk) 08:41, 19 August 2009 (UTC)
It wouldn't prevent it per se, but it would certainly strongly discourage it, since the topics would be removed automatically after they'd been stale for however many days we set. —RobinHood70 (talk) 17:32, 19 August 2009 (UTC)
Since nobody's expressed dissent, I'm going to go ahead with this. —RobinHood70 (talk • contribs) 20:16, 31 August 2009 (UTC)
Woohoo! MiszaBot I is now functional on our page! Does anybody feel the need to add an auto-archive notice to the various banners at the top of the page? On the one hand, I think it's appropriate to let new users know, but at the same time, I think the top of the page is cluttered enough and that most people will probably figure it out. Second opinions? —RobinHood70 (talk • contribs) 02:36, 6 September 2009 (UTC)

Merging 'main' subarticles

Moved from doi:10.1017/S0033291707001602[23] In view of the not very startling statistic that the 'main' Path article received 1% of the hits, is it time for a rethink on the role and function of 'main' articles that are really distant satellites, rarely visited, and not coordinated very well with the main event? Anyone reading the Path section here in the last few months would have concluded that there was a lot of speculation about organic aspects, but there was really hard evidence of psychological abnormality. Absolutely untrue, but why read further? Perhaps the linked sections here should really be stripped down (like the first section of Path, before it was hijacked) forcing readers to the satellite, or the satellites should be rigorously edited and brought here. Any thoughts? Sam Weller (talk) 08:33, 19 August 2009 (UTC)

While I'm generally a proponent of merging sub-articles into the main article, I don't believe in doing so when the sub-article is exceedingly long, as is the case with the Pathophysiology article. Given that psychosocial aspects are already mentioned in the section lead (with equal weight to several other hypotheses), I would say that the information in the current Psychosocial factors section should be merged into the Pathophysiology article and stripped out of this one. —RobinHood70 (talk • contribs) 22:44, 19 August 2009 (UTC)
Now the OR and SYNTH has been deleted, it's nearly all in the satellite already. Need to check before deleting here. Agreed about Patho, What about shorter satellites, like naming, history? Sam Weller (talk) 11:43, 20 August 2009 (UTC)
Looking at Attention-deficit hyperactivity disorder it seems to be typically viewed about 4.5k times per day. Attention-deficit hyperactivity disorder management seems to be typically viewed about 0.15k times per day, seems about typical for sub articles. I have always surmised the majority of people simply read the lead of most articles. If people want specific information in the sub-articles they will have to follow the links. But they do that type of research on the internet anyway. I believe the main article could use some better organization, more balanced viewpoints, and better linking to the sub articles. We could run tests, bringing material from one sub article into the main article or vice versa. We could try different formatting or linking schemes and see if daily traffic changes on the main article or sub articles. Ward20 (talk) 12:48, 20 August 2009 (UTC)
I wouldn't worry too much about traffic statistics. I think it's best just to present the information in a reasonably logical format. As you say, most people will start here, and only link to the subs if they need the information. —RobinHood70 (talk • contribs) 19:02, 20 August 2009 (UTC)
Okay, I've moved the Psychosocial factors to the Pathophysiology page. I sectioned each hypothesis off, which leaves several of them a little bare. We should either figure out a way to organize/combine some of them, or fill them out a bit more. Other than moving the neuroticism bit to what I thought was an appropriate section and fleshing out the intro a tiny bit so it didn't sound quite so abrupt, I left the text from this page intact. I would suggest any further discussions about those sections be moved to the Pathophysiology talk page. —RobinHood70 (talk • contribs) 23:43, 20 August 2009 (UTC)

US bias

IMHO the content of the current page is heavily weighted towards US experience, nomenclature etc.

1. "CFS is thought to have an incidence of 4 adults per 1,000 in the United States.[7]"

I would suggest the addition of some stats from other countries, including:

"The UK's ME Association estimates that some 250,000 people in Britain are affected." Reference - http://www.meassociation.org.uk/content/blogcategory/38/173/

Yes this is only an estimate. But so are the figures for the USA ("CFS is thought to have...")

2. "The most commonly used diagnostic criteria and definition of CFS for research and clinical purposes were published by the United States Centers for Disease Control and Prevention (CDC)."

Commonly used by whom and where? I feel this statement represents US but not international experience, and suggest "The most commonly used American diagnostic criteria..." - unless anyone can show that they are global, in which case references are due.

3. Epidemiology - US stats only.

A broader interpretation would include some other countries. I am unable to offer anything outside the UK (www.meassociation.org.uk), but I'm sure they exist. If we ask "Why should we mention the UK?" I would answer "Why do we mention the USA?". Wikipedia is for the world, not just one country.

4. "Chronic fatigue syndrome (CFS) is the most common name [1] given..."

The reference given does not support the statement that "CFS is the most common name", and without re-opening fruitless nomenclature controversy I would suggest the addition of a qualifying phrase eg "Chronic fatigue syndrome (CFS) is the most common name - at least in the USA - [1] given..."

I am limited by my ME in the amount of commitment I can give to sourcing suitable international information, which I regret. I ask the more energetic contributors to this page to help me out.

Please note I am not promoting the narrow inclusion of UK stats, nomenclature, etc. My aim is to broaden the article outside its current narrow USA focus to ALL countries, wherever information exists.

Tishtosh20 (talk) 10:23, 22 August 2009 (UTC)

I agree with some of your points - has the prevalence of the name CFS been established? In the UK it's most often called ME by the public, and it's officially supposed to be CFS/ME, to be inclusive. But what about the rest of the world? e.g. France: [24]
PMID 17419822 (Ref 4) says: "The US case definition of CFS (the CDC-definition) is most widespread in research and clinical practice." However, the CDC criteria are not specific enough, according to PMID 16612182, citing PMID 15018881
In general, WP articles are frequently US-centric [25], and systemically biased in other ways Wikipedia:WikiProject_Countering_systemic_bias Sam Weller (talk) 13:32, 22 August 2009 (UTC)
I've given up on the nomenclature: as you will see if you search this became the subject of flame wars some while ago. A further weakness of Wikipedia is that those with the most energy (and anal retention!) end up 'winning' the arguments, simply because they never give up.
I don't think any of my suggestions has ever been taken up, and I don't expect these to be any different - this despite the fact that as a sufferer I have more expertise than many of those who claim to know better. "A primary source in medicine is one where the authors directly participated in the research or documented their personal experiences. They examined the patients, injected the rats ..." I am a super-primary source - because I WAS THAT RAT. :-)
Tishtosh20 (talk) 17:21, 22 August 2009 (UTC)
You're not the only "rat" here. As an encyclopedia, however, Wikipedia can't take "I had this experience" as relevant, because you or I could be the exceptions to the norm. It tries primarily to use secondary or tertiary sources, since those are generally more distant from the subject and can therefore offer a more balanced view (or so goes theory, anyway).
As far as nomenclature goes, my impression is that CFS is the most common, even outside the US. Why do I say that when I'm from a country (Canada) that prefers ME/CFS and there are other countries like the UK, where it's the same? Well, if you go up to a doctor or even Joe Blow on the street just about anywhere and tell them you have "CFS" or "Chronic Fatigue Syndrome", chances are they'll know what you're talking about, or in the case of Joe Blow, they'll have heard of someone who has it or seen it on TV or whatever. If you tell that same person you have "ME" or "Myalgic Encephalomyelitis"...most of them would probably give you a blank stare...at least in my experience. But then again, as I just said, personal experience counts for little when writing an Encyclopedia.
I agree that there's a certain degree of US-bias, which is not all that unusual, but I think the main reason for that is that it has the largest English-speaking population in the world, and probably the most English-speaking doctors and researchers, therefore more data is likely to come from the US than anywhere else. It's not ideal that that's the case, but it happens...though the UK is probably also over-represented in the article as well to some degree, simply because a number of prestigious medical journals are from the UK. —RobinHood70 (talk • contribs) 21:15, 22 August 2009 (UTC)
Yes yes yes - I agree with all this. But nonetheless it is NOT established that "The most commonly used diagnostic criteria..." (implicitly meaning, in the world) - only that "The most commonly used American diagnostic criteria..." However important the USA or Canada or the UK, these are minorities of the world population. I'm not trying to promote the UK experience - merely broaden things out from the US one.
As for your Joe in the street knowing what CFS is, THAT IS NOT TRUE IN THE UK - and I suspect in other countries too. Why do we use these blanket statements without either qualification or sources? If you have evidence that CFS is the most common term worldwide, please bring it forward - but your 'impression' is no more useful than my '"I had this experience"'! WPV.
So can we not at least insert qualifiers like 'in the USA' or whatever?
Tishtosh20 (talk) 23:26, 23 August 2009 (UTC)
That's why I said it was my impression, because I wasn't saying that it was at all an encyclopedic fact. As far as being encyclopedic, if the sources listed say "in the US", then absolutely we can and should be adding that to the article. And if there are no sources, then usually it's appropriate to add a {{fact}} tag, though sources aren't required in the lead if the subject is expanded upon later in the article. —RobinHood70 (talk • contribs) 23:46, 23 August 2009 (UTC)
If it can be supported by WP:RS's, possibly. That said, I have been researching it and there are several reviews that say the same. Prins 2006[26] "The most widely supported scientific case definition is the 1994 definition from the US Centers for Disease Control and Prevention, which is now considered the standard.13." Wyller 2007[27] "Different case-definitions exist; most widespread – in research as well as in clinical practice – is the one developed by the US Centers for Disease Control and Prevention, commonly referred to as the CDC-definition (3) (Table 1)." There are more, but I don't feel like digging them all out.
But I also came across something I don't understand while searching PubMed. Searching chronic fatigue syndrome gives 4606 papers with 1029 reviews. Searching chronic fatigue syndrome AND myalgic encephalomyelitis gives the same results. Searching myalgic encephalomyelitis gives 4707 papers and 1034 reviews. I can't seem to replicate it on Google. Is PubMed substituting search terms? Ward20 (talk) 00:16, 24 August 2009 (UTC)
Going back to Joe in the street:
"Action for ME is the UK's leading charity dedicated to improving the lives of people with ME..." www.afme.org.uk.
"The ME Association (The MEA), founded in 1976 funds and supports research and provides information and support, education and training. In this role, we benefit people with ME (myalgic encephalopathy)/CFS (chronic fatigue syndrome)..." www.meassociation.org.uk
"Welcome to ME Research UK, a national charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS)..." www.meresearch.org.uk
Tishtosh20 (talk) 22:23, 24 August 2009 (UTC)

Ward: Yes, CFS, ME, PVFS etc are synonymous MESH headings: [28] Sam Weller (talk) 08:15, 7 September 2009 (UTC)

I see. Thanks. Ward20 (talk) 21:41, 7 September 2009 (UTC)

Pacing is helpful

I'm surprised that the article perpetuates the view that there is no good evidence supporting the two versions of pacing recommended since the 1990s (Goudsmit and Jason). The former is based on empirical evidence (many years of experience treating ME, it makes no assumptions about aetiology but is pragmatic and helpful in stabalising the condition) and Jason's version, which is based on the envelope theory. The RCT by Wallman, which I added to the article but was removed, supports the value of pacing (the difference between pacing and GET is not what you do or when but when you stop). So do the results of the predictors of ooutcome in the more recent conducted by Jason, Friedberg et al. So there is evidence. there arte a numnber of other controleld trials demonstrating that pacing as a component of a rehab programme is helpful. Pacing is acceptable, so the attrition rate is lower.

The number of trials supporting alternative multicomponent programmes such as those described by Jason, Goudsmit, Taylor, Thomas and others, shows that these are as helpful as CBT/GET, more acceptable and hence a useful alternative. Anyone noting this has their edits removed. This is not consistent with good science. NB. the editors haven't realsied that CFS excludes all epidemics, as the diagnosis cannot be made until 6 months. Not all those invovled in epidemics have an illness lasting6 months. I'd note the new criteria for ME but the paper wasn't published in a journal approved of by wiki, so won't bother.

For further info on multicomponent trials includign pacing, try Goudsmit et al. Patient Education and Counselling, 2009, doi:10.1016/j.pec.2009.05.015 —Preceding unsigned comment added by 88.97.5.228 (talk) 15:49, 23 August 2009 (UTC)

There is a whole section (or at least, paragraph) about pacing here. I originally put it in, and Ward20 added more info, including the Wallman ref (which is still there!) --sciencewatcher (talk) 16:46, 23 August 2009 (UTC)
Yes, and it shows no understanding of the subject. Ellen — Preceding unsigned comment added by 88.97.5.228 (talk) 19:00, 31 August 2009
Pacing is not mentioned in the main article, that people actually read. If there are several RCTs, pacing should have been included in the reviews used here.
The epidemic point is worth a separate discussion. Which new ME criteria? Sam Weller (talk) 19:21, 23 August 2009 (UTC)
This is a very good point. Why is this not in the main article? It may be in the treatment page but it should be moved to the main article along with other treatments.87.114.10.93 (talk) 21:42, 23 August 2009 (UTC)
Just to further that a little. Pacing gets a mention..just one solitary word!!! Whereas CBT/GET gets the bulk of the whole treatments section. This should be balanced up so at least when people read the main article there is the minimum of one paragraph about 'Pacing' along with the other treatments.87.114.10.93 (talk) 21:53, 23 August 2009 (UTC)
Hear hear. Tishtosh20 (talk) 23:33, 23 August 2009 (UTC)
OK I found a review for the pacing material and added it to the sub article. I would be OK with a short NPOV version on the main page. Ward20 (talk) 01:30, 24 August 2009 (UTC)

I was going to say why cannot this particular section on Pacing on the treatments page be replicated on the main page ? And then have more information fleshed out on the treatments page. Lets face it that's what they've done with CBT. I'm sure there is way too much info in CBT on both main and sub-treatment( espec. on sub page) I think we all get the general point about CBT without taking up most of the page with various text and sources being cited.87.114.19.181 (talk) 08:00, 24 August 2009 (UTC)

I don't think we should be replicating anything - that would defeat the point of having child articles. The main article should summarise the child articles. At the moment it doesn't do this very well - lots of people have commented on this (including me), but nobody has bothered doing anything. --sciencewatcher (talk) 19:12, 31 August 2009 (UTC)
The GET summary here doesn't seem related to the 'main' GET section, which reports problems with the evidence base, as well as several surveys that found adverse effects. Yet both sections are roughly the same length. This is the one that people read. Sam Weller (talk) 07:53, 1 September 2009 (UTC)

FYI

Just for everybody's information, I've asked for a re-assessment of the article quality. Given that it was first graded at the end of 2007 and with everything else it's been through, the rating it currently has is pretty much meaningless. I mean, doing a comparison of the article back then vs. now shows "Chronic fatigue syndrome is" as the lead and the translations at the end as pretty much the only things that have stayed the same. I figured now that the article seems to be stable, it was a good time to do it. If it becomes heavily-edited again, I would actually suggest removing the rating altogether, but we'll burn that bridge when we come to it. ;) —RobinHood70 (talk • contribs) 00:49, 21 September 2009 (UTC)

Just to follow up, for those who haven't already followed the above link, an outside editor has looked at the article, and as I had thought, we still rate B-class. —RobinHood70 (talk • contribs) 01:54, 21 September 2009 (UTC)
FWIW, the page has suddenly got hugely better IMO, much less tendentious and much more balanced. I don't know who is responsible, but I'd like to thank them very sincerely.Tishtosh20 (talk) 15:08, 28 September 2009 (UTC)

Aerotoxic Syndrome

I think some reference in the article to Aerotoxic Syndrome would be a good idea as CFS features heavily in this illness. --TCP146 (talk) 12:02, 5 October 2009 (UTC)

As stated in my edit comment, you need to fix the Aerotoxic article. At present, it is likely to be deleted because it doesn't have any reliable sources. --sciencewatcher (talk) 14:45, 5 October 2009 (UTC)
I agree with sciencewatcher. As long as there's a reliable source linking it with CFS in some way (either because they're often co-morbid or because they have very similar symptoms), then it belongs in the article. There does need to be a reliable source for it, though. If the only source is a self-promotional website, then it's likely to get deleted by whomever notices it. If there are well-known medical journals that establish a linkage of some kind, then I doubt there'll be much concern. I'd suggest searching on PubMed and see what you can find there. Personally, this is the first I've heard of the syndrome, so I'm not in a position to comment either way. —RobinHood70 (talk • contribs) 22:26, 5 October 2009 (UTC)
) nm.. i see the changes made. i was looking at a cached page.


deaths

The deaths section fails to mention deaths from heart disease.

As far as I have been able to tell, the Jason et al. paper shows that the CFS sample died 24.4 years earlier than normal people of heart disease, it makes one curious why Wikipedia does not mention that fact at all.

When a preliminary study by a respected team of researchers shows that people die 24.4 years earlier of heart disease than normal people, it passes the significance test.

Also, why does is there zero mention of the high proportion of lymphoma in the Incline Village population?

This seems to call out for some explanation.

Thanks. —Preceding unsigned comment added by Stoppropaganda (talk • contribs) 03:26, 9 October 2009 (UTC)

First, if you read the Jason paper, you see the CFS patients actually died less often from heart disease than the general population (20.1% vs 43%). As for cancer, the Peterson paper actually says "No statistically significant increase attributable to the chronic fatigue syndrome outbreak was identified at the state level" (and they say at the start "reported anecdotally to be associated with an increased incidence of lymphoid hyperplasia and malignancy"). --sciencewatcher (talk) 14:52, 9 October 2009 (UTC)
I recall we discussed death incidence on this page previously, it will be in the Archives, and at the time concluded there was no evidence, but given they have not yet carried out studies on death rates due to different diets, it might be possible, chronic disease does not yet seem to figure in lifespan calculations either? Jagra (talk) 01:48, 11 October 2009 (UTC)

updated version of paragraph regarding percentage of patients (CFS) whose blood antibodies test positive for XMRV

I have edited this article three times within the past 24 hours, and someone has violated the 3RR (Three Revert Rule) and I would like to know why. The relevant paragraph is the one just above Discussion. In it it's pointed out that according to this new research 67% of CFS blood tests positive for XMRV. On the day this research hit the press/media/science journal, an updated statement was released by the Whittemore Peterson Institute in Nevada, which was a collaborator in the study (along with Cleveland Clinic and the National Cancer Institute, part of the National Institutes of Health). That statement read: "Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95% ME/CFS samples tested positive for XMRV antibodies in the plasma. This finding clearly points to the retrovirus as a significant contributing factor in this illness," said Judy Mikovits, Ph.D., director of research for WPI and leader of the team that discovered this association.

I summarized this latest (95%) piece of research three times, and three times it has been editted out. I also attributed it, as per required. If one accepts the original piece of research, to the extend of summarizing in Wiki, one should also accept the research follow-on by the same group of organizations that performed the original research.

Any discussion from the person who is reverting my edits? Orhysjones (talk) 08:46, 11 October 2009 (UTC)

Actually, nobody has violated 3RR, since three different users have reverted your changes. I won't speak for anybody else, but my reversion was based on the fact that the 95% figure is from an unpublished portion of the study. Until the full study, including the 95% figure and how it was arrived at, is published in a reliable medical journal, it's not suitable for inclusion in the main article. Personally, I think it's better suited to one of the sub-articles, as someone else suggested, provided that it's clearly identified as a statement by one researcher who's speculating on the fact that it seems to be a contributing factor.
Don't get me wrong, as someone who has the disease and is convinced that it's physical in nature, I have a fervent hope that they're right and that they've finally found the cause of my illness...but until it's researched and verified by other researchers around the world, we have to be very careful about what we say about it here on Wikipedia. After all, while it would be a horrible embarassment, there could be serious flaws in their method or some other abnormality going on. Everything needs to be checked and confirmed by the medical community first, then we can publish it here. As they're fond of saying, Wikipedia documents verifiable information, not truth. —RobinHood70 (talk • contribs) 09:16, 11 October 2009 (UTC)
Thanks for your comment, RobinHood. I'm new at this editing game but I see your point vis-a-vis verification in a journal, even though the 95% figure was issued by the same people who did the original research. I just assumed the same methodology was used, but one mustn't assume.....Orhysjones (talk)
I was going to explain my edits, but RobinHood70 took care of it for me. I would like to add a subtle point, though; if the test group (with CFS) had the virus incidence recalculated and the control group did not, the results would be <redacted> inappropriate for scientific discussion. — Arthur Rubin (talk) 09:30, 11 October 2009 (UTC)
As for 3RR, if, by chance, you (Orhysjones) happens to be the IP previously adding the material, you might be in danger of violating 3RR if you added it 5 times (4 if someone else had added it previously, which seems to be the case). — Arthur Rubin (talk) 09:38, 11 October 2009 (UTC)
Arthur Rubin - I added it 4 times, I believe, but thank you. I was the originator of the original 95% XMRV testing insertion into the article. But I better review the rules - thanksOrhysjones (talk)

problem?

I'd like to know why you're reverting my edits? Please respond. Orhysjones (talk) 09:30, 11 October 2009 (UTC)

Explained above. — Arthur Rubin (talk) 09:39, 11 October 2009 (UTC)

Multiple RCT's

The Treatment section of the Article contains the following sentence but only cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown effectiveness for some patients in multiple randomized controlled trials. The treatment subarticle shows indeed that there have been two successful RCT's of essential fatty acid treatment. Which is based on the antiviral effect of certain EFA's found deficient in some CFS patients. I understand that recent reviews say the above but at the same time their references indicate that they have not considered all the material.

Fact not truth is at play here, but also its fact that two successful RCT EFA trials were conducted. As such it would seem some further qualification of this sentence is warranted, Any suggestions? Jagra (talk) 06:42, 15 October 2009 (UTC)

Some reviews found that antiviral RCTs have also shown promise - but with many adverse effects. I agree it's time to revisit this section. I've wondered whether it should be split into behavioural, pharmacological and other. And there needs to be an explanation of theories behind CBT/GET (assumptions about patients behaviour/motivation etc) and pacing (no assumptions). Sam Weller (talk) 08:46, 15 October 2009 (UTC)
.I've removed the word 'multiple' for the time being. This is way too biased and strong for this sentence.. it's only a few at best case scenario.87.115.98.6 (talk) 12:08, 15 October 2009 (UTC)
There have been 15 RCTs for CBT (see Malouff), and as far as my (inexpert) eye can tell, 13 of them showed a significant positive outcome and the other 2 showed no effect (either positive or negative). So 13 certainly would be "multiple". As for EFAs: 2 trials showed a positive effect, and a third was negative, and a review concluded it had "unknown effectiveness". Also, the trial that gave a positive result used mineral oil whereas the negative trial used sunflower oil which is "better tolerated" according to BMJ clinical evidence (but even that has its issues due to possible therapeutic effect). --sciencewatcher (talk) 14:28, 15 October 2009 (UTC)
Oops!!! 15 is definitely multiple..I've just reverted back to original text..87.112.24.8 (talk) 16:52, 15 October 2009 (UTC)
For clarification it was the words BUT ONLY that i object to. I agree that there are multiple CBT and GET (13 positive) with caveats. But 2 out of 3 is also a multiple for EFA unless my mathematics are wrong? The review that SW mentions that claims "unknown effectiveness" was one of those reviews that only compared one positive with one negative. Some how forget the other positive. Sorry to contradict SW but the positive trial compared in that review did use mineral oil as placebo but the one not in the comparision used olive oil. Both trials took note of adverse reactions but that did not effect the positive results only taste differences were noted for those silly enough to chew the capsules. So why is the placebo used of importance, well in a trial of essential fatty acids a placebo containing essential fatty acids would nullify the results and it is precisely what seems to have happened in the negative trial. They used sunflower oil as placebo which consists of more than 50% EFA no wonder it was 'better tolerated' it was treatment! So much for peer review!! Also importantly on a different subset of patients that showed prior that they had no EFA membrane deficiencies unlike the two positive trials on post viral CFS. Mineral oil contains no EFA's and the papers indicate caused no tolerance problems. So we have 2 positive trials which is a multiple. I have copies of all 3 papers if anyone has any queries.
I suggest for a start we alter the words to cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown effectiveness for some patients in multiple randomized controlled trials, other treatments to show effectiveness in several RCT's are carnitine, essential fatty acid treatment and antivirals. (add any caveats) Assuming Sam we can find the other references. I agree the Treatment subarticle does need an overhaul and suggest any RCT showing positive results be added. Jagra (talk) 07:57, 16 October 2009 (UTC)
By the way SW where did you get that notion that pubmed/medline/NIM listed journals are not required to meet peer review criteria for selection? What it actually says in your link in this discussion is that the journals peer review individual articles. thus However there is a process to meet for a journal to obtain and regularily to maintain listing here Which was my point about Medical Hypotheses, it passes muster. Note the bit about especially on the explicit process of external peer review Jagra (talk) 07:57, 16 October 2009 (UTC)
Our subarticle also shows two treatment trials for carnitine again a multiple, so have added that to list above. A search for antiviral trials has yeilded PMID 11340544, PMID 12582420 and PMID 18019402 for Valacyclovir and Ganciclovir. Although several of these might be classed small they are all successful controlled trials. In addition there appear to be 3 larger trials for Poly I:C which is classed as an antiviral and works in the 2-5RnaseL pathway, likely relevant to XMRV? PMID 12073768, PMID 7893988 PMID 8148460 One not a controlled trial and it might be two reports of one trial I'm not certain? Anyway it is multiple successful antiviral trials none of which are on our Treatment subarticle, and on that basis will remove the two words for time being whilst we sort out other wording changes.Jagra (talk) 06:52, 17 October 2009 (UTC)

Can you confirm that the carnitine study used a placebo? The abstract doesn't mention it, so it might need to be removed from the treatment page. As for the Valacyclovir: one study is 11 patients, which doesn't count, so that leaves one RCT. And for ampligen again one is 15 patients which doesn't count, leaving 1 RCT. So basically none of these have "multiple" RCTs, so you really should revert your change. --sciencewatcher (talk) 01:10, 18 October 2009 (UTC)

With regard to the second (missing) EFA trial there are several secondary sources that validate this (apart from the paper itself)including a Chapter in the book Post-viral Fatigue Syndrome 1991 Published John Wiley and Sons Edited by R Jenkins and J Mowbray. I will see if i can find the ISBN. and add to the EFA section in Treatments. Also reviewed in ^ Carruthers, BM; Jain AK et al. (2003). "Myalgic Encephomyelitis / Chronic fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (a Consensus Document)". Journal of Chronic Fatigue Syndrome 11 (1): 66. I will try to find also a link.
An RCT does not necessarily require a placebo, for example what placebo used in CBT trials? However I will look for the carnitine paper, As both ampligen and valacyclovir are classed as antivirals (similarily to different drugs with different effects being classed as antibiotic) Thats 2 (at least) antiviral RCT,s (read the PolyI:C abstract) We agree that is a multiple and therefore change not needed. More detail needed before add extra text though. Jagra (talk) 01:32, 18 October 2009 (UTC)

Jagra (talk) 01:32, 18 October 2009 (UTC)

An RCT has to have a "C" (control). The carnitine trial didn't seem to have that, so it's not an RCT - correct? Anyway, I'll just revert back to the prev version until you can come up with a more convincing argument. You're clutching at straws here. --sciencewatcher (talk) 04:26, 18 October 2009 (UTC)
According to Interventions for the Treatment and Management of Chronic Fatigue Syndrome JAMA. 2001;286:1360-1368. there are other treatments where multiple RTCs show benefit besides CBT.
"Two good-quality RCTs of essential fatty acids reported some beneficial effects of the intervention46-47 and 1 also found an overall beneficial effect.46"
"Five RCTs assessed the effects of immunoglobulin; of these, 2 showed an overall beneficial effect24-25 (1 was conducted with children24) and 2 showed some positive effects,26-27 although in 1 of the studies this was for physiological outcomes only.26 The largest of these 5 RCTs reported no effect of the intervention.28" "An overall beneficial effect of hydrocortisone was found in 1 RCT34 and some beneficial effects were reported in another.35"
There are caveats with some of these trials. But this review states CBT is not the only intervention where multiple RCTs demonstrated some benefits. Ward20 (talk) 05:19, 18 October 2009 (UTC)
I just realized that primary ref 47 above states there were no statically significant benfits from the trial even though the review states "some beneficial effects". Ward20 (talk) 06:32, 18 October 2009 (UTC)
Well it looks other multiples in antivirals, immunoglobulins, carnitine and essential fatty acids. Yes there were beneficial effects from the Warren EFA trial because they used EFA as placebo. Regarding the other two reveiws that confirm the three EFA trials these are as stated above in ISBN 0471928461, which reviews that first successful trial, and also importantly all three are reviewed in the Canadian Guideline document mentioned above this is the same reference in the Article for these guidelines, In the Treatment protocol section. I can provide another link. I will add these references to the treatment article, that confirms the multiple EFA RCT's.
Regarding Carnitine there is a more recent RCT, including PMID 17658628 the abstract says the elderly patients met four or more of the Holmes criteria and or at least 6 of Fukuda minor criteria This seems a translaTION problem as there are only two Holmes major criteria? An inspection of the full paper shows the patient symptoms also meet the Fukuda 2 major criteria similar to Holmes plus 4 minor and most meet Holmes, indicating it is a CFS study.
No straws SW on the table are still 2 positive EFA, 2 carnitine, 3 antiviral and possibly multiple immunoglobulins, I will look up past data on the IGG's. you will need to address fully and discount credibly all before reverting again. Jagra (talk) 04:51, 19 October 2009 (UTC)
IGG In linewith JAMA a search reveals 2 positive and one negative RCT, PMID 2146875, PMID 9201655, PMID 9236484 although there are 2 positive followup studies as well and a Polish review that concludes treatment is useful. PMID 12661419

This makes another multiple positive RCT treatment, I will sort out a treatment article addition later.

Antivirals another positive RCT added to the list. PMID 11340544. A small RCT has a higher rating than a randomised trial and still are counted in reviews as RCT's. That makes three positive Antiviral RCT's Jagra (talk) 07:11, 19 October 2009 (UTC)Also alpha interferon PMID 8675231 can be considered antiviral. Jagra (talk) 06:34, 21 October 2009 (UTC)
As Ward20 said above, the largest IGG trial showed no effect. Also there is just one carnitine RCT: the elderly. The other one doesn't appear to be controlled. So as far as I can tell, there is still nothing apart from CBT that has multiple RCTs. If you want we can add the word "large". --sciencewatcher (talk) 15:15, 19 October 2009 (UTC)
On the subject of controlled experiments, one of the "multiple" RCT's for CBT used in this article also appears to be uncontrolled (PMID 17426416 claiming 23%/69% recovery). A search in the talk archives reveals that this issue has been brought up in the past "multiple" times but perhaps one or two editors seemed to think that research on CBT is exempt from this standard? - Tekaphor (TALK) 02:23, 20 October 2009 (UTC)
Regarding the CFS Treatment article, Sciencewatcher seems to dismiss some studies above because there are a small number of patients (eg 11 to 15). OK, understandable, but to guide future editing I'd like to know where is the line drawn? There is a CBT study on changes in grey matter volume, which involved 22 patients, is this acceptable? - Tekaphor (TALK) 07:00, 20 October 2009 (UTC)
Can depend on study design see below re crossover studies, another guide is whether it is listed in systematic reviews. Jagra (talk) 07:29, 20 October 2009 (UTC)

In crossover trials group 1 acts as control for group 2 then visa versa. In a 30 patient trial there are 30 active results and 30 placebo results and mathematically it is considered equivalent to a 60 patient RCT. Thus the other carnitine paper is valid and is listed as an RCT in the JRSM systematic review that would support its inclusion. The origonal second one is also listed on the JRSM as an RCT had three groups of 30 patients, but the placebo control discussed in that paper seems to relate to an even larger successful trial but unpublished? JRSM that reviewed in more depth would support its inclusion. With the IGG trials being the largest is immaterial as two others i linked above are of adequate size for statistical significance, and both count. In addition there are three positive RCT's for hydrocortisone treatment PMID 15110921, PMID 9989716 PMID 9757853 that also count and one negative PMID 1282900 and will add to the treatment Article. There are still 3 antiviral trials, one small, and two EFA trials, making so far 11 other large positive trials. To that I could also add accupuncture if anyone wants to research that I am aware of several. I also beleive there are two poitive staphylococus toxoid RCT's one small, in EJP 1998;2 and 2002;6.

The treatment article should show all these RCT's even 'small' ones, and the above discussion shows many are missing. This Article, as others have said, should summarise. Thats what we now need to do. Jagra (talk) 07:25, 20 October 2009 (UTC)

Tekaphor is right that it looks like double standards to include PMID 17426416 - deleted. However, including each and every stray RCT doesn't make for good or accurate reporting. Many older ones could have been excluded from systematic reviews for various (usually good) reasons. Why not sort this out at the 'main' treatment article, and just present an executive report here?
The threshold for 'multiple' has been discussed for CBT (met), but have 'multiple' GET trials really been assessed in SRs? I thought there were 4, and a 5th trial that the authors described as 'graded exercise with pacing', lumped with GET by reviewers. 4 is 'several' not 'multiple', imo. Sam Weller (talk) 08:55, 20 October 2009 (UTC)
Agree Sam that we now sort out the treatment Article and then summarise, after all the raw material is here. In response to Tekaphor I have added some comment on 'small' trials on that page. Jagra (talk) 05:03, 21 October 2009 (UTC)
Thanks for the explanation Jagra, a cutoff point depends on methodology, even a very large study of thousands of patients would become useless if measures and diagnostic criteria were poor (*cough*). According to the PACE trial identifier [29] published in 2007, all the CBT/GET trials so far have been "small". - Tekaphor (TALK) 07:08, 21 October 2009 (UTC)

Patient surveys, CBT revisited

This issue has been brought up multiple times in the past. The talkpage archives suggest several editors have no problem with a mention for patient surveys (and surveys are mentioned already in the GET section), but adding them to the CBT section had been stonewalled? Anyway, it is about time these got a mention, using specific wording from reliable sources of course. So I added [30] the following:

"CBT has been criticised by patients' organisations because of negative reports from some of their members[51], which have indicated that CBT can sometimes make people worse[52]; one such survey conducted by Action for ME found that out of the 285 participants who reported using CBT, 7% reported it to be helpful, 67% reported no change, and 26% reported that it made their condition worse.[53]"

The statistics come from Annex 3 of the CMO Report, which is downloaded separate here: [31]. This report is several years old, so there may be more recent sources? Feel free to improve. As far as I know the only sourced data we have on the severely affected actually come from these type of surveys, so there's no good "scientific evidence" or "multiple trials" for the effectiveness of CBT in the severely affected, which is the group most concerned with the potential adverse effects of CBT.

_Tekaphor (TALK) 08:43, 21 October 2009 (UTC)

Lead

It struck me as somewhat unorganized, and redundant with some POV issues. I made changes accordingly. It seems to me it could still be tightened somewhat. Ward20 (talk) 22:00, 21 October 2009 (UTC)

Symptoms

I don't believe there is a very good description of the waxing and waning characteristics of the symptomatology. Ward20 (talk) 00:20, 22 October 2009 (UTC)

Pathophysiology

I have made more general the HPA caveat; that it is unknown whether changes are a cause or result of CFS, as this applies also to other factors. Also added other refs that link more of the factors described in the text in other models, to show the range of approaches. Jagra (talk) 08:23, 22 October 2009 (UTC)

A question of wording

I'd like to discuss something that we're having difficulty wording. I edited a sentence to read, "CFS affects a person's perceived well-being more than major medical conditions such as...", and Ward20 changed it to read "CFS affects a person's functional status and well-being more than major medical conditions such as...". The issue here is that the cited studies both relied on questionnaires, not on direct observations -- I think that ought to be brought out in the wording of the sentence. The cited studies leave open the possibility that a person's functional status, as assessed by a third person, might not be so greatly affected. If there are sources that support stronger statements, they should be brought into play. I would rather come to a consensus than edit-war about this. Looie496 (talk) 04:54, 25 October 2009 (UTC)

Thank you for bringing this to talk. I would like to point out the first of the two references for the wording, PMID 9205421 states interviews were conducted on a cohort of the subjects, "a subset of 22 persons were interviewed regarding their lived experience with CFS." and, "Overall scores on the quality of life index were significantly lower in CFS than for other chronic illness groups. Subjects reported the lowest quality of life scores in health and functioning domain. Indepth interviews provided a more complete understanding of the quality of life in CFS and further explained the low ratings that were found on the quality of life index."
The second reference PMID 8873490 did state they used a self-administered questionnaire Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). However, the conclusion of the study unequivocally states, "Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups."
Other studies that looked at CFS patents' impairment unequivocally stated similar findings: PMID 8873506, PMID 11516765, and PMID 14577835. PMID 14577835 is interesting in that it does talk about possible recall error or bias in patients responses and didn't believe they were significant.
The cited studies do not state their results are based on a person's perception but on standardized and validated instruments and statistical analysis to access functional status and well-being. The same instruments are used in studies of diseases with known causes. I know of no logic that one should question their validity because they are used in a study of CFS where cause is not yet known. Honestly, would the wording "a person's perceived well-being" be used concerning multiple sclerosis or congestive heart failure patients' impairment when the study uses standardized and validated self-administered questionnaires? These are the groups the CFS patients were compared to using the same instruments. Ward20 (talk) 07:56, 25 October 2009 (UTC)
While accurate in a technical sense to describe this as "perceived well-being", given that the questionnaires were self-administered and the interviews are based on the reports of the patients, the word itself hints at a psychological basis for the disease. What I would suggest instead, if I've understood the methods of the studies we've referenced, is wording to the effect of "patients' well-being in self-evaluations" (or self-administered tests or whatever). This avoids a potentially biased word while still remaining truthful to the sources. —RobinHood70 (talk • contribs) 08:55, 25 October 2009 (UTC)
I agree with Ward20 on this one. It should stand as it is. I think that wording to the effect of "patients' well-being in self-evaluations" has the same psychological connotation and is almost as biased as "perceived well-being". 87.112.89.152 (talk) 10:27, 25 October 2009 (UTC)

Reverts

An IP contributor to this and the XMRV article has reverted without explanation several recent edits regarding the virus. XMRV has not been reported in non-human animals; hence, "is known to cause leukemia and tumours in animals" is inaccurate. "XMRV is also linked to some prostate cancers" is a controversial statement, with evidence both for and against. Indeed, the largest study has found no association. News reports are unlikely to be the best sources for accurate information on XMRV and their use is deprecated. The phrase "strongly linked" is a bit strong given that only a single report has appeared and that no mechanism has been presented; "recently discovered" is best left out or replaced with reference to XMRV's first report in 2006. If these edits are unacceptable, let's discuss. Keepcalmandcarryon (talk) 20:14, 26 October 2009 (UTC)

The XMRV material has been removed entirely. [32] There was previous consensus to include it in the Pathophysiology section. Ward20 (talk) 23:47, 26 October 2009 (UTC)
Quote from the Science article, "In summary, we have discovered a highly significant association between the XMRV retrovirus and CFS."
FYI I was able to go toThe Whittemore Peterson Institute and click on the link that says "View Reprint" and access the full text. I can't consistently use the direct url address to access the text.
I suggest the article justifies the following or similar wording, "A 2009 study suggests a link between the retrovirus xenotropic murine leukemia virus-related virus (XMRV) and Chronic fatigue syndrome. The study stated researchers identified DNA of the virus in the blood of 67% of CFS patients and 3.7% of healthy controls, and reported the ability to infect cell cultures in vitro with XMRV from activated cells or plasma derived from CFS patients".[7] Ward20 (talk) 00:23, 27 October 2009 (UTC)
I'm guessing that was a misunderstanding of what we were removing and why. I'll re-instate it, if it hasn't been already. —RobinHood70 (talk • contribs) 03:13, 27 October 2009 (UTC)
Apologies for the blanket removal, I got in a bit of a muddle there I thought it was already in the main and this was just a replication..Opps it wasnt...I will agree again with Ward20 on his suggestion for the rewording..Makes sense..87.114.170.185 (talk) 08:59, 27 October 2009 (UTC)
Replaced with Ward20's wording. Sam Weller (talk) 10:48, 27 October 2009 (UTC)
Perhaps it needs to be mentioned that the ME/CFS patients in the XMRV study fulfilled both the CDC 1994 criteria and Canadian 2003 criteria? - Tekaphor (TALK) 01:43, 28 October 2009 (UTC)
I've added a line mentioning that patients met these criteria. Please feel free to adjust or tweak as appropriate.87.113.152.45 (talk) 10:22, 28 October 2009 (UTC)

I sense that the XMRV story is running a bit out of control (see WP:RECENT). A single report, albeit in a respected journal, should not receive much weight, if any, in an article on a major medical condition, and I note that no other primary report is accorded the weight given the Science article. At most, a mention is warranted, given the recent press coverage, but explicating the materials and methods is inappropriate, except perhaps in XMRV itself. Furthermore (and I apologise, as it seems some discussion has occurred previously), I am confused as to why this report is in "Pathophysiology". There is no known involvement of XMRV in ME/CFS pathology, and no reported mechanism for such involvement. Would not XMRV find a more appropriate home in an "associations" subheader in "Epidemiology"? Keepcalmandcarryon (talk) 15:47, 28 October 2009 (UTC)

On the subject of whether it should or should not be in pathophysiology there is a discussion further up the page or it's archived somewhere, but I think it was decided that it was the best place to insert it. As for how much should be in, yes I think some editors did get carried away a little but I think it's settled down now and the entry is now about right.87.115.178.196 (talk) 17:21, 28 October 2009 (UTC)
I've renamed Epidemiology#Disease_associations to #Associated_diseases because it's not about 'things associated with CFS', or comorbidity, but other diseases which overlap or might be mistaken etc. Difficult to name, please improve. The Path section is meant to summarize the 'main' Path article which includes causal theories as well - messy, like the subject. As for WP:RECENT, I agree with Kc&co and IP - it was bloated, but two sentences on a frontpage story (three if you include DeFreitas) looks OK for the time being. Sam Weller (talk) 17:42, 28 October 2009 (UTC)

Mitochondrial Dysfunction

Hi guys,

The article does not mention the theory about a mitochondrial dysfunction as a potentially underlying mechanism of chronic fatigue syndrome. Link to article: [33]

A friend of mine suffers from CFS and is contemplating taking the diagnostic test developed by Dr Myhill. As the article suggests a clear link to mitochondrial dysfunction, this seems an obvious route to take, but sufferers must find it odd that the wikipage doesn't mention mitochondria with one word. Is there a good reason for this? I'd like to write a section about it myself but frankly don't understand the subject well enough...

Kind regards, 80.192.28.139 (talk) 21:43, 27 October 2009 (UTC)Mike

I'm not sure if this journal is a reliable source - it doesn't appear to be properly peer reviewed ("The authors should provide up to 4 potential peer reviewers with detailed contact information including e-mail address"). Also the theory itself and the authors appear to be WP:Fringe. --sciencewatcher (talk) 22:05, 27 October 2009 (UTC)
Almost every scientific journal asks authors to suggest potential reviewers -- lots of times the editors don't know enough to find suitable ones on their own. The editors don't have to use the suggestions if they don't like trust them. Looie496 (talk) 22:17, 27 October 2009 (UTC)
(edit conflict) At this point the literature doesn't seem to justify a mention. That article is interesting, but it was published in an obscure journal and has not received any attention by the media or other scientists, which probably means that the experts don't find it very convincing. Wikipedia's sourcing rules for medical articles WP:MEDRS say that we should avoid relying on primary research reports as far as possible, and instead rely on secondary sources such as review articles -- at this point, there don't seem to be any. (Another way of saying this is that if you follow the medical literature, you see hundreds of things each year that are interesting ideas but don't pan out -- a top-level Wikipedia article can't cover all of them and needs to restrict itself to ones whose importance has been clearly demonstrated.) Looie496 (talk) 22:14, 27 October 2009 (UTC)
There is a small mention of mitochondrial dysfunction at the Pathophysiology_of_chronic_fatigue_syndrome#Metabolic_disorders article section. A pubmed search of "Chronic fatigue syndrome" mitochondrial yields 59 articles with 22 reviews. A quick skim of the articles didn't seem to reveal any major findings but there seemed to be mitochondrial abnormal gene expression and other misc. abnormalities. Ward20 (talk) 23:31, 27 October 2009 (UTC)

Thank you all for the very interesting comments. I gather more will be needed before the potential mitochondrial link will warrant inclusion in the main article. Moreover, although various online fora have patients writing their (mainly positive?) experiences with Dr Myhill's treatments for mitochondrial dysfunction, I have not seen evidence of a systematic review of these treatments. Let's hope such studies are planned by an independent body. Kind regards, 85.158.139.100 (talk) 13:11, 28 October 2009 (UTC)Mike

Let's hope not. Her website gives lots of misinformation and quackery (e.g. look at the autism section). But I don't think we need to worry - no serious researcher is going to touch it. Most of the reason CFS patients aren't taken seriously is because they get so involved in all these wacky theories, but unfortunately they don't even seem to realise this. --sciencewatcher (talk) 15:27, 28 October 2009 (UTC)
I don't know - that seems a wee bit harsh. Surely, it is in the absence of independent testing of new hypotheses/treatments that sufferers decide they have nothing to lose by trying something new? Some of these people have been ill for decades; I find it hard to blame them for being desperate, for clutching at straws even. Kind regards, Mike 80.192.28.139 (talk) 22:26, 28 October 2009 (UTC)
In point of fact, you're both right. Patients go through years or decades of suffering and are indeed looking for any solution that may provide some relief from their symptoms. I've seen it time and time again, and have even left patient forums because the main contributors would promote anything and everything by Dr. Joe Blow from Timbuktu as the latest and greatest diagnosis or treatment regardless of the complete absence of scientific evidence to back it up.
Sadly, none of these diagnoses and treatments work for everyone and in far too many cases, the doctors promoting them also happen to sell those same diagnostic testing kits or treatments. Convenient, huh? Why do they do this? Because they know that a large majority of CFS patients are desperate enough to buy any treatment or use any diagnostic method just to prove that it's not all in their head. I'm not saying that Dr. Myhill is this type of person, but it's obvious from even a quick look at the articles on her site that she's foundering as much as anybody. In those various articles, there's support for any number of causes and treatments, but most have never found support among the larger medical community. I think the reasons why they haven't should be obvious...they're disproven, rely on poorly obtained data, or are just plain wacky.
Of course, once in a while, what seems like a wacky theory turns out to have merit. One way or the other, to include it here, we generally need for the information to have been published in a reliable journal or similar high-quality source, and to have support by the wider medical community for the plausability of it. Looking at PubMed, I found 28 hits, one of them even by Dr. Myhill (PMID 19436827), on a search for "mitochondria chronic fatigue syndrome". I don't have the medical background to understand much of the information presented, so I'll leave it to others to figure that part out. In the end, one paper on the subject, or information presented by one doctor on their own website, doesn't make it very notable; if all 28 seem to support the idea of mitochondrial involvement, then we've probably got something worth noting on Wikipedia. —RobinHood70 (talk • contribs) 03:37, 29 October 2009 (UTC)
Blaming the poor attitude towards CFS patients mostly on their "wacky theories", doesn't sound very convincing Sciencewatcher. The experience of CFS patients has been routinely trivialized right from the very beginning, before many "wacky theories" were commonly available. Are you making a sweeping generalization based on your personal campaign against CAM and general contempt towards biomedical proponents of CFS? According to [ PMID 10750631 | PMID 12939888 | PMID 10782836] as a rough sample, the majority of CFS patients generally blame their illness on viral/immune abnormalities, chemical imbalance, and stress. These aren't particularly wacky compared to the assertion that CFS is a media-induced hysteria, for example.
CFS patients aren't taken seriously due to the (conflicted and largely disproved) range of stereotypes of people with CFS-like symptoms, combined with how presumed mental illness is taken less seriously (especially those deemed to be "neurotic", and even many physical diseases are stigmatised and/or not taken seriously enough). The "contested etiology" of CFS is not helping the situation, and the paper "How Science Can Stigmatize: The Case of Chronic Fatigue Syndrome" [34] highlights how the naming and flawed epidemiology further contributes to the skepticism and stigma surrounding CFS. There are other papers dealing with the attitude towards CFS from the perspective of patients. Doctors generally have inadequate knowledge of CFS, and medical guidelines are insisiting that CFS needs to be taken more seriously. - Tekaphor (TALK) 06:10, 31 October 2009 (UTC)
Guys, we seem to be drifting off-topic here, and I'm guilty as well, though I tried to bring it back to being about the article. In the end, the question is about whether or not mitochondrial dysfunction belongs in the article, not what sciencewatcher's or CFS patients' theories on the cause of their illness are. The rest of the debate belongs on your personal talk pages or private e-mail. —RobinHood70 (talk • contribs) 06:44, 31 October 2009 (UTC)
I provide sources to help stimulate potential article related activity. While the discussion is obviously in the wrong subsection, the attitudes towards or beliefs of CFS patients is well within the purpose of this article and talkpage. - Tekaphor (TALK) 07:03, 31 October 2009 (UTC)
The general current view is that mitochondrial impairement in CFS is 'mild' PMID 8771284. However given a mild improvement to a patient it may well make the difference to normal functioning. Carnitine treatment is said to assist mitochondrial function in muscles PMID 17331998 but also CNS and nuerotransmitter balances and symptoms, likely also thru mito PMID 17561689 ? In regards to CFS PMID 8544970, and PMID 8148455 discuss these aspects. I will add something to the treatment section to clarify. Pathophysiology also had a bit to say on this once and probably needs an update. Jagra (talk) 01:47, 1 November 2009 (UTC)

Political Dysfunction at the CDC and the Dangers of CBT/GET for CFS

The section is a discussion on the naivety of some of the contributors to this CFS article. I am not suggesting that any of the contributors here are not working in good faith, and to the best of their knowledge and abilities, but that certain contributors are not aware of the troubled political history of chronic fatigue syndrome, and how this politics has distorted the truth.

I hope all of you are meticulous enough to want to inform yourselves of the essential background politics, particularly regarding organizations such as the Centers from Disease Control (CDC) and the National Institutes for Health (NIH), and the less than noble role they have had in this troubled history of CFS. In an ideal world, we would not need to involve government and corporate politics in what should be pure science, but sadly these may have significantly tainted the research.

I suggest you begin to clue yourselves up by reading the investigative journalism of Hillary Johnson (see her book: Osler's Web, or web site: www.oslersweb.com ).

Just to get you started:

For one thing, you need to be aware that there is a very biased stance in government health departments around the world against the idea that CFS is a physical disease. The Centers for Diseases Control (CDC) still officially says that CFS is a psychological disease. This results in the terrible situation where critically ill CFS patients are routinely told by many in the medical profession that their illness is "All in the Mind". For CFS patients, this is an utterly insulting, and even immoral, stance for doctors and CDC to take. Imagine if that was said to heart attack or cancer patients.

One of the reasons for the CDC's denial that CFS is a real disease is that CFS patients suffer, but don't die, and are often too ill to work or even to look after themselves. So CFS patients are one of the most expensive to look after in the long term. Governments therefore save a lot of money by classifying CFS as a psychological disease, as they can then avoid health insurance payouts in this way. Sad, but this is the way the real world often works.

But in taking this "CFS is All in the Mind" stance, which is more about realpolitik than truth or science, the CDC and NIH have also blocked funding for research into the infectious disease model of CFS. For a long time, research into infectious causes of CFS was not just doing science, but also a kind of cold war, as the CDC and NIH have often tried, and succeeded, to bring discredit upon CFS infectious disease researchers, and have even ruined careers and reputations of scientists that have deviated from the official "It's all in the Mind" view of the CDC/NIH. Please check this history out for yourselves, don't take my word for it.

In addition, this "CFS is All in the Mind" policy of the CDC/NIH has placed critically ill CFS patients into the hands of the psychiatric profession, who have tried to apply often inappropriate psychological methods to this disease, whilst profiting from these patients.

In the United Kingdom, Prof. Simon Wessely has become openly hated by many in the UK CFS community, as many there believe Wessely's psychiatric "research" is is more informed by political requirements than by truth. I leave it to you to find out more on the Wessely School of thinking. But here is a tip: guess who is going to be an influential force behind the XMRV in CFS study currently taking place in London. You guessed it, that old devil Wessely. So I wonder how unbiased this XMRV research is going to be. These UK patients will likely have been selected by the Oxford criteria (invented by the psychiatric profession to include large numbers of patients with mental disorders such as mild depression) instead of the Canadian criteria. They will not have neurological M.E. as classified by the World Health Organisation. Therefore this study is likely to be fraudulent, essentially.


This information is important background knowledge for anyone here trying, in good faith, to write a factual, unbiased article on chronic fatigue syndrome.

Do familiarize yourself with this checkered history of CFS, before you place trust in any authority such as the CDC or NIH, or the published statistics of the psychiatric treatment for CFS.

Drgao 03:45, 2 November 2009 (UTC)

Well I for one do not beleive that most of the regular contributors here are 'naive' in respect to the matters raised, as you would discover if you had a long read of the Archives. I don't think it helps your cause by making such comment without doing your research first. It would also be helpful if you posted links to reliable sources WP:RS in your essays if you want to be taken seriously. This Article has a number of daughter sub articles including one on controversies, that I also suggest you read. If you have additional reliable source material that you wish to discuss then you are welcome to post it here first. Jagra (talk) 07:09, 2 November 2009 (UTC)
I agree with Jagra. While there may be any number of contributors here with varying views, there's not a single regular contributor that I can think of who's unaware of the controversy. Please be aware, however, that the talk page is for discussions about the article itself, not those who contribute to it. —RobinHood70 (talk • contribs) 09:17, 2 November 2009 (UTC)
Hi Drgao. There is indeed background politics with CFS in the real world, but there is also background politics with this article in the online world of Wikipedia. It is difficult to say how much each editor here knows about the controversy, but editing at Wikipedia can get complicated and edit-warring can get messy. Additionally, WP:RULES gives strong preference to the authorities you mentioned, which is obviously a major problem if they are incompetent. If you can find and insert concise text from published "reliable sources" that discuss the controversy and meet WP:RS and WP:NPOV policy standards, I will try to back you up. - Tekaphor (TALK) 10:09, 2 November 2009 (UTC)
Is it time to include a summary of the Controversies_related_to_chronic_fatigue_syndrome article here, instead of the empty signpost? Sam Weller (talk) 11:15, 2 November 2009 (UTC)
The answer to the above question is a resounding yes. I didn't realise the Controversies section was just an empty template. I think we should have at least one or two compendious lines to sum up the main points and controversies..OrionKnight (talk) 14:34, 2 November 2009 (UTC)
It sure is, Sam; it seems odd that there is none already. The growing momentum of criticism towards the CDC's (and others') handling of CFS is interesting. - Tekaphor (TALK) 15:31, 2 November 2009 (UTC)

Thanks very much Tekaphor, Jagra, RobinHood for your rapid replies.

My concern is that you have included certain statements in your CFS/ME articles that are unreliable (even though the statements come from "reputable" sources). For example, in the chronic fatigue syndrome treatment article, your launch straight into copious details of cognitive behavioral therapy, yet this is one of the most pseudoscientific and often dangerous treatments that there is for CFS. Although you do mention in the last paragraph that some patients' organizations have criticized CBT/ GET for CFS, the average reader of your article would probably assume that CBT/GET was one of the best CFS treatments. The same prominence is given to CBT/GET in your main CFS article.

Here is just one quote from your CBT/GET section: "Published in the British journal The Lancet in 2006, a Dutch group reviewed research findings and concluded that CBT and GET were "the only interventions found to be beneficial". Did you know that the Lancet has often aligned to the minority Wessely School, and therefore cannot be seen as a reliable source of unbiased information in the case of CFS/ME.

You must appreciate that Wessely School are small, but very politically astute and powerful. They have friends in many government departments. Admittedly, this does make it difficult for you to write an unbiased CFS/ME article, since (as Tekaphor mentions), WP:RULES give strong preference to such authorities. Thus clearly in this case, it must be up to your own, combined editorial discernment to decide which sources are reliable, and which are not. IMHO, you should not be writing material that effectively supports the profits of the insurance industry (to which Simon Wessely and friends are connected).

You may be interested in these general links that detail the tentacles of the Wessely School, just so that you can be aware of them:

http://www.sophiaandme.org.uk/collusion.html

http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

I really hope that this does help.

It would be very nice to see the CFS/ME article get a higher quality awawrd than the current B. In general, I think the articles are pretty good and informative. Perhaps you could consider including more detailed coverage of some of the main hypotheses about the nature of CFS. After all, the causality research is the main thrust in CFS/ME.

For example, information on the Whittemore Peterson Institute's current working hypothesis on XMRV in CFS:

"The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections." Ref: http://www.wpinstitute.org/xmrv/index.html

Or the enterovirus hypothesis for CFS/ME. Ref: http://www.cfids-cab.org/MESA/Chia.pdf

Then there is the hydrogen sulfide hypothesis / influence on CFS/ME, by Marian Dix Lemle, and now taken up by Dr Kenny De Meirleir Ref: http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1314423

Another interesting little hypothesis to report on is the "Amygdala Hyperarousal Model for ME/CFS" by Ashok Gupta. Here is a person that does not deny that CFS/ME is a physical / viral disease, but works with this in his (apparently effective) psychological treatment of CFS/ME. Ref: http://planetthrive.com/2009/10/xmrv-retrovirus-findings-and-amygdala-hyperarousal-model/

Drgao 16:42, 2 November 2009 (UTC)

Drgao: you are one of the people I alluded to above who believe in conspiracy theories and wacky theories. Although I agree with Tekaphor that people like you are the minority, unfortunately they are a very vocal minority. I don't think you realise the damage you are doing to CFS patients. And you show your true colours when you say that psychiatric illness is not a 'real disease' and is 'all in the head'. It's also untrue that people suffering from purely psychiatric disease do not get insurance or disability payments, at least in the UK (not sure about other countries). The main problem is a stigma against psychiatric illness, which you so neatly illustrate with your comments above. Anyway, we are getting pretty far off topic, so if anyone wants to just delete this entire discussion I don't mind, although it is interesting. --sciencewatcher (talk) 18:03, 2 November 2009 (UTC)

No, your character judgement appears to be inaccurate in this instance Sciencewatcher. I absolutely hate conspiracy/wacky theories as much as you obviously do. I studied theoretical physics, and I am vociferously skeptical about any form of nonsense. I hope that is clear. Also, I am a CFS/ME patient myself, and my intentions are: to do the best I can for my fellow patients with CFS/ME, to point out medical quackery when it needs to be done, and to pass on information that will help the general advancement or understanding of CFS/ME research. I would love to see these Wikipedia CFS articles excel in quality. They are already pretty good.

I have no problem with the label of psychiatric illness, and clearly there are psychological components to CFS/ME. However the CFS community, and most of the decent CFS doctors, realize that these CFS psychiatric elements have mostly physical causes, rooted in biology. By contrast, Simon Wessely says on record that ME is merely a “belief” held by those who think they suffer from it; that ME patients’ muscle weakness is “simulated”.

The only wacko here is Wessely, who believes you can accidentally think yourself critically ill. I am sorry, but that is pure bull.

Drgao 18:48, 2 November 2009 (UTC)

I will only address your last sentence, which is plausible nonsense. There are many cases of severe, apparently physical, illness which turn out to have organic (the technical word for "psychiatric") causes. They usually don't fall into as characteristic a class as CFS, but mass hysteria is a fairly common and understood phenomenon, and can have apparently life-threatening symptom sets. — Arthur Rubin (talk) 19:14, 2 November 2009 (UTC)
Sorry Drgao, but your comments above regarding the "Wessely School" sound much more like a conspiracy theory than the scientist you claim to be. Wessely has done a lot of research into the physical symptoms of CFS, including the HPA axis. And he has never said that you think yourself ill - he believes that CFS has a number of triggers such as viral illness and stress, but that illness beliefs are important in perpetuating the illness (but not necessarily in causing it). His comment about ME being merely a belief was referring to CFS patients believing the clearly incorrect etiology implied by the term ME. --sciencewatcher (talk) 19:23, 2 November 2009 (UTC)
Arthur Rubin, Your terms are completely misleading: Organic = physiological. Organic cause: "one which involves or affects physiology or bodily organs. A disease in which there is a physiological change to some tissue or organ of the body." You appear to have meant Functional symptom, "which has no identified cause (etiology) despite extensive diagnostic assessments. By default, a functional symptom often is judged to have causes that are neither physical nor physiological, but rather psychological or psychiatric." Interestingly, the stub continues, "Historically, functional symptoms tend to be reclassified as organic as investigative techniques improve." Did you also mean 'palpable', not 'plausible'? Sam Weller (talk) 20:25, 2 November 2009 (UTC)
Actually, I have confused "organic" and "functional", but I meant Drgao's last statement was plausible, but clearly incorrect. — Arthur Rubin (talk) 20:53, 2 November 2009 (UTC)

Arthur Rubin, can you name any other chronic illnesses that can leave you bed bound for decades, yet which are merely perpetuated by your belief system. Can we apply Wessely's theory to other neurological diseases, like multiple sclerosis, Parkinson's disease, Alzheimer's disease, prion diseases, dementias, migraine, epilepsy, autism, Tourette syndrome, attention deficit-hyperactivity disorder, amyotrophic lateral sclerosis? Surely if you believe this Wessely theory, it must occur elsewhere too. Why just CFS/ME? Why does CFS/ME have to be targeted by this claptrap. Perhaps you think we could abandon biology, and just cure all sorts of chronic conditions by a simple change of belief systems. Let's just go back to miracles.

You gave examples of mass hysteria in groups of people, but as I am sure you know, the psychosomatic symptoms evoked by such hysteria disappear rapidly in days, when the group is disbanded. But let me argue from your perspective, and help you out here. Let's consider the case of a genuine long-term psychosomatic condition: post-traumatic stress disorder (PTSD). In this case, extreme, often repeated stressful events, such as soldier in war may experience, are thought (in one leading theory of PTSD) to instigate a process know as kindling in the limbic system, which in effect "burns in" an exaggerated fear response. There is no doubt that these stressful events do completely alter the brain's functioning, leading to the altered physiology of PTSD. This presumably is the kind of example you want to give me. Fine. But there is a huge difference between an intense, usually repeated, stimulus, that is so powerful it restructures the limbic brain, compared to a mere belief. I believe that next month is December. But that belief does not fundamentally restructure my limbic brain. So Wessely's talk of beliefs having such mystical powers over illness and health are more an antiquated religious idea than modern science. Perhaps he should become a vicar.

Anyway, I am waiting to hear your other examples of people bedridden for decades just because of a belief they may have.

Drgao 01:04, 3 November 2009 (UTC)


You just need to look back to the Victorian age to see people bed-ridden for decades from psychosomatic illness (hysteria it was called then). It has always been around, just with different names. And you certainly don't need intense stress to restructure the brain. Recent research shows that simply learning to juggle causes significant changes to the structure of the brain.
Oh, and I notice you made a comment a while ago saying that there are very strong similarities between psychological burnout and CFS. I think that is the route you should be taking in looking for answers.
I don't think anyone is saying beliefs themselves cause CFS - it seems to be stress. Beliefs are simply considered one perpetuating factor. Consider that psychological stress is a significant cause of heart disease and can trigger heart attacks - you can't get more physical than that! --sciencewatcher (talk) 01:32, 3 November 2009 (UTC)

I remember a very interesting course I took some years ago on Freudian defense mechanisms, in which hysteria was explained within that context. I do think this psychological explanation has merit.


NOTE, my extreme criticism of the CDC is in its handling of CFS/ME, not overall. The CDC do some very good work, and are reliable in the majority of situations. It is the Wessely School's negative influence on them that has caused these problems.

In the CDC connection with CFS, if you peer a little deeper beneath the surface, you will find that it is the psychiatric profession that is pulling many of the strings in directing CFS research and disease classification in the CDC and wordlwide, and deep down, many key figures in the psychiatric profession wish to force apon us their view that CFS is ‘all in the mind’, imaginary and malingering (malingering is a medical term that refers to the fabricating of your symptoms). The name the "Wessely School" is given to these key players. These people are responsible for bringing to the fore the often damaging GET and CBT treatments. And it is well-known that Wessely and Anthony David are trying to overturn the WHO formal classification of ME as a neurological disorder and to re-designate ME as a psychiatric condition.

Ref:http://www.ahummingbirdsguide.com/wmarwillcosi.htm

Members of the ‘Wessely school' include: in the UK: Simon Wessely, Michael Sharpe, Anthony Cleare Peter White, Anthony David; in the US: Bill Reeves, Straus, etc of the CDC; in Australia: Lloyd, Hickie, etc; in the Netherlands: the clinicians of the Nijmegen group. (A lot of the political problem does come from the UK, where CFS/ME patients get the cold shoulder more than other countries, as a result.

If you look at little deeper, you will find that the insurance industry is a force behind these guys, and it seems to benefit the insurance industry to have ME classified as psychiatric, not physical.

Peter White is one of the chief medical officers for insurance company Swiss Re and their other "CFS experts" are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare. Ref: http://www.hfme.org/cbtandget.htm.

I really hope that the contributors of the CFS articles will read these links. --Drgao 20:11, 4 November 2009 (UTC)

Being an editor of this article does not mean an automatic endorsement of the contents. If you look at the talkpage archives, there has been many disputes about the role of psychological factors and the claimed efficacy of CBT/GET. Yes, Wessely implies that the model could also apply to "fatigue" in the presence of HIV-infection, MS, RA and cancer (see page 3 of 4 in "Chronic fatigue syndrome; identifying zebras amongst the horses." [35]) The mind-body issue requires a lot of discussion that goes outside the purpose of Wikipedia, but I wouldn't put too much stock in stories of alleged psychosomatic illness from the 19th century.
So the competence and integrity of the authorities dealing with ME&CFS have been called into question. I don't know which specific details are accurate or which sources are considered "reliable" enough, but a blanket dismissal as "conspiracy theories" is a major copout. A good example is how the CDC has already been involved in a CFS funding scandal, so it is not all that surprising that they are currently under criticism again. Perhaps it is time that the criticisms of the CDC from the ME & CFS communities are elaborated on in the text on controversies where "MEDRS" does not apply? - Tekaphor (TALK) 03:31, 5 November 2009 (UTC)

A NEW CBT/GET DANGERS REFERENCE HAS BEEN PROVIDED BY SAM WELLER AND TEKAPHOR (SEE BELOW). In this light of this, I though it might be a good time to rename the title of this section to something a more appropriate, namely Political Dysfunction at the CDC and the Dangers of CBT/GET for CFS. I hope this is OK with everyone. --Drgao

PMID 19855350 (preprint) criticizes the CBT/GET model in ME/CFS root and branch, not just 'side effects' and 'study limitations' as at present. Sam Weller (talk) 13:12, 7 November 2009 (UTC)
The fulltext PDF of PMID 19855350 is available via email at http://node.nel.edu/?node_id=8918. - Tekaphor (TALK) 13:57, 7 November 2009 (UTC)

--Drgao 16:53, 7 November 2009 (UTC)

  1. ^ Rogers, Richard (1997). Clinical Assessment of Malingering and Deception, Second Edition. New York, London: Guilford Press. p. 40. ISBN 1572301732.
  2. ^ Malleson, Andrew (2005). Whiplash and Other Useful Illnesses. Quebec: McGill-Queen's Press. p. 59. ISBN 0773529942.
  3. ^ Cutler AH (1999). Amalgam Illness: Diagnosis and Treatment. self-published, peer-reviewed per erratum in: Toxicology. 2007 Sep 5;238(2-3):216).
  4. ^ Rooney JP (2007). The role of thiols, dithiols, nutritional factors and interacting ligands in the toxicology of mercury. Toxicology, 2007 May 20;234(3):145-56. Epub 2007 Mar 1. Review. PMID 17408840. Erratum in: Toxicology, 2007 Sep 5;238(2-3):216.
  5. ^ Cite error: The named reference NICECG53 was invoked but never defined (see the help page).
  6. ^ Wearden AJ, Riste L, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Dunn G, Richardson G, Lovell K, Powell P (2006). "Fatigue Intervention by Nurses Evaluation - The FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol". BMC Med. 4 (9): 9. doi:10.1186/1741-7015-4-9. PMID 16603058.{{cite journal}}: CS1 maint: multiple names: authors list (link) CS1 maint: unflagged free DOI (link)
  7. ^ Lombardi VC, Ruscetti FW, Gupta JD; et al. (2009). "Detection of an infectious retrovirus, XMRV, " (PDF). Science. doi:10.1126/science.1179052. {{cite journal}}: Explicit use of et al. in: |author= (help)CS1 maint: multiple names: authors list (link)
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