Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 10

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Discussion of edits [1] and [2]

Latest comment: 15 years ago19 comments8 people in discussion

With an inaccurate edit summary of (revert POV edits), the edit[3] reintroduced problems and inaccuracies discussed on the talk page and edit summaries that other edits attempted to fix. The edit should be reverted. Ward20 (talk) 05:47, 1 January 2009 (UTC)

I also believe this edit[4] is flawed. the Journal of Chronic Fatigue Syndrome although not PubMed indexed was peer reviewed. A virtual who's who of CFS researchers have published in it. the Journal of Chronic Fatigue Syndrome is referenced by CFS articles authored by Wessley, Cochrane Reviews, Prins, Chalder, and almost countless others. The cited article is a secondary source and the A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome authors are well published and respected CFS researchers, and many are already cited in this article:

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

The cited article is incorporated in the book Pediatric Chronic Fatigue Syndrome By Kenny De Meirleir, Neil R. McGregor, Elke L. S. Van Hoof Published by Informa Health Care, 2007 ISBN 0789035316, ISBN 9780789035318 [5]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is a large difference between an independent opinion on the noticeboard for that purpose, and a single editor of less than a thousand edits stating they think it's a reliable source. Of the two, the RSN posting carries more weight for me due to its independence and actual analysis of the contribution and peer-review patterns. Lassesen, it is not the contributor that makes a journal or other publication reliable, because contributors can be initially respected then have later work rejected - see cold fusion which made a laughingstock of Stanley Pons and Martin Fleischmann; see orthomolecular medicine which lost Linus Pauling his credibility. It is the degree of oversight, fact checking and overall reputation of the publication. If a contributor to a journal makes a general comment about an area of his expertise in a less reliable source, that is a different matter than the same contributor making the same comment in JAMA. The latter can be freely used, the former could be used only with caution and with clear attribution that it is one opinion rather than that of an entire field. A statement made in an article published in a respected peer-reviewed journal carries the weight of the journal and peer reviewers as an endorsement of good methodology, good science and good analysis, and is thus worth discussing seriously. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:01, 11 January 2009 (UTC)

Published Works - Antiviral Treatment of CFS

Latest comment: 15 years ago12 comments5 people in discussion

Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993; 104:1417-1421. This first of our CFS publications outlines the essential cardiac involvement of CFS. We showed that 24 CFS consecutive patients had abnormal cardiac electrical conduction by 24-hr. ECG testing (Holter monitoring) compared to 106 non-fatigued control patients (p<0.03). In 8 of the 24 patients, gross abnormal cardiac wall motion at exercise MUGA testing was seen. Coronary artery disease was excluded by myocardial perfusion imaging in all CFS patients.

2 Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677. Continuing the CFS cardiac focus, 11 CFS patients were studied using the cardiac nuclear medicine MUGA test which measures muscle strength of the heart. Abnormal cardiac wall motion at rest and stress, dilation of the left ventricle and segmental wall motion abnormalities were observed. The cardiac abnormal dynamics worsen as CFS continues.

3 Lerner AM, Goldstein J, Chang CH et al. Cardiac involvement in patients with chronic fatigue syndrome as documented with Holter and biopsy data in Birmingham, MI 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-33. This is a controlled study of CFS cardiac involvement. The prevalence of abnormal Holter monitoring in 67 CFS patients and 78 non-CFS patients matched for age, place and time and absence of other confounding medical diseases were compared. Holter monitors in both CFS and control groups were read by two non-involved cardiologists without clinical knowledge about the patient or place in the study. Dr. Lerner was not a reader of Holter monitors in this study. The prevalence of T-wave abnormalities by Holter monitoring was greater in CFS than in non-CFS patients (p<0.01). The presence of abnormal T-waves at Holter monitoring was “sensitive indicator of the presence of CFS.” The “absence” of these abnormal T-waves made the diagnosis of CFS unlikely (statistical sensitivity 0.96). Light and electron micrographic studies of right ventricular endomyocardial biopsies in these CFS patients showed cardiomyopathic changes. We do not recommend further right ventricular cardiac biopsies in CFS patients since the hearts of CFS patients may be friable and may have an increased likelihood of post-biopsy bleeding.

Summary of Publications 1-3 (Cardiac Involvement in CFS) This original work shows that rapid heart rates at rest, and in some cases, abnormal cardiac wall motion contribute to the light-headedness that many CFS patients experience. Uniformly, abnormal Holter monitoring is present in CFS patients. This additional criterion for diagnosis of CFS illness, namely abnormal Holter monitoring, to the CDC criteria for the diagnosis of CFS does not exclude any CFS patients included in the original CDC definition. The absence of abnormal Holter ECG testing indicates that these fatigued patients do not have CFS.

4 Lerner AM, Zervos M, Dworkin HJ, Chang, CH and O’Neill W. A unified theory of the cause of chronic fatigue syndrome. Infectious Diseases in Clinical Practice 1997;6:230-243. We originally hypothesize that CFS is a prolonged infectious mononucleosis syndrome in previously healthy (immunocompetent) persons. We further speculate in this early study that prime candidates for the cause of CFS are two herpesviruses which cause infectious mononucleosis: Epstein-Barr virus (EBV) and cytomegalovirus (HCMV). We further suggest that studies seeking a single virus cause of CFS, even those studies searching for single virus EBV or single virus HCMV would conclude in a result of “no cause.” Indeed, such negative studies have been done. We suggest that (1997) there may be three causes of CFS: 1) single virus EBV CFS; 2) single virus HCMV CFS; and 3) EBV-HCMV co-infection CFS. This hypothesis (1997) we now know is correct.

5 Lerner AM. Editorial response: microbial persistence and idiopathic dilated cardiomyopathy. Clinical Infectious Diseases. 1999;29:526-7. Dr. Lerner discusses the possible relationship between long-standing cardiomyopathy, heart muscle disease not associated with coronary artery disease, and CFS. CFS is a cardiomyopathy of varying severity.

6 Lerner AM, Zervos M and Dworkin HJ et al. New cardiomyopathy: A pilot study of intravenous ganciclovir in a subset of the chronic fatigue syndrome. Infectious Diseases In Clinical Practice 1997;6:110-117. CFS patients in this study had significant IgG serum antibody titers to cytomegalovirus, but little to no evidence of EBV infection. In this study 13 of 18 CFS patients were remarkably improved after 30 days of intravenous ganciclovir (p<0.05). Single virus HCMV CFS in this pilot study was improved by antiviral treatment. There were no side effects from this carefully monitored trial. Results are similar using oral valganciclovir (valcyte).

7 Lerner AM, Beqaj SH and Deeter RG et al. A six-month trial of valacyclovir in the Epstein-Barr virus subset of chronic fatigue syndrome: improvement in left ventrical function. Drugs of Today. 2002; 38:549-561. Twenty-five patients with CFS illness were treated for 6 months with pharmacokinetic doses of valacyclovir (valtrex) in a formulation to give continuous anti-EBVeffective blood levels throughout the day. This is the first time such valacyclovir dosing was given. The trial was approved by the U.S. FDA. Patients were carefully monitored for safety by repeated appropriate blood tests. There were no adverse side effects. Sixteen patients with single virus EBV infection were benefited, but 9 clinically similar CFS patients with EBV-HCMB co-infection were not benefited. Valacyclovir (valtrex) in the laboratory is effective versus EBV, but it is NOT effective (active) versus HCMV. Therefore, the results strengthen the need for subset classification and appropriate subse-directed antiviral treatment for CFS illness. This, to our knowledge, is the first successful report of valacyclovir treatment for EBV infection. These results have now been repeated with similar benefit to CFS patients.

8 Lerner AM, Zervos M and Chang CH et al. A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome. Cllincal Infectious Diseases. 2001; 32:1657-58. Eleven CFS patients with EBV-HCMV co-infections were treated according to their subset classification over an 18-month period with antiviral drug treatments. All patients were monitored for safety every 4-6 weeks. Valacyclovir for EBV infection and introvenous ganciclovir for HCMV infection were used. There were no significant side effects in CFS patients. All 11 CFS patients in this study significantly improved.

9 Lerner AM, Beqaj SH, Deeter RG and Fitzgerald JT. IgM serum antibodies to human cytomegalovirus nonstructural gene products p52 and CM2 (UL44 and UL57) are uniquely present in a subset of patients with chronic fatigue syndrome. In Vivo. 2002;16:153-160. This is an enlightening study. In many CFS patients in whom our work implies an EBV or HCMV single infection or EBV-HCMV co-infection cause for CFS illness, normal means for diagnosis by blood tests or virus isolation (including those using polymerase chain reactions) are negative. In this study, we show a definitive new means of HCMV multiplication in HCMV subset of CFS patients. The p52 and CM2 HCMV IgM antibodies were present in 16 CFS patients, and were not present in 77 control patients. These data provide strong evidence for a virus etiology for CFS illness and provide strong evidence for antiviral treatment of CFS patients.

10 Lerner AM, Deeter RG, O’Neill W, Dworkin HJ, Zervos M, Beqaj, SH, Chang CH, and Fitzgerald JT. “Cardiac and virologic issues” pp 304-330 from Handbook of Chronic Fatigue Syndrome. Jason LA, Fennell PA, and Raylor RR. John Wiley & Sons, Inc. We describe studies spanning over a decade which support the paradigm that CFS is a prolonged infectious mononucleosis due to Epstein-Barr virus, cytomegalovirus or the two viruses in co-infection. This paradigm suggests that CFS patients’own immune defenses prevent complete virus formation, and that only parts of the virus’genetic material are expressed. Cardiac involvement leads to rapid heart pumping at rest (tachycardia) and eventually cardiac muscle pump weakening. Specific antiviral treatment has led to remarkable sustained improvement in CFS patients so that criteria for the diagnosis of CFS are no longer present. Medical testing by Holter monitoring, MUGA, nuclear stress testing, cardiac biopsy, virus serologic tests and disappearance of symptoms of CFS support this paradigm.

11 Lerner AM, Beqaj S, Deeter RG, and Fitzgerald JT. IgM serum antibodies to Epstein-Barr Virus are uniquely present in a subset of patients with the chronic fatigue syndrome. In Vivo.2004;18:101-106. A subset of CFS patients and specific diagnostic serum antibodies to cytomegalovirus HCMV) non-structural gene products p52 and CM2 (UL 44 and UL 57) indicate incomplete HCMV persistent multiplication. The results suggest that specific antiviral HCMV treatment is beneficial. A second Epstein-Barr Virus (EBV) distinct subset of CFS is defined. Fifty-eight CFS patients and 68 non-CFS matched controls were studied. Serum antibodies to EBV viral capsid antigen (VCA IgM and EBV Early Viral Antigen, diffuse (EA, D) as well as HCMV (V), IgM and IgG; VP (sucrose density purified V); p52 and CM2, IgM serum antibodies were assayed. Serum EBV VCA IgM positive antibody titers were identified in 33 CFS patients (Group A subset EBV VCA IgM, 62.3, neg < 20). EBV VCA IgM titers remained positive in CFS patients for 24-42 months.

12 Lerner AM, Dworkin HJ, Sayyed T, Chang CH, Fitzgerald JT, Beqaj S, Deeter RG, Goldstein J., Gottipolu P and O’Neill W. Prevalence of abnormal cardiac wall motion in the cardiomyopathy associated with incomplete multiplication of Epstein-Barr Virus and/or cytomegalovirus in patients with chronic fatigue syndrome. In Vivo. 2004;18:417-424. This is a prospective consecutive case control study from 1987-1999 of cardiac dynamics measured by radionuclide, ventriculography in 98 CFS patients. Controls were 191 patients with various malignancies who were evaluated in protocols requiring radionuclide ventriculography before initiation of cardiotoxic chemotherapeutic agents. The prevalence of abnormal cardiac wall motion (ACWM) in CFS patients was 10 of 87 (11.5%). With stress exercise, 21 CFS patients (24.1%) demonstrated ACWM. Cardiac biopsies in 3 CFS patients with ACWM showed a cardiomyopathy. ACWM in the controls at rest was present in 4 of 191 patients (2%) (p=0.0018). A progressive cardiomyopathy associated with EBV and/or HCMV multiplication is present in CFS patients.

13 Beqaj SH, Lerner AM, Fitzgerald JT. Immunoassay with cytomegalovirus early antigens from gene products p52 and CM2 (UL44 and UL57) detect active infection in patients with chronic fatigue syndrome. J. Clin. Pathol. 2007 Nov 23. AIMS: The purpose of this study is to demonstrate that the use of recombinant early antigens for detection of antibodies to cytomegalovirus (HCMV) gene products CM2 (UL44, UL57) and p52 (UL44) is specific in the diagnosis and differentiation of active HCMV infection in a subset of patients with chronic fatigue syndrome (CFS) which is often missed by the current ELISA assay that uses crude viral lysate antigen. METHODS: At a single clinic from 1999 - 2001 a total of 4,774 serologic tests were performed in 1135 CFS patients using two immunoassays; Copalis immunoassay and ELISA immunoassay. The Copalis immunoassay utilized HCMV Early gene products of UL44 and UL57 recombinant antigens for detection of HCMV IgM antibody, and viral capsid antigen for detection of HCMV IgG antibody. The ELISA immunoassay utilized viral crude lysate as antigen for detection of both HCMV IgG and IgM. RESULTS: Of the total, 1135 CFS patients, 517 patients (45.6%) were positive for HCMV IgG by both HCMV IgG by both assays. Of these, twelve CFS patients (2.2%) were positive for HCMV(V) IgM serum antibody by HCMV ELISA assay, and 61 CFS patients (11.8%) were positive for IgM HCMV serum antibody by Copalis assays. The Copalis assay that uses HCMV early recombinant gene products CM2 (UL44, UL57) and p52 (UL44) in comparison with ELISA was 98% specific. CONCLUSIONS: Immunoassays that use Early Antigen recombinant HCMV CM2 and p52 are five times more sensitive than HCMV ELISA assay using viral lysate and are specific in the detection and differentiation of active HCMV infection in a subset of CFS patients.

14 Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir treatment in Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up. In Vivo. 2007 Sep-Oct;21(5):707-13. BACKGROUND: We hypothesized that subset classification of Epstein-Barr virus (EBV) in chronic fatigue syndrome (CFS) is required. At first, a blinded-random placebo-controlled trial of valacyclovir in EBV CFS subset was performed (Group 1), and this EBV subset was followed for thirty-six months (Group 2). Patients were given valacyclovir at 14.3 mg/kg every 6 hours. The validated Energy Index (EI) point score assessing physical functional capacity, Holter monitor, multigated (radionuclide) MUGA rest/stress ventriculographic examination, EBV serum IgM viral capsid antibodies (VCA), and EBV early antigen diffuse (EA) were followed. After six-months, Group 1 CFS patients receiving valacyclovir experienced an increased mean least square EI point score +1.12 units (122 kcal/day), while the placebo cohort increased +0.42 EI units (65 kcal/day). EI point scores at Group 2 increased progressively. Sinus tachycardias decreased and abnormal cardiac wall motion improved. Serum antibody titers to EBV VCA IgM decreased. Patients resumed normal activities. Rescindinc (talk) 23:49, 4 January 2009 (UTC)

Every single one of these studies is by Lerner. Nobody else has replicated this. In fact, the consensus among the scientific community is that viruses are not the cause of CFS, only a trigger at most. I think this falls under WP:Fringe --sciencewatcher (talk) 23:51, 4 January 2009 (UTC)

First, to assume a single cause of CFS "not THE cause" instead of "not A cause" indicates that you are applying the wrong model. Virus are not THE cause of Cancer, some virii are statistically associated with some forms of cancers is a correct statement. CFIDS is not one illness, it is a catch all for all illness that have a subset of symptoms from the same criteria set and which conventional medical practise cannot sub-categorize nor treat. It is the edge of the known medical universe/compentancy.

Within it there are many subgroups, just like with cancer. Second, I would suggest looking at Ampligen, which is an antiviral, which has been approved in Canada and Spain for use for CFIDS on an experimental basis. Personally I'm not crazy about it, but with proper testing for Rnase-L levels, it seems to be helpful. Returning to your assertions, show me a study that attempted to replicate Lener's work and found no impact? Your claim speaks to an issue of non-funding, not non-significance. It is not evidence based.

If anything, your post could be deemed to be defamatory against Lerner unless you can produce studies that tried to closely replicate his work and failed.

Lassesen (talk) 00:51, 5 January 2009 (UTC)

Montoya has replicated the HHV-6 studies. De Meirleir, Chia, Kerr, Peterson et al have all shown that if you can defeat the active infection (be it viral or bacterial), you can defeat CFS:

http://www.scivee.tv/node/7965/video

Rescindinc (talk) 01:08, 5 January 2009 (UTC)

Sciencewatcher, the standard for Treatment (separate Article I suggest) established is an RCT (random controlled trial or equivalent) published in a peer reviewed journal, repeatability is a bar too high to jump in CFS treatment. To my knowledge only EFA’s have achieved this unless you count therapies. The fact that research in any area is only conducted by one or two researchers does not reflect the credibility of the work, more the funding available, such that if one researcher is funded another may not. Jagra (talk) 03:13, 5 January 2009 (UTC)

An RCT would certainly be worth mentioning, but I don't see any from Lerner. 11 patients doesn't constitute an RCT. --sciencewatcher (talk) 14:35, 5 January 2009 (UTC)

Correct not an RCT but a gold-standard double-blinded, placebo-controlled, phase III crossover study of patients with CFS (a higher standard than CBT trials for instance) here although small is worth mentioning in the Treatment Article suitably Qualified of course. Jagra (talk) 02:04, 6 January 2009 (UTC)

That link seems to be missing some results. It gives EI and symptom scores for the placebo group after 6 months, but no results for the treatment group. They then compare the placebo group AFTER the placebo group has been given the treatment. It all seems very strange - why don't they give the results for treatment vs placebo? --sciencewatcher (talk) 02:55, 6 January 2009 (UTC)

Well the study does go for 18 months and the figures are given for 12 and 18 months. The 6 month figure seems to be to determine placebo effect. The authors do say some data analysis is unpublished, perhaps you should contact them? Jagra (talk) 01:14, 7 January 2009 (UTC)

It's a pretty basic piece of info and I shouldn't have to contact them. But from what they do say, in the 6 months after treatment you can see that the improvement is virtually the same as the improvement from 6 months on placebo. Of course this doesn't prove anything because you're not comparing anything that can be compared, but if did want to draw a conclusion it would be that the treatment is no better than placebo. But as there are only 4 patients in the placebo arm you couldn't really draw much of a conclusion anyway even if the results were positive. It seems to me this is a case of clutching at straws because you want the results to be positive. --sciencewatcher (talk) 04:32, 7 January 2009 (UTC)

The symptom score gives a more complete picture of results and by study design i would say all patients at some time were on placebo! Thus your conclusion is not valid, however I agree that publishing more data would have been useful. Jagra (talk) 00:14, 9 January 2009 (UTC)

What do the recent reviews have to say about antiretrovirals? There's at least two aren't there? The Lancet and Journal of Gastroenterology I think? WLU (t) (c) Wikipedia's rules:^simple/_complex 02:11, 11 January 2009 (UTC)

Virus and Bacteria Hypotheses

Latest comment: 15 years ago9 comments4 people in discussion

It seems that there has been a new finding on the virus etiology of CFS, if this report has any credibility? This recent news release, [6] on a new virus associated with Shingles in CFS, may well explain a CFS subgroup? Well yes, a long way to go but;

- If nothing else it goes to show the shortage of funding when researchers have to appeal for funds from the public on TV!

- Would it not be ironic if these findings prove to be the link between CFS (as US research) and the post-mortum findings of ME patients such as Sophia Mirza? Jagra (talk) 03:13, 5 January 2009 (UTC)

It is interesting that eMedicine's Chronic Fatigue Syndrome: Treatment & Medication by a Prof of Medicine, updated Jul 16, 2008 cites both viral and bacterial infections. Medications cited include Antibiotics, yet to mention Antibiotics in this article results in it being deleted. Deleting alternative opinion is cited as a inappropriate.

What are the REFERENCE TEXT BOOKS for CFIDS? I would assert that these two texts are what exists:

Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances; (Hardcover, 2000) by Roberto Patarca Montero , Kenny De Meirleir
The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome (Hardcover, 1992)

by Jay A. Goldstein (Editor), Byron M. Hyde (Editor), Of course, I am open to counter recommendations or additional texts..... We need to establish clearly what the reference texts are.

I would support these sources as "standard medical textbooks" on the subject of ME/CFS/CFIDS Jagra (talk) 00:56, 6 January 2009 (UTC)

The virus hypothesis is in article all ready, research in mechanism section. Antibiotics do not have recognize in major journal reviews. The bar is higher then a news release for WP medical articles. RetroS1mone talk 05:26, 6 January 2009 (UTC)

Thank you I will be reviewing same, and as I said above Well yes, a long way to go but; No-one has suggested it is a RS for CFS Article but it would be RS in other wiki Articles where news reports are cited, and by a long tradition (not that i expect you to be familiar, so for your edification) is an acceptable item for discussion on this page. Jagra (talk) 00:58, 7 January 2009 (UTC)

A previous version here of CFS Pathophysiology had an extensive listing of studies on bacterial involvement in causing and complicating CFS and a previous treatment subarticle had treatments. Jagra (talk) 03:46, 8 January 2009 (UTC)

I'm coming here from outside this page, in response to the RfC. I have an extensive academic background in biomedical research. It seems clear to me from reading the extensive discussion on this talk page that the microbial hypotheses are somewhere between preliminary and fringe. As a way of finding a reasonable balance between the views of differing editors, I see nothing wrong with briefly mentioning these hypotheses and citing a few sources, but identifying them as not being widely accepted by the scientific community at this time. If, later, the hypotheses gain more acceptance, one can always edit the page further to reflect that, but for now, anything more than a brief mention would be inappropriate and irresponsible. --Tryptofish (talk) 16:15, 8 January 2009 (UTC)

Thank you Tryptofish, for the comments, but can you point to any other hypotheses for CFS that is not preliminary? Therefore each is entitled to be adequately discussed. Even the pro-psch lobby admit on this page that the upper limit of acceptance for their hypothesis is 50% and that is contested to less than 25%, As to fringe, most of these sources are published in mainstream journals and therefore not fringe, widely accepted by the scientific community is not a realistic criteria in this matter. History section will show this page is edited further, often only to reflect a change of balance among editors, not the wider scientific community in my experience. Jagra (talk) 23:57, 8 January 2009 (UTC)

My understanding of the RfC is that it was placed in response to all mention of the microbial hypotheses being repeatedly deleted in their entirety. My suggestion was that they should be included, just not at length. It sure sounds like the editors here have been disagreeing about what is or is not a "mainstream journal," but I suggest that if you all can get to the point of agreeing that the hypotheses can be included, then the subsequent issue of how prominently to present them is something that might be worked out more easily over time, as new research comes in. --Tryptofish (talk) 14:57, 9 January 2009 (UTC)

I will point out that news sources are cited in MEDRS as something to specifically avoid citing - Wikipedia:MEDRS#Popular_press. The eMedicine link is dead for me, and the two books published above are both somewhat old - Hyde is from 1992 (17 years), Meirleir in 2000 (nearly 10). Also from Haworth press, which again suggests it may be problematic but doesn't discount it. A better solution would be citing more recent books. Here is one from 2008, published by McGraw-Hill. I'm certain there are more. Note that it also supports some key ideas under dispute - CBT and GET are effective, mood disorders are common, immune system modulators aren't very helpful. Lippincott Williams & Wilkins also has a book with a preview on google books [7]. Cambridge University Press has a book as well - [8]. As more recent and more reliable publications, they easily trump Hyde and Meirleir for at least basic information. WLU (t) (c) Wikipedia's rules:^simple/_complex 03:10, 11 January 2009 (UTC)

Reliable Sources

Latest comment: 15 years ago66 comments10 people in discussion

There is considerable disagreement over what is a reliable source for CFIDS. It is proposed that the following be deemed to be reliable source for citation for CFIDS.

Peer Review Specialist Journals, such as Journal of Chronic Fatigue Syndrome
Collections of articles from peer-review journals publish in book form, example Hyde (the only self-publish aspect is the selection of articles and I think one short article). "widely recognised standard textbooks written by experts in a field"
Proceeding and Papers presented at CFIDS Conferences including the following ones: CFIDS Association of America, American Association for Chronic Fatigue Syndrome

In general the following criteria should be used to prevent non-researchers tossing in their own bias. If a researcher publishs in a journal or presents at a conference then either we deem the researcher to be unreliable and thus by inference

any journal they publish in, or conference they present at should be deem unreliable, and other authors that publish there are also deemed unreliable

OR we deem the research reliable

any journal they publish in, or conference they present at should be deem reliable.

The researcher by publishing in a journal or presenting at a conference is making a clear statement about its significance, importance and reliability. Without an objective criteria that may be easily used by other authors, the different POV will result in this article becoming a battleground. It is not for the editors or authors of this article to arbitary make judgment calls on the content, deeming ideas they dislike as not reliable and items they like as reliable. —Preceding unsigned comment added by Lassesen (talk • contribs) 01:23, 5 January 2009 (UTC)

The following are proposed experts in the field (it is essential to establish who are the experts to reduce disagreements):

Dr Byron Hyde
Dr. David S Bell
Dr. Dan Peteron
Dr. Paul Cheney
Dr. Cecile Jadin
Prof Garth Nicolson
Dr. Nancy Klimas
Dr. K De Meirleir
Dr. Daniel Amen (SPECT analysis of CFIDS)

Are there additional experts people would like to nominate? Minimum requirement is a M.D.

Lassesen (talk) 01:43, 5 January 2009 (UTC)

Lassesen it is not for voting what sources we can use, we use the same sources other medical articles use, top journals and mostly reviews from them by experts in field. People that publish in Lancet BMJ and stuff. RetroS1mone talk 02:16, 5 January 2009 (UTC)

I am not attacking these people Lassesen i am thinking they are good people and scientists but look,

Hyde B no primary research, a letter to the editor in Lancet in 1988 and an essay in low impact report in 1991.
Bell DS four papers last in 2003
Peterson DL, six or seven papers last in 2002
Cheney PR five or six papers last in 1997
Jadin CL Nothing on Pubmed, i think is alternative medicine person on websites

It is becoming evident that you are really not familar with anything but the ability to search PubMed, BMJ and journals -- i.e. a librarian. She is definitely not an alternative medicine person, but a surgeon who grew up around Charles Nicolle (Noble Prize) Paul Giroud, JB Jadin (her father) and Legac of the Pasteur Institute. She is in fact very very old school. You have confirm your ignorance of the experts in the field -- you are guessing based on simplistic rules being mechanically apply. I.e. an absence of knowledge that will likely do this article more harm than good I am sorry to say.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

Garth Nicolson, two primary research articles in low impact journals and says he finds mycoplasma in blood from CFS people. Thing is, mycoplasma is everywhere, lots of healthy people have evidence from it.

I am oblige to make several points

first, you appear to be trying to get a discussion of the topic by challenging research -- inappropropriate
second, emedicine is in major disagreement about you opinion [ http://emedicine.medscape.com/article/223609-overview "Although scientists have isolated at least 17 species of Mycoplasma from humans, 4 types of organisms are responsible for most clinically significant infections that may come to the attention of practicing physicians."], I see at 6 more authors there stating the same thing. You have made a major point concerning your medical knowledge (lack of, that is), and should really move on to different waters....
third, you also are clearly showing a significant bias and intolerance of alternative POV, and because of that should gracefully move on elsewhere.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

Klimas N, 20 pub lications since 1990 mid to low journals
De Meirleir K, 40 publications in mid to low journals like including SIX in Medical Hypotheses
Amen D no pubmed results

Pls do not mistake activity on activist websites and publishing in activist newsletter as expertise for WP, you have some very good interesting ideas but WP is not looking for cutting edge radical ideas it is from people that are mainstream, when you change that and prove the RNase L thing or what ever is cause of CFS or antibiotics cure it then it will be reviewed in Lancet and WP puts it up with your name on it! RetroS1mone talk 02:58, 5 January 2009 (UTC)

Again, the point is avoided with polemics. WP for medical articles cites experts --- I am asking for discussion on who the experts are -- you are declining to answer/present your experts. Avoidance?

If you are an editor or contributor on this article, you should have no problem providing your recommended list for:

Experts in this area, MD's of course, because this is a medical topic. For example, Dr. Amen is a MD, Distinguished Fellow of the American Psychiatric Association, Assistant Clinical Professor of Psychiatry and Human Behavior UC, Irvine , School of Medicine, board-certified ( American Board of Psychiatry and Neurology ) in child and adult psychiatry -- with my last conversation with him, he did not advocate CBT for CFIDS but does advocate a program that deals with the infections and brain trauma seen on SPECT.
Text Books on the condition, not books that mention it in passing, but books that are on this topic alone
Journals specializing in this condition

If you and other editors that delete freely (aka censors) are unable or unwilling to disclose your list, then this may be an item to refer to mediation ASAP. We need to get the foundations laid and fully disclosed.

Lassesen (talk) 05:21, 5 January 2009 (UTC)

How did Retro get 40 publications for "De Meirleir K" in PubMed? I get 80, with 6 reviews. Google Scholar shows 207. Further, he has at least one book on the subject published by CRC Press. Also, just because you haven't heard of a journal doesn't mean it's a "low or mid" level journal. Specialized journals are often preferred in the actual fields, because specialists tend to read them more than they read the general journals like Lancet. According to this article, Merleir has published more than at least 600 articles and sees 3000-4000 patients annually. The 600 figure may be exaggerated, but he likely has several articles in scholarly books. I haven't checked any of the other people you brought up. I have a feeling we're projecting our amateur impressions onto the field. It seems as if two of the most vocal people on this page, sciencewatcher and RetroS1mone, are imposing their limited worldview on this article very forcefully, and are rather quick to dismiss and delete credentialed people who are in the thick of the research and have PhDs as well as MDs. The researchers have relevant views which should be reflected in the article. II | (t - c) 08:51, 5 January 2009 (UTC)

Similarly, PubMed search for immunologist "Klimas N" yields 107 publications. Her faculty profile states that she is "current President of the International Association for Chronic Fatigue Syndrome ... the principal investigator of the National Institute of Health's (NIH) Center for Multidisciplinary Studies of CFS Pathophysiology at the University of Miami ... [and] has been appointed to the inter-agency CFS Coordinating Committee, chaired by the Surgeon General of the United States". 3 books and 19 invited chapters. She has a recent 2007 review, PMID 18177602, which I don't have access to. I think this shows that we have to take RetroS1mone's word with a heavy grain of salt.

Both Klimas and Meirleir are editors of the JCFS. Clearly it's not that these people, and that journal, is fringe. Who knows why it's not indexed in PubMed. And really, it doesn't matter much, since it doesn't seem to have many reviews anyway. II | (t - c) 09:36, 5 January 2009 (UTC)

Two request, please sign your name when you submit and pls indent with colon so we follow the discussion better. Thx!

OK, I searched on these people and chronic fatigue. Example, Simon Wessely has more then 400 articles, only 120 of them about CFS so when we talk about his CFS work the 120 is important. Klimas is hard bc she some times uses Klimas N and Klimas NG, not all Klimas N on Pub Med is Nancy Klimas. And by the way not every thing on Pub Med is really med rs, look at Medical Hypotheses where De Meirleir has so many papers just one example.

But who cares my point was, we do not make a list from accepted experts and we do not vote on it, all of the people from the list by Lassesel but may be Klimas and De Meirleir are just publishing not much and mostly together with each other. Some CFS researchers a minority have a fringe view. Their fringe view is may be right!! Five years from today De Meirleir can have the Noble Prize for curing CFS!! It is not matter for the article today, we can not see into future so we use WP:MEDRS, not by people's resume and what organization they started, not by "my last conversation" with some one, not by OR and POV. WP is for the general reader, not for specialists in a fringe of a field.

WP does not have a test for who can edit, except edits should be in WP guidelines. De Meirleir or Jason and RetroS1mone are equal on WP, they do not have to be MD or give a list of experts they like. You can think I am dumb that is OK!! You can take me "with a heavy grain of salt" but we need go on WP guidelines, not hectoring by people who say they are experts in field.

Final let us pls forget the JCFS it is just not MEDRS. There are 4000 articles, 1000 reviews on CFS on Pubmed and some are in very good journals. It is just not true, people that research CFS publish just in specialist journals so we need to use them. It seems for me some people started a journal to publish stuff they could not get published other places, there is nothing wrong with that it is great! But we need the general medical opinion on WP, not the may be very good but very specialist ideas from an obscure journal not on Pubmed. Also alot of the more obscure stuff is in the subarticles now.

People really I am not slamming your research it is great and pls keep up and thank you for what you do!! But it is not main-stream yet and when you want to put it on, pls have a good review from a top journal like Lancet or BMJ. Thx. RetroS1mone talk 13:10, 5 January 2009 (UTC)

Retro, you are definitely struggling hard in your attempt to sound knowledgable, but per what was evident above, you are using rhetoric tricks to try winning an argument instead of reason. You appear ignorance of much of the literature on Chronic Fatigue Syndrome (you demonstrated that above), you have low / no tolerance for alternative POV, you have poor medical knowledge (demonstrated by your comments on mycoplasma). May I serious recommend firing your retros and changing orbit, perhaps elsewhere? The rest of your rhetorical comments are not worth answering -- it's a waste of my time.

Lassesen (talk) 14:37, 5 January 2009 (UTC)

Not only does there seem to be disagreement over what is reliable source, but also about what is allowed to be mentioned from reliable secondary sources. - Tekaphor (TALK) 09:05, 6 January 2009 (UTC)

BMJ Clinical Evidence is "one of the world's most authoritative medical resources for informing treatment decisions and improving patient care." [9] The CFS Clinical guide (= headline message) says of CBT: "There is moderate evidence of benefit for CBT in CFS. The effectiveness of CBT for CFS outside of specialist settings has been questioned. The results of the multi-centre RCT [29] suggest that CBT may be effective when administered by less-experienced therapists with adequate supervision." The quality of the trial evidence of interventions was assessed using GRADE, and the CBT trials were rated "low" or "very low" quality [10] Where are those strong caveats ("moderate evidence" "effectiveness...questioned" "low quality") on WP?

Patient UK [11] is a reliable site (listed by www.direct.gov.uk) that gives "The same info as provided by GPs to patients during consultations." Their CBT info states "One problem is that CBT is not widely available in the UK on the NHS. If it is available in your area, it is certainly worth considering in addition to any other treatment. Also, like graded exercise, the research studies did not include those who were severely affected with CFS/ME and it is not known if it will help in this situation. Also, some people who start a course of CBT (for any condition) drop out of the course for one reason or another as CBT does not suit everybody." [12] Reasonable caveats, so why are they not mentioned here?

In general, I prefer nationally agreed guidelines and info sources like these to single journal articles, which are often polemical in intent if not in expression, and should be used to inform an encyclopedia article but not to substitute for editorial control. Sam Weller (talk) 11:15, 7 January 2009 (UTC)

Text Books

I added a section of what appears to be the major collections. Some one proceed to add a book that they appear passionate about -- unfortunately it is not a collection but a POV work of two authors. I have removed it. I believe to maintain a NPOV we need to avoid all books that are individual works of authors and not collections of the most significant authors. Example, Hyde's book required over 100 authors to consent to republish their articles. It means that 100 authors (and often their publishers!) supported this collection. A rather strong statement of the importance of the collection and also the expertise and expert's respect of the editors of the collection.

I am hoping this will establish a rational NPOV for this entry. To dismission the collection is implying that you are dismissing all of the authors that consented to be included. Lassesen (talk) 16:54, 7 January 2009 (UTC)

ScienceWatcher just added the single POV back in and deleted one that does not agree with his POV. It almost appears the Michael8564 (just created login today!) and ScienceWatcher may be the same person.

Lassesen (talk) 17:03, 7 January 2009 (UTC)

If a textbook meets WP:MEDRS then I think we need a very good reason to ban it. On what policy or consensus are you excluding books? I do not agree with the conclusions Lassesen reaches above, as textbooks by a single or few authors (note textbook is a single word) can often be the seminal work in a field. Classing all such works as POV is, well, POV! Verbal chat 18:00, 7 January 2009 (UTC)

Meeting the WP:MEDRS is a subjective decision, with many books banned without any reason but a vague 'Not Reliable'. I am in agreement with you for general medical books; My biggest objection is slamming of books on fragile grounds without explanation. I went very conservative on the choice of books, keeping only ones that have divergence POVs in them. ScienceWatcher is imposing his POV and preventing alternative POV from being posted IMHO. He is on a crusade.

Lassesen (talk) 18:47, 7 January 2009 (UTC)

No, I'm not the same user as Michael8564, and for future reference I never use a different username on wikipedia. I do occasionally log on as my ip address, mostly on articles related to my hometown, but never on the same articles I edit as User:Sciencewatcher. Anyway, as for the textbooks: the "CFS/ME: the facts" book is published by a respected academic publisher and written by experts. And you don't need to have hundreds of contributors for it to be an authoritative textbook. The Hyde book is self-published and the authors are not academics as far as I know. Perhaps the Hyde book fits in more with your POV, but that is no reason to include it at the expense of more authoratitive textbooks. As Verbal says, we should be including books only based on WP:MEDRS. The Sharpe book meets this criteria, but I don't think the Hyde one does. --sciencewatcher (talk) 18:06, 7 January 2009 (UTC)

The problem is that you slam books without cracking the cover. The choice of articles was reviewed by Paul Levine, M.D., National Institute of Health, a key player in defining Chronic Fatigue Syndrome, who provided a foreword. You are painting the book with tar and feathers to advocate your own POV. Single author (thus single POV) books should not be deemed textbooks for this illness -- We need a decider and I am deeming what the CDC deems reliable or contribute to as being reliable and expert. Anyone recieving a grant from the CDC should be deem to be an expert. You argue without any reference to external authorities --- only your own words. Please provide the authority that you are working off. Note I use the word AUTHORITY and not expert. National department of health are authorities.

What is the problem that you are having with restricting books to only collection of articles (say with 10 different authors being needed?) so we have some NPOV. Advocating any single author is advocating a POV with this disorder Lassesen (talk) 18:39, 7 January 2009 (UTC)

Your interpretation of "POV" and reliable sources is somewhat at odds with the usual wp definition, so in order to adopt your versions you'll have to demonstrate consensus for them. At the moment this isn't the case. Having one or two authors does not make a book or paper a POV source. I also agree with SW in the section below this. Verbal chat 19:17, 7 January 2009 (UTC)

The Facts: Does not appear to be a textbook in intent

Chronic Fatigue Syndrome (CFS/ME): The Facts, Frankie Campling, Michael Sharpe, 2000, Oxford University Press, ISBN 9780192630490 The following quote indicates that it is a patient information book, p. 36

"What do I do if I have been given one of these diagnoses?

Discuss it with your doctor ....."

I believe it should be removed -- please rationalize it inclusion as a textbock in the next 48 hours. I would advocate adding a 'Patient Information' section and place it there as a more appropriate handling Lassesen (talk) 20:19, 7 January 2009 (UTC)

It meets WP:MEDRS, I see no coherent reason for it to be excluded. Time limits of that sort are not usually used on wikipedia, as they are seen as confrontational.Verbal chat 20:31, 7 January 2009 (UTC)

Verbal, you mean this book catergorized a "popular works" at this worldcat site meets the "standard medical text book' definition of WP:MEDRS? IMO nonsense but if others can confirm this i will be happy to work to this definition in future, as it allow will just about any popular title with CFS in it! Jagra (talk) 00:18, 8 January 2009 (UTC)

sciencewatcher, on what grounds do you claim the Nightingale book is The Hyde book is self-published and the authors are not academics as far as I know. this is a nonsense and even POV propaganda. Any reading of the book will indicate many many academics among the 125 authors and 75 chapters. Furthermore it is clearly published by the Nightingale Foundation as its ISBN 0969566204 entry will show. Editors were Dr Byron Hyde, who wrote 2 papers Dr. Jay Goldstein of the CFS Institute California and Dr. Paul Levine of the National Institute of Health (NIH) USA The editorial panel clearly were qualified for peer review. Comments by specialist peer reviewers are included at the conclusion of some papers including Hyde paper. Furthermore The publication was funded by some 12 Principal benefactors and 20 benefactors, 35 others provided significant assistance and some 115 provided some financial assistance. All are listed in the publication, and it does not include the authors. It contains many reviews by experts and This WP:MEDRS discussion indicates that conference papers may not always be peer reviewed but conference papers included in a journal supplement or published with a medical and scientific editing process (such as in a medical book like this ) can be considered peer reviewed. So explain your POV Jagra (talk) 00:18, 8 January 2009 (UTC)

Nightingale Foundation is Byron Hyde's charity, therefore self published. I could set up my own charity by filling in a few forms, but it wouldn't mean my charity's books would be reliable sources. And in future, please keep your comments civil, thanks. --sciencewatcher (talk) 01:44, 8 January 2009 (UTC)

SW --- Civil? Like deleting the entire textbook section with our discussion "RetroS1mone (Talk | contribs) (67,289 bytes) (→Textbooks: change to further reading, remove OR about principal textbooks who says they are textbooks what courses use??) (undo) "

Look, I have tried to build consensus --- build a common foundation, in a positive manner --- asked you for your suggestions of a list of experts and textbooks. You have made any suggestions -- instead you delete without discussion or explanation.

Lassesen (talk) 02:03, 8 January 2009 (UTC)

First of all, that change was by Retro, not me, and secondly she didn't even "delete the entire textbook section", she renamed it. And third I have not deleted anything without discussion or explanation. Your behaviour here is starting to become disruptive. --sciencewatcher (talk) 03:43, 8 January 2009 (UTC)

SW , Nightingale Foundation is Byron Hyde's charity A Foundation has a seperate legal identity to Byron Hyde and any other person, and will survive him and other directors. Your comment means nought, It is controlled by a Board of Directors, 10 of which are listed in the book of which 5 are doctors, does that mean it is also each directors foundation? please do not obfuscate with propoganda, give meaningful answers so that this serious allergation can be addressed.Jagra (talk) 02:19, 8 January 2009 (UTC)

Well here's the answer to yer allergation...

I know what a charity is. My wife is the president of a Canadian non-profit which is in the process of becoming a charity and has something like 5 directors, and I have been a company director/owner for over 11 years. A foundation is just another name for a non-profit organization. Byron Hyde is the founder of "his" charity. Anyway the point is that a charity isn't a MEDRS, whereas an academic publisher, such as OUP or Wiley, is. --sciencewatcher (talk) 02:57, 8 January 2009 (UTC)

OK show me where MEDRS says a foundation as publisher is not on, when it contains papers presented at an International Conference on CFS, written by experts, academics, edited and peer reviewed by respected medical and scientific experts, containing RCT trials and reviews by experts and referenced extensively. How is this different to medical textbooks printed in the third world? Jagra (talk) 03:21, 8 January 2009 (UTC)

It doesn't say anywhere. The MEDRS page doesn't say exactly what is and what isn't a reliable source, it just gives guidelines and a few examples...you need to use your judgement. If you want, bring it up at the reliable sources noticeboard, if it hasn't been discussed already (and if my memory serves, I think it might have been). --sciencewatcher (talk) 03:33, 8 January 2009 (UTC)

No, so we are in agreement, it is not self-published and it is only your opinion that it is not MEDRS. Jagra (talk) 23:43, 8 January 2009 (UTC)

What is being argued about? Campling & Sharpe is used exactly once in the page, as one of three citations for a sentence in the history section. It is also included in the further reading section - I would remove it from there as it is now about 9 years old and probably superseded. If you're talking about Hyde's Nightingale Research Foundation book published in 1990, it's a self-published source that is nearly 20 years old now. It may be good for historical information, but that's about it. As a self-published source, it's also a dubious inclusion as the oversight is minimal in a self-published publication and Hyde is the only editor. Hyde himself is a fringe theorist within CFS - minimal publications in MEDRS and little in the recent past. His credibility is dubious for any controversial information, though he can be used to illustrate substantial minority positions. Again, if his ideas were mainstream, they should be substantially expanded upon since 1990 if they had any support and it is those sources we should be citing. If people are arguing just to argue, it should stop. A section called "textbooks" is inappropriate, though further reading is (see the guide to layout). WLU (t) (c) Wikipedia's rules:^simple/_complex 21:27, 10 January 2009 (UTC)

Academics

Sciencewatcher has stated above that he believes all experts should be academics --- not researchers, not MDs who are well experienced (in some cases 20+ years of full time treatment almost exclusively of this disorder). I believe this points out the problem --- he's believes academics are gods.... I am in major disagreement and the WP:MEDRS does not support this odd spin. Lassesen (talk) 18:53, 7 January 2009 (UTC)

Poor choice of words. What I meant was respected experts, rather than self-appointed experts. I don't dispute Levine is an expert, and if the book was edited by him alone and published by an academic publisher, I wouldn't have a problem. And as for your comment about POVs: having 100 contributors doesn't stop it from being POV. If the editor has a POV then obviously that will influence their selection of articles. What is important is the reliability of the source, and as far as I am aware MEDRS doesn't say that collections are better than works written by one or two authors. --sciencewatcher (talk) 19:12, 7 January 2009 (UTC)

How do you determine 'reliable'? Are MD presenters at most of this disorder's conferences experts or not experts? These conferences do have a high percentage of patient attendance -- but that has nothing to do with reliability.Lassesen (talk) 20:35, 7 January 2009 (UTC)

Look at WP:MEDRS and WP:RS. There is a reliable source noticeboard where you can ask for a broader consensus. Usually high impact factor and well respected journals such as Lancet, BMJ, Nature are obviously reliable sources. Others might require a bit of discussion first. Just being an MD or PhD working in an area doesn't make you an expert. Verbal chat 20:42, 7 January 2009 (UTC)

Can you please explain to me how you see it matching?

"widely recognised standard textbooks written by experts in a field" to me, mean books intended for clinical use or at University and not patient use. This book is clearly not such.
"medical guidelines and position statements from nationally or internationally reputable expert bodies" -- there is no body associated with this ( OUP is not a body).
Reading through pages, it is not primary, nor seconday and questionable if it is a tertiary source

I want to know clearly where, because if the bar is as low as I view it, I have 40 books to add to the list.

Lassesen (talk) 23:48, 7 January 2009 (UTC)

Reliability is primarily the degree of oversight placed on the publication and WP:MEDRS is the most important guideline for the CFS page. Personal webpages are about the bottom of the pile and nearly useless. Self-published books and vanity press are not much higher. They're only really useful if it is a recognized expert, and even then it is problematic because if they're recognized experts, why aren't they publishing in a mainstream journal? Newspapers and popular press are probably next, but are discouraged for medical articles. Next up is journals with editorial boards but no peer review (i.e. JCFS). But all the previous are only really useful for either very minor bits of information, minority viewpoints and other issues impacted by WP:UNDUE. Then it's journals a peer-review process, and highly respected academic publishers. Textbooks are in there because they report uncontroversial information. Primary, secondary and tertiary are used differently in MEDRS - primary are journals reporting on the results of an experiment - because there's a lot of them, they can easily be cherry-picked to support many controversial points. Secondary are review articles which summarize the results of many primary (in medicine) sources and are valuable because they try to resolve discrepancies between contradictory articles and review methods. Tertiary I'm less sure of. But there's a reason we should be using review articles. The two newest review articles on CFS should be reviewed for agreements and disagreements, and from those articles the page should be built. I'll try to comment later when I ahve more time. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:26, 10 January 2009 (UTC)

Byron Hyde

Several MDs have been often attacked on this discussion. May I point out that:

Handbook of Chronic Fatigue Syndrome contains an article by

him TOC

Klimas, Jadin, Bottero and Hock have articles in Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances TOC Lassesen (talk) 20:35, 7 January 2009 (UTC)

Reported attacked? Does it meet WP:MEDRS? I seem to recall it being self-published. Verbal chat 20:42, 7 January 2009 (UTC)

Self-published means publishing their own work. He did not published it, a government recognized charity with a board of directors publish it. The content is not his own work but that of over a 80 authors that consented to having their work republished --- the selection decisions was reviewed by the head of CFS studies at CDC at the time! who supplied a foreword. Using your definition, if a head of department working for the CDC has a book published by the CDC with himself as a editor -- it is self-publishing. Get a copy of the book at your Medical Library and read the foreword and check the list of authors. Scratch beneath the surface! He has published in the Lancet: Hyde BM, Bergman S (1998), Lancet, Nov 19;2(8621):1191-2, PMID 2903396

Lassesen (talk) 23:48, 7 January 2009 (UTC)

The CDC carries a lot more weight than a charity. Also, what about Jay Goldstein? Does he publish university- or government-funded research in respected peer reviewed journals? From the looks of it, he an MD who has some WP:fringe theories. --sciencewatcher (talk) 00:14, 8 January 2009 (UTC)

Verbal, self published i seem to recall!!!! this is propaganda speak, so please have the decency to explain. Yes SW and a Pubmed search for J Goldstein brings up 2097 papers, now clearly not all his, you can sort it out, but Goldstein Jay brings up 48 and in a range of mainstream journals, so much for the fringe theory smear. Jagra (talk) 01:15, 8 January 2009 (UTC)

Ha, you need to actually check those search results. A lot of those "Goldstein J"s are in London, so probably not the same person. Adding CFS to the search gives 2 results, both involving the dubious research with Lerner that is discussed above. There may be more, but I'm not entirely sure how to do the search. From the wikipedia entry "His practice utilized many different pharmaceuticals in the form of eyedrops and nasal sprays, based on the theory that they directly affect the receptors on the trigeminal nerve. Another peculiar part of his treatment protocol is the administration of several medications with a rapid onset (such as eyedrops, intravenous infusions and mouth swirls) during the course of an office visit, until the patient got better or the time ran out.". That certainly sounds like WP:Fringe! --sciencewatcher (talk) 01:33, 8 January 2009 (UTC)

What is this every one?? We do not need make a list from experts on Wikipedia. We should use top journals and at best reviews. Lassesen and others pls pls read MEDRS just once, i do not want being confrontational but it is important guideline. Also pls read selfpub, books published by an organization or by a vanity press are selfpub When there are reviews in the Hyde book and they are first published in journals then pls cite the journals not the selfpub book. So many from Lassesen's experts are publishing selfpub and with each other and just in JCFS, it is a big conspriacy against them or they are fringe. We can not say the first one except with reliable sources, i do not see them, so I am thinking fringe. RetroS1mone talk 04:29, 8 January 2009 (UTC)

No, clearly you wish to confine referencing to a few journals that either almost ignore CFS because they are highly conservative and therefore avoid controversy or others that are pro your POV, this is not NPOV. The Index you refer to is actually only a marketing tool designed to attract advertisers to high profile (not necessarily top content journals) based only on initial subscriber numbers. As many subscribers of journals are actually multiple use, it is not a true indicator of readership and therefore you are using it out of context. It certainly cannot be used to signify relevance of particular papers. Yes I have studied MEDRS and its talk page is even more enlightening, and what I see here more often than not are slanted subjective interpretations not "rules" to be quoted ad-infinitum, the intent is thus corrupted. The word 'organisation' covers corporations, thus publishers, unless partnerships, the difference between corporations, foundations, societies, academies etc are usually tax laws. There are reviews in 'Nightingale' (you calling it Hyde is POV) published only there, as a record of papers presented by highly regarded researchers at the first International CFS conference. Jagra (talk) 23:38, 8 January 2009 (UTC)

It is still self published. Nightingale was started by Hyde, a non-notable professional for WP, he ran it, Nightingale published this book on it's own, that is self-pub. That is to bad the papers are only published there. Why do people self-pub? Soem times BC they can not get their stuff published in other places. That is why the WP guidelines, so we stay on track and not do alot of fringe things, I am not saying all these people are fringe but they are not main-stream now.

Your real problems here from your comment I think is WP guidelines and the medical publishing industry, that is different problems and it is not what we are debating on talk page. Pls do not put your personal opinions about "highly conservative" and my POV and evil marketing techniks here, this is not fair, I do not even like psychology that is my personal opinion, and I would be probably very annoyed with CBT if I had it, but that is me, it does matter not on this article. This can all turn right back, next year Ampligen can be approved and the Cochrane study on drugs is out, and may be bad results from the new CBT trials, and then pendulum back to organic. But we can not change what is in medical literature today. RetroS1mone talk 06:44, 9 January 2009 (UTC)

RetroS1mone your saying there is a medical consensus the psychological view of CFS is dominant. I do not believe there is such a medical consensus. Ward20 (talk) 07:11, 9 January 2009 (UTC)

Retro, you mean it is your point of view that it is 'self-published'. I have explained at length that your deductive logic is flawed. The Publisher is a foundation called Nightingale Research foundation, with a Board of Directors that made the decision to publish, there were 3 editors, Hyde one of them, The publication was paid for by donations which did not include Editors or the authors. The Publisher, board members, editors and authors have seperate legal identities, you cannot say that one is the other therefore Hyde self-published. That is wrong both in logic and law, you will have to do better than that to convince either here or elsewhere. From what you say it is fairly obvious you have not accessed the Book but formed opinions somehow other!, for many of the 83 authors (as well as 125 clinicians, researchers and associates) and that attended the international conferance (that was not chaired by Hyde) and are indexed in the book are well known, respected and do publish elsewhere, to say they could not is one giant leap and generalisation. Please do not assume you know what my problem is and attempt to put words in my mouth, but thanks for being candid about your position. Jagra (talk) 23:24, 9 January 2009 (UTC)

Is everyone discussing Byron Hyde or the Handbook of CFS? The former published one chapter in the latter (on diagnosis), while the latter is published by John Wiley & Sons, a reliable publisher. However, that means the book can be sourced, not Hyde's naked opinion about anything related to CFS. I'm unimpressed by his publication record, since it looks to me like it consists of one article in the Lancet ten years ago. If you're talking about Hyde's naked opinion, the questions to ask are, where is it published? A book by a high-quality academic publishing company is suitable, his webpage or a self-published book are not. If it were a high-quality researcher with many recent publications in many high-quality journals like JAMA, the Lancet, BMJ, etc. then I would give more leeway to self-publication or webpages. However, being unable to publish ones' opinion in reliable sources means you are unable to convince a peer-review panel or editors of your opinions or the merits of your research. That suggests ideas that may not be fringe or pseudoscience (i.e. are based on realistic understandings of how the body and physics works) but are still not accepted by mainstream sources. If Hyde's opinion is sourced, it should be coming from a reliable source or be used cautiously in one of the less "medical" sections - social issues or history. WLU (t) (c) Wikipedia's rules:^simple/_complex 17:57, 10 January 2009 (UTC)

A google scholar search turned up 33 sources for author:Hyde "chronic fatigue syndrome". I'm unimpressed by them - old, or in the JCFS, or self-published by Nightingale press, or I can't see who the publisher is. Much of his publications seem to be from the 90's. The only one I could find that was really recent was this one from 2007 in what I believe is a primarily Spanish/Portuguese journal published in Latin America. It's about page doesn't exactly fill me with hope, and it doens't seem to be pubmed indexed. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:08, 10 January 2009 (UTC)

A short comment, the JCFS did have a peer review process while it was published.[13]

"Copyright ownership of your manuscript must be transferred officially to The Haworth Press, Inc., before we can begin the peer-review process. All authors must sign the form and return the original to the editor as soon as possible. Failure to return the copyright form in a timely fashion will result in a delay in review and subsequent publication. Copyright transfer to The Haworth Press, Inc. shall automatically revert to the author in the event the paper is not published."

Ward20 (talk) 21:43, 10 January 2009 (UTC)

The RSN discussion indicated that the review process was less than ideal (borderline incestuous - the reviewers were the editorial board were the same people publishing in the journal), and overall it's still not a very high impact journal - if any of its conclusions are contradicted by other, more reliable sources, it probably shouldn't be used. I persist in believing it's only useful for well-articulated minority views and historical information. That it is no longer published also makes it less useful as time goes by. I would perhaps use it for elaborations on ideas that are discussed and researched elsewhere, if those elaborations are not reported or researched in them. The current use seems to be only once, reporting on the creation of the Canadian definition. So is it really worth all this discussion? What other uses are being proposed? And are we discussing Hyde's 1990 book on CFS? A 20 year old book is pretty much worthless in any field. Newer sources should be sought. WLU (t) (c) Wikipedia's rules:^simple/_complex 00:21, 11 January 2009 (UTC)

<---out The RNS discussion I believe was referenced [14] was the opinion of one person with no links or evidence. Opinions are not necessarily facts. The reply the JCFS did have a peer review process was meant to reply to here were it was said the JCFS was not peer reviewed, sorry about that. I agree higher impact journals and articles than published in the JCFS should take precedence, and that the quality of articles described by WP:MEDRS is the major criteria to be followed, however that is no different than with any reference. I disagree the JCFS only useful only for well articulated minority views as WP:MEDRS does not take that position, only that the best sources available be used for the information presented. The JCFS presents a lot of material about the physiological basis of CFS. By eliminating the journal as a WP:RS (and much material has been eliminated from the article on that basis, not inclusive, [15] [16] [17] [18] [19] [20]), or unfairly giving it a lower status than it deserves, the article becomes biased. That is why it is worth discussing. An article's age may be relevant, but not the date a journal stopped publishing JCFS to 2008. The uses of the JCFS were already in the article and deleted along with a lot of the physiological basis of CFS, not on the basis of better material from more reliable sources, but on the arbitrary basis of saying the JCFS was not a WP:MEDRS. I would like to see discussion on the talk page of the material and sources that were in the article last summer that were referenced by the JCFS in order to present a more neutral article. Ward20 (talk) 03:06, 11 January 2009 (UTC)

The article only becomes biased if there is a suggestion that the mainstream believes what the JCFS supports but it is not cited here. But for that to be the case, mainstream sources must cite it (and the JCFS can be cited for more specifics). Better sources should be sought first for the statements (looking into the diffs above, I think better sources could be found). So the effort should be placed on looking for the better sources. If JCFS is citing theories about the origins of CFS, that's not enough to put in a discussion here. MEDRS interacts with WP:UNDUE which states that we should not report tiny minority positions - if JCFS is the only source for a statement, that would be a tiny minority in my mind and therefore not necessarily a good source. Do you still believe there is merit to the statements that you provided diffs for? If so, a far better way of reflecting the page and ensuring that there is unambiguous support for the ideas would be to look on pubmed and google scholar for the appropriate citations. JCFS only becomes an issue at that point if no other sources can be found. Then it would be a greater question. Seeking to have it put in the page because it is in the JCFS (rather than to indicate that an idea has medical support) is somewhat missing the point of the page and wikipedia as a whole. And in fact, for at least the second of your links, this has happened. Multiple lines of support for good evidence in highly reliable journals means the JCFS isn't the problem and reason for rejection of a piece of information. WLU (t) (c) Wikipedia's rules:^simple/_complex 03:24, 11 January 2009 (UTC)

And incidentally, discounting an independent third opinion (the reason why the RSN exists) because you don't agree with it is problematic; assuming the editor didn't actually do the review and lied about it isn't good faith. In the case of a content dispute, the protocol is to seek outside inputs and be bound by them. This outside input came down negatively and the JCFS for the most part doesn't seem crucial anyway. Spending all this time on the talk page instead of working on the main page is also frustrating. WLU (t) (c) Wikipedia's rules:^simple/_complex 03:45, 11 January 2009 (UTC)

I believe there is a misunderstanding about what I wrote. I did not say material should be in the article because it is in the JCFS, only that it shouldn't automatically be removed from the article because it was referenced by the JCFS. There is a big difference in those two positions is there not? And as I understand it, the above says some of the material that was removed because it was referenced from the JCFS may indeed be referenced elsewhere, but we shouldn't use the JCFS as a reference for the material because the JCFS is not mainstream, even though the JCFS may agree with other references? It seems as though that reasoning gives the JCSF absolutely zero credibility. There is indeed a problem with the second link you mention[21]. The reference to the article seems to be correct, but the URL incorrectly points to a pamphlet about the article. The pamphlet is not RS but the article proper is cited by 85 (mostly journals) on Google Scholar.

I didn't even say I disagreed with the third party opinion. I said there was no links or evidence provided. Period, full stop. The conjecture about "assuming" and "lied" were nothing I wrote or implied. Other editors don't accept everything I write is correct. Why must I assume everything others write is correct or I don't show good faith? One editor that gives a third party opinion is not a consensus when previously the consensus was different, and there is a Wikipedia:Reliable sources/Noticeboard discussion going on presently where there seems to be no consensus. Look, I am not trying to be difficult here, I wish not to spending all this time on the talk page also. As you have suggested, I will look for other sources to support what I consider to be important material that has been removed. But I am appealing for some cooperation not only with myself, but also the four or five other editors that have expressed concern about the NPOV of the article. Ward20 (talk) 08:17, 11 January 2009 (UTC)

Further edits removed only because of J of CFS publishing. [22], [23], [24], [25]

Please note these are mainly RCT trials by established researchers. There is generally a shortage of such quality trials of CFS treatments, and at this point in time all deserve mention, removing any has implications of bias. Rather than discriminating on the basis of journal might I suggest established researchers or if we want to reduce number of treatment trials in subarticle, we stick to gold standard DBPCT.Jagra (talk) 04:54, 15 January 2009 (UTC)

Furthermore people are selectively quoting the previous RSN about Haworth press, without the other comment from a regular editor of that noticeboard not involved in this Article."Looking at it's About Us page, it seems to be a reliable publishing house."--- Blueboar (talk) 13:38, 28 October 2008 (UTC)" being selective is not a NPOV.

Among the authors in Nightingale I find the following have published in pubmed indexed journals; Jain A 23, Bastien S 10 including CFS, Ramsay A M 51 including on ME, Dowsett B 4, Richardson J At least 17, Murdoch J At least 9 on CFS, Rubinstein H At least 10, Snow P At least 10 , Banatvala J E 2 on CFS, Acheson E D 144 listed, Henderson D A At least 10 including on CFS, Levine P H hundreds including 23 on CFS, Bell D S many including 14 on CFS, Komaroff A hundreds including 68 on CFS, Buchwald D 184 including 81 on CFS, Mowbray J F 108 including 4 on CFS, Holmes M J 2 on CFS, Hickie I Hundreds including 43 on CFS, Loblay R 34 including 3 on CFS, Lloyd A Hundreds including 49 on CFS, Gupta S Hundreds including 8 on CFS, Simpson L O 125 including 9 on CFS, Winther M D 10, Peterson M D 59, Cheney P R 12 including CFS, Suhadolnik R J 137 including 7 on CFS, Pross H At least 10, Cross J 24 including CFS, Trainin N 195, Field M D 5, Martin W J Hundreds including 13 on CFS, Terunuma H 44, Grufferman S 69 including 2 on CFS, Bendinelli M Hundreds, Archard L C 74 including 8 on CFS, Cunningham L Hundreds and 3 on CFS,

Thus a claim on this page that the authors in this book could not otherwise find publishers is clearly not a valid, objective or even balanced assessment to make and indicates off-handed and dismissive statements are being made regarding sources that do not agree with a narrow reference base of some editors and their POV. This further indicates certain edits and comments on this page and Article should thus be closely scrutinised. This analysis rather supports the editors who have said it contains important reviews, RCT trials and other papers by experts in their fields. Jagra (talk) 03:57, 14 January 2009 (UTC)

I see nothing in self published that defines the Nightingale book as such! Rather this would seem to be an interpretation by certain editors, given the facts as described in the book and the legal framework described above, I do not agree. It does contain papers by authors , whose work in the relevant field has been published by reliable third-party publications, as i demonstrate above, despite attempts to paint it otherwise. It may be dated but that does not automatically imply that it is superceeded or of no relevance. It seems past edits have also been deleted on the strength of this dubious interpretation without even considering the merit of the work cited.Jagra (talk) 05:31, 14 January 2009 (UTC).

Some of the removed edits using this reference, many of which are made in a historical context and or by authors of established expertise. [26],[27].

[28], [29], [30], [31] [32], [33], [34], [35], [36], [37],Jagra (talk) 04:54, 15 January 2009 (UTC)

Self-published means it is not published from a reliable independent publisher. Articles in a SELFPUB that get published other place can be sited from other source when it is reliable. On medical articles they should be secondery and recent to when its possible. RetroS1mone talk 13:02, 16 January 2009 (UTC)

The definition of self-published is Anyone can create a website or pay to have a book published. For this reason, it is usually not acceptable in Wikipedia to cite self-published books, ---

Nightingale was not payed for by Hyde therefore it does not meet this definition therefore it is not self-published. Even if somehow it was somehow ( and I would like to see the logic)! then For example, material may sometimes be cited which is self-published by an established expert on the topic of the article, whose work in the relevant field has previously been published by reliable third-party publications.I have established the bona-fides of many of the authors in the 14th Jan. posting. Mass deleletions of all edits (as also shown above) citing this work was inappropriate. Jagra (talk) 23:44, 20 January 2009 (UTC)

I just read this controversy, without knowing the work in question. Library of Congress catalogues it as 'conferences', from 'Cambridge Easter Symposium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome held at Cambridge University, England in April 1990.' 'Self-published' is way too dismissive of high-profile conference proceedings.Sam Weller (talk) 18:28, 22 April 2009 (UTC)

Pleased you made the connection Sam, I have taken the trouble to find a copy of this work and it indeed says as much in the Foreword, it is principally comprised of papers presented at that conferance, by many established experts on the subjects, many of which despite their date are important reviews, on aspects of CFS. I have not been able to find conferance papers elsewhere and I beleive this book was intended to act as a record of the conferance proceedings. The fact that the Library of Congress catalogues it as such confirms my beleif. It also has significance historically because it was the first international conferance under the title CFS/ME oops ME/CFS. Jagra (talk) 06:03, 5 June 2009 (UTC)

Retrovirals

Latest comment: 15 years ago16 comments6 people in discussion

As someone who hasn't visited this article in some time, I am pleased to see that it's been broken out into subdivisions and properly cited inline (which tells you how long it's been since I was last around).

However, I note some distressing tendencies.

Firstly, the article is getting rather thick on the medical-speak, and may need a 'jargon' tag or some simplification in order to be a bit more useful to the average non-MD reader.

Secondly, there's rather a bit of bias showing.

I note that while "one study" (Conceptual issues in undifferentiated somatoform disorder and chronic fatigue syndrome) gets a mention as if it's meaningful data and isn't countered at all (despite the fact that as far as I can tell, the study is exclusively talking about *psychiatric* differentiation and utterly ignoring all the physical evidence, such as the genetic and neurological differences). And yet someone up there on the talk page seems to be saying that the viral studies don't deserve a mention! I cannot believe that the extremely significant and popularized Valcyte trial is not mentioned anywhere in this article, as but one example of the many antiviral treatments being researched, such as Ampligen.

There is no mention of the controversy over either of the two major treatments mentioned, which indicates bias to me. The reliance on the Cochrane Review statement on cognitive behavioral therapy sounds distressingly like "blame the patient" in the part where it says "A treatment can only work if patients agree to it". There are plenty of CFS patients who have tried CBT in good faith and failed to receive any benefit. And the extremely large controversy around CBT proponents' efforts to divert CFS research and treatment money *away* from other therapies is something that should not go without being said.

I note that graded exercise therapy can be summed up as "Science says it works, but patients say it doesn't". This is also biased, and not entirely accurate, as there are "titled" objections to GET as well.

At the absolute very least there should be some mention of the idea that since CFS' cause is yet undetected, all these mentioned treatments are nothing but palliatives targeting the symptoms, and as such cannot expect to effect a cure.

I also note a shockingly large UK bias in the references. This distresses me, as it is the UK which is home to the largest proponents of the idea that CFS/CFIDS/ME is something which can and should be entirely treated with CBT and a little GET, and which is also home to the greatest controversies over research directions.

The 'mechanism' section is rather slender, especially when one considers that this article doesn't seem to bother at all with any mention of current research into CFS, particularly anything non-psychosocial. And oh, look, there's our bias again: Science says CBT works, but "though some individuals with CFS firmly reject any psychological involvement and believe strongly that their condition has a physical cause." Let's not mention that some *doctors and scientists and researchers* are also firmly in this camp.

For those who are about to ask me why I'm not making these changes myself, I shall point out that I am also a patient, and don't have the time and energy to fight edit and revision wars. I do, however, expect better than this of Wikipedia, and if I don't see changes I will start slapping 'bias' tags and the like around.

Feyandstrange (talk) 12:58, 5 January 2009 (UTC)

I am sorry about your sickness i wish you the best, but the article is not for patients or specialists it is for the general reader. It is also a medical article, so we use medical reliable sources. The mechanism section is slender bc nothing has been proven and no one knows a mechanism. That is what the good reviews in good journals say, it is not my opinion. CBT and GET are featured BC the reviews in good journals say they are the only interventions what have been helping patients, also not my opinion just what things in the Lancet and other medrs says. It does not work for every one, but some people do think it can cure some people. RetroS1mone talk 13:15, 5 January 2009 (UTC)

Contradicted yourself a bit there - why are patients and specialists not part of 'general readers'? And I specifically requested proper sources. Nor have I seen squat in "good journals" outside the UK, where a controversy rages about whether the *entire medical establishment* may be suffering from bias towards psychological therapies and against biomedical research.

And just because I'm a patient doesn't mean I'm not a medical specialist, by the way; I'm a former medical researcher. And I'm awfully tired of being written off as a hysterical patient when I ask for some science in my care.

Feyandstrange (talk) 06:17, 21 January 2009 (UTC)

Retro, you are ranking journals very inappropriately, almost upside down. You are applying rules simplistically and mechanically. People engaged as treating physicians and researchers do not pay much attention to your 1st class journals -- EXCEPT to comment on the articles, often blasting them, have you read all of the comments (online and in print on the CBT articles?). I'm a past member of the American Statistical Association and worked as a medical statistican --- the CBT trials are very flawed -- their results can best apply to those that have CFIDS and who are marginally capable of employment. They are randomized over a very selected sub-population (which they do not declare, but which anyone with first hand experience of the CFS population can see.

Please supply your list of experts (MDs), Text Books, and Journals specializing in CFS that you deem we should work off as a foundation. You have been negative about anything that does not fit you POV. I am asking you to be positive by providing those list. I will be shortly updating the entry with these foundational facets -- so I trust that you (or others) will not delete them because you do not agree with them. Please speak up and do a positive action of providing your list.

By the way, IMHO Simon Wessely is not a leading expert IMHO -- you have provided the evidence yourself, less than 1/4 of his articles are dealing with CFS. If anything, he is a professional writer (500+ articles indicate little research time on 'hands on time'. He is 2nd rank at best.

Also remember that the reality in medical journals is that what gets publish generally reflects the 'establishment' prestige of the person and conformity to current bias -- and not the quality of the research. I trust that you do not have a naive view of medical publication being above board....

Lassesen (talk) 15:13, 5 January 2009 (UTC)

I think the reason that there are so many UK references is simply that the UK has done more research than most other countries. A lot of government money has been put into research, treatment, management, etc. in the UK. In most other countries little or no funds have been given to research. The USA is about the same as UK for research, although they haven't done anything about treatment/management. Canada (where I live) is pretty pathetic - no research, no treatment/management. The patients are pretty much left to themselves, apart from a few well meaning doctors such as Stein and others, but how much benefit can they do on their own? --sciencewatcher (talk) 14:55, 5 January 2009 (UTC)

As for the article: there is an entire sub-article devoted to controversy, and it should cover all the bases. As for Ampligen, according to the Ampligen article, trials have been done, but it hasn't been approved. It would certainly be worth mentioning if it isn't already in the CFS articles. --sciencewatcher (talk) 14:55, 5 January 2009 (UTC)

A "lot of government money"? Utter nonsense. Funding of UK research is at rock bottom, just look at the stats, and what there is is steadfastly psychobabble carried out on chronic fatigue sufferers only, or measuring fatigue only. How many studies have the MRC funded? The PACE/FINE behavioural research farce is only costing around 2M, which over the past twenty years is actually small beer for a something supposedly on par with MND and MS (according to the prior CMO). The vast majority of the 100's of papers demonstrating striking organic abnormalities have come from the US. It may be that not enough of them are referenced due to the bias of the resident censors. 62.69.35.61 (talk) 03:04, 11 January 2009 (UTC)

Considering that the CDC was caught in an audit on major mis-allocation of fund specified by Congress explicitly for CFS research[Audit] -- it indicates a major problem in the medical industry concerning CFS. If anything, it suggests that the Lancet and BMJ will minimize CFS articles and then be very selective in what is published. Research is often paid for when there are side benefits -- for example, Simon Wessely is a consultant to the UK Army and thus the government has much to gain if GWI and CFS are handled in a way that reduces their costs; consultants write to and for their customers -- they are unemployed if they are idealists.

I would advocate that the article be broken apart into different articles each with various POV -- CBT does not belong on the main page. People work only on items that matches their POV and the only items on the main entry are items that there is complete agreement on

Lassesen (talk) 15:13, 5 January 2009 (UTC)

WP reports on the current state of controversies, and by NPOV policy includes all major views in the same article, giving emphasis to the viewpoint that seems to have scientific consensus, when there is such. This will necessarily give a bias to "establishment" views, but there is no other way to write a NPOV encyclopedia--anything else would be advocacy. What the advocates of other viewpoints are entitled to is that those viewpoints be presented fairly in the article. It is not appropriate to use this page for a discussion of what is the true etiology or the proper treatment of this condition-- Wikipedia is not suited for the purpose. If one has actual evidence, one should publish it in a reliable peer-reviewed journal; if one wishes to argue, there are blogs.

We necessarily give more weight to the major medical journals, and judge this by the extent to which they are referred to by other major sources and secondary sources--there is no other objective measure. An argument that they must be discounted as not reflecting clinical situation is not relevant here--this is a judgment we are not in an appropriate position to make. Again, if you have evidence to that effect, publish it properly. I point out your argument is usually interpreted to say that many practicing clinicians ignore the scientific evidence, and practice ignorantly and wrongly--but that's just an aside. I don't know what causes or cures this condition, and if anyone thinks they do, they need to convince others in the proper channels. DGG (talk) 19:52, 5 January 2009 (UTC)

Actually your approach done strictly is satisfactory to me. It means that since there is no treatment that is undisputed then the following sections should be removed:

Mechanism
Treatment
Prognosis
Epidemiology

There is no agreement or accepted practise in these area. To deem any one of the many POV more creditable is subjective. The CFS Research etc is very much out of the mainstream because the mainstream has a long history of being dismissive. The CDC behavior is mis-allocation of funds specified explicitly by the US Congress is the best and clearest demonstration --- this was caught by government auditors. How can you describe a mechanism without knowing a cause? The openning sentence says it all "given to a poorly understood, variably debilitating disorder or disorders of uncertain causation." If it is uncertain, how can you define treatment etc.... This is the only medical condition like this. I vote for deleting the cited sections entirely. The content is POV and effectively contradicts what there is agreement on.

Lassesen (talk) 23:52, 5 January 2009 (UTC)

Lassesen you should read WP:VOTE, it is not for voting what POV to use, WP POV is the POV of mainstream medical literature it is defined NPOV. All this stuff, misalocation funds etc that is original research. RetroS1mone talk 03:26, 6 January 2009 (UTC)

No it's not "original research": http://www.scienceonline.org/cgi/content/summary/287/5450/22

"The Centers for Disease Control and Prevention (CDC) has been attempting to recover from a self-inflicted wound: the diversion of millions of dollars budgeted for chronic fatigue syndrome (CFS) into work on other diseases."

That tells you all you need to know about the CDCs' reliability on this subject.

Maybe check your facts, or defer editing to people who know something on the subject rather than jumping in with your uncivil edits and tendentious claims 62.69.35.61 (talk) 03:40, 11 January 2009 (UTC)

Er, maybe everyone should check their facts. The above info is already in the article (controversies sub-article) and it has been there since at least November! Although I'm not sure if it's in the right section (it's in "patient support" at the moment). --sciencewatcher (talk) 16:47, 11 January 2009 (UTC)

The matter of the Journal of Chronic Fatigue Syndrome as a Reliable Source has been referred to the appropriate [authorities]. If it is deems to be reliable, then I expect a lot of deletes to be undone.... promptly

Lassesen (talk) 05:28, 6 January 2009 (UTC)

Ward20 asked DGG about JFCS, DGG says [38]

"Now, Journal of CFS is in Scopus, so

of the 54 papers published in 2000, the most cited ones were cited 24, 21, 17 times.

of the 32 papers published in 2001, the most cited ones were cited 13, 13, 13 times

For papers of CFS in the journal Neurology

of the 2 papers in 2000 on this subject, they were cited 76, 31 times

of the 2 papers in 2001 on this subject they were cited 45, 25 times

For papers on CFs in the journal Lancet

of the 8 papers in 2001 on this subject most cited ones were cited 264, 117, 116, 60 times

(no full papers in 2000

Of all the 299 papers ever in JCFS, the 3 most cited were cited 44, 37, 36 times

This line is the most striking, and is enough to show it is not widely cited in the field. That does not mean it is unreliable." -from DGG

Conclusion, JCFS is not cited much in it's own field. DGG says it does not mean it is unreliable that is right it just means its not influential, but not being on Pubmed does mean it. I am guess, the problem is that to an activist that disagrees on main-stream medical, and reads alot on the internet alternative medicine stuff, and goes to obscure primary literature, you get this skewed idea from what the mainstream is. That is great, i think it is good people inform them self, i just hope they get good medical advise, but that kind of stuff is not for WP. RetroS1mone talk 06:08, 6 January 2009 (UTC)

Simone,look at your numbers a different way -- where is all of the reseach published? Neuorology and Lancet has 12 papers versus 299 papers. "not being on Pubmed does mean it" is wild speculation --- it was on pubmed in the past and on the subscription services --- but the publisher has withdrawn all of their journals (I will not, nor should you, speculate on why, 1st item of slamming). I am not an activist, I have been a moderator for 9 years on the biggest discussion group on the internet dealing exclusively with experimental treatment [39] and that excludes activism as a moderator. Activism is banned on that group. Do your homework! I have read, reviewed, digested, etc all of the main stream and alternative thoughts in CFS over the last 9 years -- I had to as a moderator and to insure that a reasonable POV was maintained in the discussion.

Using the term activist is slamming (2nd time in your post). You assert without prsenting evidence that I "reads alot on the internet alternative medicine stuff", if you examine [[40]] you will see what I read, PUBMED. (3rd time slamming in your post). "obscure primary literature" - is likely a reference to the Journal of Chronic Fatigue Syndrome, you wish it to be obsure because it challenges you POV. I have repeatedly asked you to present you list of who the experts in the field are --- you have remained silent (some people could concluded that you deem yourself to be one by your silence), I have also asked for your list of text books (again silence).

Please make a POSITIVE contribution and not a negative one, I have asked for appropriate lists to help build a consensus and to have openness in the sources of POV. You've opted to remain silent - correction, attack.

Lassesen (talk) 15:01, 6 January 2009 (UTC)

Patient surveys

Latest comment: 15 years ago9 comments8 people in discussion

I realise that patient surveys aren't considered "evidence published in medical journals", but they should at least be mentioned as significant minority opinion, which WP:RULES (supposedly) allows. These surveys represent several thousand patients, whereas Cochrane calculated CBT efficacy averages using under 400 patients. These groups represent patients suffering from "ME" and/or "CFS" and shouldn't be treated as obsure cults whose views only exist on some message board. Reliable sources include the CMO report, the PACE trial identifier, and the NIVEL document (?) that Guido was promoting. - Tekaphor (TALK) 07:54, 7 January 2009 (UTC)

Are you referring to the hasty deletion by User: Verbal of survey info added by anon? I thought it was interesting and appropriate information, and the responsible reaction would have been to request the citation. The additional delete justification of 'surveys aren't evidence' is ridiculous. National censuses? Postmarketing surveillance? Sam Weller (talk) 08:53, 7 January 2009 (UTC) I forgot to mention that your first sentence concedes a point that is actually incorrect, Tek. A search for "patient + survey" in the BMJ alone yields too many hits to assess. Of prime interest is BMJ 2006;333:1-2 (1 July), doi:10.1136/bmj.333.7557.1 Editorial: "Can patients assess the quality of health care?" It begins: "Patient feedback surveys are increasingly seen as a key component of monitoring and improving the quality of health care.1" The fact that WP editors are trying to sweep them under the carpet when they provide inconvenient information merely shows up the amateurish and parochial nature of much WP. Sam Weller (talk) 10:35, 7 January 2009 (UTC)

Usually patient surveys aren't allowed per WP:RS. For me a patient survey wouldn't qualify because a patient is too close to the issue. We shouldn't play doctors on ourselves so adding a patient survey to me would fall into the same line of reasoning. Surveys can be adjusted just by the way it's worded to get a result that is positive for the person taking the survey. I don't believe this should be used per reliable sources, sorry. --CrohnieGal^Talk 13:40, 7 January 2009 (UTC)

Absolutely agreed for every medical conditions that have established tests --- which is everyone EXCEPT this one. All of the CBT stuff is based on asking the patient!!!! The absence of tests means that research trying to identify characteristics such as statistically significant measurable changes from normal populations (for example, mycoplasma infections, coagupathy etc is definitely valid --- and treatment that lowers these changes are 'potential treatment' -- they may be dealing with co-morbid items which in theory should impact this disorder.

However, treatment whose results is based on 'asking the patient' without establish use of lab work should be eliminated from this entry. If there is agreement, then I will add that clarification to the research as the criteria used in this article (transparency). It will mean that all of the CBT stuff will likely disappear (I will recheck the study to see if there is any lab work backing up the assertions in the articles).

Does that sound like a rational plan? It is actually a very good point that we need to apply uniformly Lassesen (talk) 14:20, 7 January 2009 (UTC)

I disagree with Lassesen about the parity between survey data and the papers on CBT - they are different things and if the CBT papers meet WP:MEDRS then that is fine. Surveys are problematic, and there was nothing hasty about removing an unnamed and unreferenced "survey" - it was entirely correct. Surveys are very hard to judge and interpret, so we should leave it to secondary or tertiary sources that meet WP:MEDRS. Surveys are very hard to do well and without bias, and very often they are simply done to get the result wanted (such as the recent "homeopathy works" survey). Without sourcing the survey data should not be included, and with sourcing it should be discussed here first. If people could stay civil and stop questioning the motives of other editors we might make some progress. Verbal chat 14:42, 7 January 2009 (UTC)

The deleted survey info comes appears to come from "A report of the CFS/ME working group" for the CMO. [41]

"4.4.2.2 Cognitive behavioural therapy. Patient reports - These suggest wide variation in both the practice of and the individual response to cognitive behavioural therapy. Although there is general acceptance that the therapy can help some patients, some comments point to difficulties with inflexibility in the therapists' views or in the treatment plans. Some patients are reluctant to receive what they perceive to be a ""psychological treatment"" for a ""physical"" disorder. A persistent concern is that cognitive behavioural therapy is viewed by some clinicians as the sole proven treatment strategy. A further observation was that services are often unavailable locally or available only after a long wait.

"In one patient-group survey, only 7% of respondents found the therapy ""helpful"", compared with 26% who believed it made them ""worse"". The remaining 67% reported ""no change"" (see also Annex 3, section 3). Harm was suggested by the report to occur if activity scheduling was too rigid, if the therapist displayed scepticism of the patient's views or experiences, or if they implied that their illness was ""all in the mind"". Patient reports indicate that patients find a holistic, practical, occupational therapy based service to be an acceptable approach. While mental health workers and therapists from other disciplines may also offer acceptable services, it has been suggested that therapists accustomed to working solely with psychiatric populations may need additional training and experience to engage and work appropriately with patients suffering from CFS/ME.

"Annex 3.3: Other patient evidence [42] The Working Group examined patient reports, surveys, and other material submitted by various organisations, institutions, and interested parties. These made a positive impact on the Working Group process of allowing us to learn of the wide variety of clinical experience. Key data have been assessed and synthesised into the report where possible. For example, a survey by Action for ME of more than 2000 individuals who were or had been severely affected by CFS/ME provided a useful indicator of treatment effectiveness in this group. Although the results cannot necessarily be generalised beyond this group, the data clearly indicate that the York review results do not reflect the full spectrum of patients' experience. We have utilised, by way of example, the results of one study, but other studies from patient groups have shown similar findings." [Table follows].

Sam Weller (talk) 20:08, 7 January 2009 (UTC)

I think it would be useful to put at least some of this info into the CBT section of the treatment sub-article. There is a lot of very insightful discussion regarding patients' perceptions about CBT, the way it is approached, etc., basically covering a lot of the discussions/arguments that we have been having on this page regarding CBT. --sciencewatcher (talk) 00:26, 8 January 2009 (UTC)

Yes subarticle would be OK, we need to be careful about how it gets presented but a UK government source is OK. RetroS1mone talk 00:34, 8 January 2009 (UTC)

Patient surveys would be appropriate for the opinions of patients, and their perceptions of different aspects of CFS and its treatment. But not as a source of what is actually effective or actually the pathophysiology or actually the (whatever). They are particularly appropriate for the history, society and culture and perhaps treatment sections (i.e. what they think of the treatments), but I would not support their use in most of the other sections (generically, I'd have to review specifics). WLU (t) (c) Wikipedia's rules:^simple/_complex 03:29, 11 January 2009 (UTC)

Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities in a Community-Based Sample

Latest comment: 15 years ago10 comments4 people in discussion

From the study. [43] Of the 213 individuals evaluated by the physician review team, 32 were diagnosed with CFS, 90 were diagnosed with MCS, and 22 were diagnosed with FM. Of the 32 individuals with CFS, 13 (40.6%) also met criteria solely for MCS, and 5 (15.6%) also met criteria solely for FM.

These patients were examined and diagnosed with the definition of CFS and MCS and the article further states, "The most recent case definition of MCS describes it as a chronic condition with reproducible symptoms involving multiple organ systems whose symptoms are produced by low levels of exposure to multiple, chemically unrelated substances and improve or resolve when the chemical agents are removed (15)." Ward20 (talk) 01:51, 9 January 2009 (UTC)

But the article also says "patients were diagnosed with MCS if they reported on the Medical Questionnaire that they had symptoms of feeling ill from a low level of exposure to two or more listed chemical agents that affected two or more organ systems. This is the most recent definition of MCS", i.e. self-reported, NOT reproducible symptoms (big difference). So it looks like they are saying two different things, but when you look at what actually happened you will see it is in fact self-reported symptoms. Also, the evidence shows that patients who think they are sensitive to chemicals are not actually, so "self-reported" is a very important piece of info here. --sciencewatcher (talk) 02:22, 9 January 2009 (UTC)

I understand where you are coming from, but CFS symptoms are self reported also, so are many cancer and heart disease symptoms for that matter. The wording "self-reported" or "believe" without appropriate context leaves an impression on the lay reader that it is "all in the head". Can we compose wording that is mutually agreeable on the talk page so we don't have to keep re-editing the article? 03:15, Ward20 (talk) 03:16, 9 January 2009 (UTC) 9 January 2009 (UTC)

This is the problem when editors try to do their own research of primary articles and it is why WP has a policy called yes i can hear you groan, MEDRS. Some primary articles are huge impact and important finding and you can make case, you should have it in article. Other ones w telephone interviews and 32 patients of CFS or are they FM or what, and is MCS a recognized condition, that is just total OR from primary sources, and what is point any way, this is an article for a general encyclopedia. Pls lets stay on secondery sources when there is dispute, is there a secondery source for this MCS to CFS connection?? For now I am taking out when you find a review source to interpret this confusing study plse add it. Thx. RetroS1mone talk 03:21, 9 January 2009 (UTC)

Yes, there is a similarity with CFS and MCS in that both are pretty vague and mostly based on symptoms. The difference is that MCS is not recognised as an illness by the AMA and most others, whereas CFS is. A better comparison would be with ME: both MCS and ME have been largely rejected by the medical community because they imply an etiology that simply doesn't exist. Also, the text that Ward20 put in said "A study in 2000 described a dignosis of reproducible symptoms" which it did not. If you're going to put this in you really need to put in "self-reported", otherwise you are implying wrongly that CFS has been linked to chemical sensitivity, which it hasn't. I also agree with Retro that this is a dubious study anyway, and its maybe better to just get rid of the entire sentence about MCS entirely. --sciencewatcher (talk) 03:35, 9 January 2009 (UTC)

SW, you say implying wrongly that CFS has been linked to chemical sensitivity, which it hasn't. Well firstly we are supposed to accept that the CFS as used in these articles is meant to cover a spectrum of conditions including ME etc. and secondly it certainly has been linked to CFS as a pubmed search on reviews threw up 11, Three at random being PMID 14720312, PMID 12194892, PMID 12000024. Now CS is also different to MCS which do you mean? I can look up pubmed for you if you like! I think you are expressing but an opinion on this and not a NPOV. Jagra (talk) 06:25, 9 January 2009 (UTC)

I think we are talking shades of grey here, but I am not sure that multiple chemical sensitivity (MCS) share many symptoms with CFS besides chemical sensitivity. There is not a cite in the article that says what those many symptoms are. Surely we must be aware that wording similar to believe, belief, or belief system is going to be a hot button here and that a WP:RS should be used if that terminology stays in. Other wording such as hypothesis, view, postulate, speculation or other neutral wording can be used in an article where there is a clear conflict between physiological and Psychological research. Ward20 (talk) 07:06, 9 January 2009 (UTC)

Well "self reported" would be more neutral. But I'm not convinced that this is a WP:MEDRS because it's a small primary study that only uses telephone interviews. --sciencewatcher (talk) 14:27, 9 January 2009 (UTC)

Am I missing something? I believe the 213 participants that the study presents data on were examined and tested,

"Physician Examination.

A physician conducted a detailed medical examination to rule out exclusionary medical conditions and to detect evidence of diffuse adenopathy, hepatosplenomegaly, synovitis, neuropathy, myopathy, cardiac or pulmonary dysfunction, or any other medical disorder. An 18-tender-point examination was used to test for FM (31). Laboratory tests administered to all participants included a chemistry screen (glucose, calcium, electrolytes, uric acid, liver function parameters, and renal function parameters), complete blood count with differential and platelet counts, T4 and thyroid-stimulating hormone, erythrocyte sedimentation rate, arthritic profile (which included rheumatoid factor and antinuclear antibody), hepatitis B surface antigen, creatine phosphokinase, a human immunodeficiency virus screen, and urinalysis." Ward20 (talk) 02:15, 10 January 2009 (UTC)

"patients were diagnosed with MCS if they reported on the Medical Questionnaire that they had symptoms of feeling ill from a low level of exposure to two or more listed chemical agents that affected two or more organ systems". So the physician didn't test them for MCS, it was self-reported symptoms on a questionnaire. --sciencewatcher (talk) 03:22, 10 January 2009 (UTC)

Caveats about CBT generalizibility

Latest comment: 15 years ago13 comments6 people in discussion

The following sources contain caveats about the generalizibility of existing CBT trials. (Apologies for reposting from "reliable sources".)

BMJ Clinical Evidence is "one of the world's most authoritative medical resources for informing treatment decisions and improving patient care." [44] The CFS Clinical guide (= headline message) says of CBT: "There is moderate evidence of benefit for CBT in CFS. The effectiveness of CBT for CFS outside of specialist settings has been questioned. The results of the multi-centre RCT [29] suggest that CBT may be effective when administered by less-experienced therapists with adequate supervision." The quality of the trial evidence of interventions was assessed using GRADE, and the CBT trials were rated "low" or "very low" quality [45]

Patient UK [46] is a reliable site (listed by www.direct.gov.uk) that gives "The same info as provided by GPs to patients during consultations." Their CBT info states "One problem is that CBT is not widely available in the UK on the NHS. If it is available in your area, it is certainly worth considering in addition to any other treatment. Also, like graded exercise, the research studies did not include those who were severely affected with CFS/ME and it is not known if it will help in this situation. Also, some people who start a course of CBT (for any condition) drop out of the course for one reason or another as CBT does not suit everybody." [47]

"A report of the CFS/ME working group" for the CMO. [48] accepted a survey (deemed representative of other similar surveys) of severely affected patients, who reported no CBT benefit (67%). (In contrast, 89% of those who tried pacing did find it helpful.)

In short, these officially-approved UK sources state that while CBT appears to show 'moderate ... benefit', this was in 'low quality' trials in patients with mild to moderate sx - who were well enough to attend secondary care or specialist clinics. The trials did not include patients with 'severe' or 'very severe' CFS, so there is at present no evidence that CBT can benefit the most severely ill. The only evidence for CBT in the severely ill comes from patient surveys that show appear to show little or no benefit.

This article and the treatment article should make clear that CBT benefit cannot at present be generalized beyond the mild to moderate CFS in which it was found. It is not possible to say it is recommended for severely affected patients. In fact, the only (low-level) evidence comes from patient surveys which found the opposite. Sam Weller (talk) 10:26, 9 January 2009 (UTC)

I was interested to find this issue was acknowledged in the July 1st 2007 version, along with appropriate caution in recommending CBT. All caution had disappeared by July 1st 2008. I lack the time and interest to track when and why the caveats were deleted. My issue is, is it intellectually and clinically acceptable to avoid mentioning that severely ill patients have not been included in CBT trials? Sam Weller (talk) 16:17, 13 January 2009 (UTC)

Caveats certainly are needed to clarify and not to mislead readers into generalisations. The question of recruitment into CFS studies/trials has long been an issue and there are RS references to this as well. I posted this recently in response to SW , which I think is more relevant here.

Answering your earlier query on recruitment; Comorbid presentation with psychiatric illnesses has been noted. Due to these fundamental issues, the impact of patient selection and the specification of the methods of outcome assessment loom large in therapeutic studies of CFS. The role of clinical methodology in the study of the therapeutics of CFS is not trivial, and may confound our understanding of pragmatic recommendations for treatment. PMID 16610962 Demitrack

Exclusions include a clear underlying organic cause, substance misuse, and psychiatric disorders such as psychotic depression. Less severe psychiatric disorders without Diagnostic and Statistical Manual (DSM)-IV-defined melancholic features or anxiety disorders or secondary depression are not exclusionary diagnoses and are found comorbid with CFS in some patients. Because high circulating cortisol is a frequent occurrence in major depression (7 ), this may clearly affect the results of these studies. It is therefore vital to assess accurately the psychiatric status of CFS patients who participate in studies. (or treatments) Thus, although the subjects studied by Wood et al. (41 ) were said to have had a diagnosis of major depression excluded by clinicians, 5 of 10 subjects had Beck Depression Inventory scores within the mild-to-moderate depression range. This could have accounted for a failure to find reduced salivary cortisol levels. The same reservations apply to the study by Altemus et al. (33 ), whose negative findings were in apparently non-depressed CFS subjects who in fact had Hamilton Depression Rating scale scores consistent with mild depression. Similarly, the finding by Demitrack et al. (17 ) of impaired ACTH responses to CRH testing is also found in depression, and many of their subjects had comorbid psychiatric disorder. PMID 12700181 Cleare.

Most studies of Chronic Fatigue Syndrome (CFS) have been based on patients recruited from primary or tertiary care settings. Patients from such settings might not be typical of patients in the general population. PMID 12627607 So experts say it is important to clearly define the status of patients particually in treatment studies and WP should also define the recruitment and criteria used particually when citing studies.Jagra (talk) 03:03, 8 January 2009 (UTC) Jagra (talk) 05:16, 15 January 2009 (UTC)

What's the most reliable source available that contains the caveats about CBT? If it's a patient association, the best that I would put in the page would be "patient associations object". Long posts with few references results in WP:TLDR and much of the analysis of where patients come from reads like WP:OR. What is the clearest statement that CBT is problematic and why, from the most reliable source? Regards "There is moderate evidence of benefit for CBT in CFS. The effectiveness of CBT for CFS outside of specialist settings has been questioned. The results of the multi-centre RCT [29] suggest that CBT may be effective when administered by less-experienced therapists with adequate supervision", the first sentence if it had a reference, might be able to be used (but I'd be much more likely to support the reference). The second sentence seems to say "CBT is effective and doesn't need A-class psychologists to do so". I can't read the full article, it's access-only. WLU (t) (c) Wikipedia's rules:^simple/_complex 16:15, 15 January 2009 (UTC)

Centre for Reviews and Dissemination. The treatment and management of chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME) in adults and children: update of CRD Report 22. CRD Report 35. York: University of York. 2007. [49] 'Severely Affected' section (p. 24): no CBT trials included. The Discussion states (p.40): "Patients with severe CFS/ME: There remains a lack of studies evaluating the effectiveness of interventions for patients severely affected by CFS/ME. The protocols for many clinical studies require patients to attend a clinic for treatment and/or assessment. These conditions may exclude people severely affected with CFS/ME from taking part. The balance between effectiveness and adverse effects of interventions may be different in more severely affected compared with less severely affected patients and methods of delivery/doses may need to be different. Research to evaluate the effectiveness of interventions for severely affected patients should be considered a priority." This WP article implies CBT may be effective for severely-affected patients by failing to mention that CBT has not been tested in that group. Sam Weller (talk) 22:28, 15 January 2009 (UTC)

If you read the treatment sub-article it already says "The place of CBT for children, young people and the severely affected is uncertain.[citation needed] There is also little research into the efficacy of CBT for severely affected patients.[no citation]" I would suggest you add your reference to this. Also I think the "children and young people" needs to be removed, because if you read earlier you'll see there is actually research into CBT in children (I think this was recent). --sciencewatcher (talk) 23:19, 15 January 2009 (UTC)

Good discussion can i just ask, please put quotes around stuff you take from medical literature Jagra it is confusing what you are writing and what you are getting from source. Thx. RetroS1mone talk 13:07, 16 January 2009 (UTC)

Agreed, quotes would be useful. Alternatively, taking the BEST source available, edit the page as you think fit and we can WP:BRD. I don't think anyone has problems with caveats, I think the problem is assuming it is all-or-none. There is verifiable evidence that CBT is effective, if there is verifiable evidence that scholars and/or experts consider it problematic, that should also be in the page. If the meat is on the main page, we can always nuance it later. WLU (t) (c) Wikipedia's rules:^simple/_complex 19:06, 16 January 2009 (UTC)

Unsurprisingly, I see that the caveats issue has basically gone nowhere and died off. If there is such resistance to them despite being from systematic reviews, good luck using other sources! As for children and the severely affected, Chambers et al 2006 states that "...very few studies have assessed the effectiveness of interventions for children and young people and for severely affected patients." and Cochrane 2008 states that "In limiting the population to those patients who were more mobile, the findings from this review may not be representative of more severely affected individuals." Also, a single "good quality" RCT for children doesn't suddenly mean the place of CBT for children is no longer uncertain, especially when some aspects of CBT seem "uncertain" in adults. - Tekaphor (TALK) 04:21, 22 January 2009 (UTC)

{{sodoit}} WLU (t) (c) Wikipedia's rules:^simple/_complex 14:16, 22 January 2009 (UTC)

No resistance, it just looks like Sam Weller never got around to actually doing it. As WLU says, go ahead. You seem to have a better idea of the issue than anyone else. Make the changes and if there are any disagreements we can discuss them. --sciencewatcher (talk) 16:24, 22 January 2009 (UTC)

Yes there is resistance; perhaps not in the above section, but [50] for example. WLU, on my talkpage you say RetroS1mone "supports sourced caveats", but there was instead repeated rejection of this in discussion and editing, regardless of their validity. If I couldn't reach "consensus" (ie convince RetroS1mone) about a single caveat that the authors (Chambers et al 2006) stated was a "fundamental problem", why would I bother with other caveats? I'd rather spend time-effort increasing my understanding, than waste it on prolonged disputes at Wikipedia. So I ended up working on a table for the findings and caveats/notes of 3 systematic reviews.[51] The trick is summarizing the most relevant ones into a sentence or two; I haven't got around to doing that yet, but when considering the likelihood of such a sentence being instantly reverted on false grounds of being "original research" etc, I'm not really in any rush to do so. I'm also unconvinced of RetroS1mone's earlier claims that caveats shouldn't be routinely added to findings and that "good medical articles" have a separate section for them. The Cochrane review does exactly what I have been expecting (caveats along-side findings), in the "Author's conclusions" section for example. - Tekaphor (TALK) 03:23, 24 January 2009 (UTC)

I agree we should be including important caveats. For example, if the author of a review puts a caveat in the conclusion then it is probably worth including it. And if some review states that some treatment hasn't been tested on children or whatever we should put that in as long as it isn't contradicted by a newer or more reliable source. And as I say above, a lot of this is already in the sub-article, it just needs tidied up. --sciencewatcher (talk) 04:43, 24 January 2009 (UTC)

Just a thought

Latest comment: 15 years ago6 comments5 people in discussion

Watching the removal and reverts going on with the edit summaries provided I find problematic. Some of the items being removed were discussed in length not too long ago and it was agreed by the major amount of editors at that time. I would kindly suggest to stop removing ref sections and bring your concerns to have it talked out on the talk page. Also I am seeing a lot of patient surveys being added. I really do not think patient surveys should be allowed unless there is a second and tietary source to go with it. I have to read up more some about this but I do know that a patient's state of mind can scew results. I mean if they are having a bad day then nothing is going to help, a good day maybe anything will help. I truely believe that too many editors here are trying for truth which is not what we are supposed to do. I will talk more later. Out of time for today, sorry. --CrohnieGal^Talk 21:04, 9 January 2009 (UTC)

I agree with Crohnie, these edits need discussion (and have mostly already been discussed recently). I'm not impressed by the removal of sourced information without discussion or justification, and what now appears to be blatant sockpuppetry. Please enter into rational discussion on this page, but taking into account WP policies and discussions that have gone before. Verbal chat 21:53, 9 January 2009 (UTC)

I also agree that the removal of information by new accounts with no edit summaries are making things difficult for everyone. In reality, we have no idea if this is done because the editor does not like the material or is using reverse phycology to polarize the discussions. Can we checkuser on these editors as we see them to see if they are socks one way or the other? Ward20 (talk) 02:25, 10 January 2009 (UTC)

"I do know that a patient's state of mind can scew results. I mean if they are having a bad day then nothing is going to help, a good day maybe anything will help." That's CBT shafted then, as frequently the only "measures" are subjective ones of "fatigue" and "distress", or incomplete ones such as snapshot walking tests which prove little. But basically, self-reported box-ticking. Small wonder the PACE trialists are not going to use actimeters. 62.69.35.61 (talk) 03:55, 11 January 2009 (UTC)

I have made a request for an uninvolved administrator to take a look here to get an outside opinion on things going on. [52] I really hope that some of the uncivil behavior stops and stops now. This page has become impossible to keep up with. Please stop the deleting and talk about things first and gain a consensus. This article is too controversial to be bold and insert or remove your preferences. --CrohnieGal^Talk 15:07, 10 January 2009 (UTC)

Much of this is my opinion, rather than being directly supported by Wikipedia policies and guidelines.

OK, I think I'm an uninvolved administrator. (If any of the participants disagree, please let me know.)

The disputes I've seen so far seem to be on the WP:RS issue (specifically WP:MEDRS), and which articles or books are self-published. (As an aside, articles by an editor of a journal in that journal should be considered self-published. Books by the founder of an organization, published by that organization, should be considered self-published unless the organization is a WP:RS per se.)

As for my biases, I lean toward general mainstream journals (Lancet, Nature) being considered more reliable than specialized journals, but the degree to which the articles in specialized journals are favorably referenced in general journals should be taken into account. (This is, again, subjective. As an example, I know of at least one paper in my specific subfield of mathematics which is frequently referenced because it's such a good example of a clear error.)

For the moment, can we agree that:

Rather than remove sourced information from a source some consider unreliable, please use dispute tags such as {{disputed-inline}} and {{verify credibility}}. (I'm not sure what the appropriate tag is for reading lists, rather than for reference tags, but there must be one somewhere.)
Major edits should be discussed; WP:BRD doesn't work well in a heated environment, and this topic seems heated. (Especially if there have been so many reverts that we can't determine the status quo.) Policy: We lean in favor of inclusion of arguably sourced information unless there's a WP:BLP issue.
The appropriate venues for deciding whether a source should be included are the reliable sources noticeboard (I'll come back with a link, later) and the appropriate task force within WP:MEDICINE. On Wikipedia, it's generally more important to be civil than to be right. Only outright scams should be removed without comment, until a consesnus is established. (I'm afraid I don't yet see a consensus here.)
Deciding whether a source is reliable, in our terms, is subjective, and should be established based on the opinions of experts in the field (whether Wikipedia editors, or not). I am not an expert in this field, but WP:MEDICINE may have some specific guidelines — I haven't yet checked.
And a minor point. The numbering in the #Reliable sources section above seems to have been broken up by interpolated comments. It's important, when trying to retain numbering, to include the appropriate prefix. For example:

:# Item 1
:# Item 2
:#: comment on Item 2
:# Item 3
:#: Comment on Item 3
:#:# Subcomment 1 on Item 3
:#:# Subcomment 2 on Item 3
:# Item 4

That's all, for the moment. — Arthur Rubin (talk) 17:13, 10 January 2009 (UTC)

Archiving

Latest comment: 15 years ago6 comments2 people in discussion

I've archived the page, it was 600+K. I've kept the reflist to the top. WLU (t) (c) Wikipedia's rules:^simple/_complex 23:05, 10 January 2009 (UTC)

I'm reading through the page and at least one section so far has degenerated into a free-for-all that is about editors rather than the page contents. I will be removing those to the archive in an effort to stifle further discussion based on persons rather than sources. If editors believe there is a relevant policy, guideline or source point that needs to be made, please re-state it in a new section without reference to specific editors. A reminder that edits should be made based on and supported by reliable sources, rather than opinion. To make such an edit requires no referral to any other editor. To contest such an edit also requires no reference to any other editor. So let's discuss sources rather than people. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:06, 11 January 2009 (UTC)

I think the Reference Section that has been relocated to the top of this page is actually designed to function at the bottom of the page after all that is where references are usually found. If anyone has not noticed yet it is blank where it is. perhaps there is someone with software skills that can rewrite for a top of page position, but if not i suggest it be relocated below. Jagra (talk) 04:27, 14 January 2009 (UTC)

The references section is at the bottom of mainspace pages, but talk pages are not bound by the manual of style or guide to layout. It has been left there deliberately to make archiving easier, and were it placed at the bottom it would have to be either manually re-located every time someone added a thread, or get lost in the middle of the page. It was more useful when there were a lot of references that were being placed in footnote tags, now that that is not being done, it's somewhat superfluous and the next time I archive the page I may get rid of it. The location doesn't matter that much since clicking on a footnote automatically moves the page view. WLU (t) (c) Wikipedia's rules:^simple/_complex 11:45, 14 January 2009 (UTC)

Thank you for archiving as the page was proving difficult to load. When paragraphs of the Articles are copied here for discussion as does occur from time to time. if they contain references formatted correctly for an article space they will not appear on the talk page as a reference, unless provision is made on the page. I agree it does get mixed up in threads from time to time that is why i suggested some software modification might be appropriate. Here is an example, The 2003 Canadian case definition for ME/CFS^[1].Alternatively we could add a Reference section at the bottom but this becomes very length over time making finding the bottom even more difficult. Jagra (talk) 00:15, 15 January 2009 (UTC)

This really isn't worth discussing, I've removed the section since it was empty anyway. With less discussion of direct sources and formatting, there's not much point. WLU (t) (c) Wikipedia's rules:^simple/_complex 03:16, 15 January 2009 (UTC)

CFS/ME text under header

Latest comment: 15 years ago10 comments7 people in discussion

Given that this condition is very commonly referred to as ME (if we're not to regard it as a distinct condition in its own right), and that ME-related searches will redirect to this site, would anyone object to a note directly under the title along the lines of 'considered synonymous with ME', 'often referred to as CFS/ME', that kind of thing. I'm posting here first as I recognise there's been a lot of controversy about this subject already. My reasoning is that people searching for ME who don't know (or don't agree that) ME and CFS are synonymous will arrive here, and may wonder what happened, and what's happened to the condition they were searching for. Bobathon (talk) 13:19, 13 January 2009 (UTC)

This is covered in Alternative names for chronic fatigue syndrome, and there has been a lot of discussion about whether the article should be called CFS/ME. It was decided to leave it as CFS because that is the most common name. However it may be worth adding a sentence about ME somewhere near the top of the lead, as ME is (I think) the second most common name. Perhaps we should add something like "It is also commonly known as myalgic encephalomyelitis or ME." --sciencewatcher (talk) 16:05, 13 January 2009 (UTC)

Sensible. Sam Weller (talk) 16:07, 13 January 2009 (UTC)

I agree. Goal (talk) 19:54, 13 January 2009 (UTC)

I agree in principle, though you may even want to mention a few of the other most common ones (CFIDS, for example) if you can do so without being excessively lengthy. --Rob (talk) 23:49, 13 January 2009 (UTC)

I'm surprised ME isn't mentioned already in the first paragraph of the lead. Ideally a reference saying ME is the second-most common name should accompany it (or ideally is used synonymously), to justify why it is so prominent. But certainly, it should appear somewhere. CFIDS, not so convinced on. I would venture a strong "no, we are not regarding ME as a distinct condition" unless somehow previous discussions missed a whole heap of convincing references. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:49, 14 January 2009 (UTC)

Okay, I've added ME but not CFIDS. It's my understanding that CFIDS is only used in the USA, and only by the CFIDS Association of America and maybe one or two others, whereas ME is used by many organisations and governments in the UK, Canada, Australia and probably other countries. Of course I could be wrong. Also, I haven't put in that it is the "second most common" as I thought that was unnecessary in the lead, but if others think we should add that wording then that's fine. --sciencewatcher (talk) 03:15, 14 January 2009 (UTC)

Well whilst on the subject, there have recently been claims on the page to validate the use of CFS as an ‘official’ name but this lacks credibility and indicates only what some users think. Against that the Working Group report to the Chief Medical Officer, the Chief Medical Officers report, The Whitehall letter of the Department of Health, and the NICE Guidelines all use the spectrum descriptor of CFS/ME. (note, references for these exist in the articles)

You can be certain that the public service will be both politically and medically correct. These are ‘official’ uses of the correct name for the spectrum of syndromes. Distinguishing the ‘spectrum’ from individual particular diagnostic names might be a useful addition early in the Article, to help avoid confusion among readers of the Article, particularly as we seem to want to describe the spectrum here. Jagra (talk) 04:19, 14 January 2009 (UTC)

I'm changing my opinion on this. CDC says

Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

[53]

A search for "myalgic encephalomyelitis" redirects here. How much of the fighting on these pages relates to ME "incorrectly used interchangeably with CFS"? Let's have a separate article, and explain here and there that it is "incorrectly used interchangeably with CFS". Sam Weller (talk) 09:29, 26 May 2009 (UTC)

Sam, this is from 4-5 months ago, and is best taken up as a new header on the talk page since most editors have moved on (a pretty good practice in general - commenting on month-old topics is usually fruitless). May I suggest a united discussion here? Please, anyone interested in discussing this, do so on talk:Controversies so there are not a series of splintered discussions. I'm writing up a response right now. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:13, 26 May 2009 (UTC)

External Links

Latest comment: 15 years ago2 comments2 people in discussion

I appreciate being corrected re the Yahoo link. I wasn't aware of the ODP or the fact that it led onto related sites, which was why I added it – I should have checked. However, as a user of the page, I wouldn't know what "at the Open Directory Project" was –- even if it does have 'directory' in the name –- it's an unfamiliar thing, and contextless, and therefore just one of a thousand links that I wouldn't visit. Whereas with a little text next to it (as per my last edit), I'd recognise it immediately as what it is: a list of CFS-related sites. It would serve its purpose all the better, and be clearer. I don't want to get into reverting people's reverts, so I'll leave it to someone else if you think it's worth adding. - Bobathon (talk) 17:58, 15 January 2009 (UTC)

Since the template contains a wikilink to the Open Directory Project, I don't think it's necessary to qualify. The use of the ODP is quite standard across medical pages as a substitute for direct links to support groups. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:18, 15 January 2009 (UTC)

CFS and Cures

Latest comment: 15 years ago15 comments6 people in discussion

I can find no evidence that the word "cure" is used in Prins viz this line in the Article, In a review in The Lancet, Dutch researchers state that while CBT is not necessarily a cure for CFS, The wording suggests CBT might be a cure! However i can find no paper that suggests a cure for CFS. A pubmed search brings up 27 papers with that word but without exception say no cause, NO CURE such as in PMID 11974371, PMID 17397525, PMID 15016577, PMID 9448682, etc I suggest someone provide the researchers statement from the paper or alter the text. Jagra (talk) 00:43, 22 January 2009 (UTC)

The only thing I really see about cure in the Prins review is essentially that a "cure" should be the goal of CBT due to the potential benefits of aiming high. - Tekaphor (TALK) 04:30, 22 January 2009 (UTC)

“

Most CBT studies strive for rehabilitation of patients with CFS. Our study had cure of CFS as its explicit goal of therapy.119 Cure has been defined as disappearance of symptoms and functional impairment, ability to return to work and to undertake other activities, no longer interpreting everyday bodily signs as indicating CFS, and letting go of the label “CFS patient”.125 As in other chronic diseases, the meaning of cure varies tremendously among patients. At the beginning of CBT, recovery seems vague and unattainable for most patients. Therapists should broaden the patient’s vision to a future life as a healthy person. A personal goal can never be achieved if it is not aimed for. By striving for rehabilitation only, therapists might deprive patients with CFS of a potential cure.

”

Adjusted. Prins et al. acknolwedge that "cure" is both loaded, ill-defined and disagreed upon. With CFS, when the etiology is not well understood and the diagnosis being one of exclusion and nonspecifics, "cure" isn't as simple as the removal of an infectious bacteria or destruction of a tumour. Within their definition of "cure", they seem to do reasonably well. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:15, 22 January 2009 (UTC)

Prins' statements are themselves loaded and disagreed upon, and represents a very vocal but minority view of CFS. There is NO evidence that CFS consists of "interpreting everyday bodily signs as indicating CFS,", which would mean by definition that it had no discrete existance and should properly be a subtype of somatisation, conversion or hysteria, which it is plainly not according to the evidence and consensus which Prins rejects, making hers an unreliable opinion. Yet this is Prins' agenda. Prins is not above using her own maverick interpretation of the CDC criteria (in papers which purport to use it but actually discard "invonvenient" non-fatigue criteria) and it's scandalous that such dissembling can still get published.

Some people editing recently seem very POV-pushing Prins' view as exemplary, even to the extent of using a Prins reference for things that could be better referenced, such as the Canadian definition.62.69.35.44 (talk) 16:23, 22 January 2009 (UTC)

CBT/GET does indeed often strive for rehab but its never been able to prove it. Because of this, the CBT school has had to resort to a disengenous redefining of "recovery", to mean "not exactly recovered". NICE disagrees and dissembles: "The GDG did not regard CBT or other behavioural treatments as curative or directed at the underlying disease process. Rather, such treatments can help some patients cope with the condition and consequently experience an improved quality of life"(6.3.7) This paper[54] says "The percentage of recovered patients depended on the criteria used for recovery. Using the most comprehensive [broad?] definition of recovery, 23% of the patients fully recovered. Fewer patients with a co-morbid medical condition [ie. problems other than 'fatigue'?] recovered." —Preceding unsigned comment added by 62.69.35.44 (talk) 16:32, 22 January 2009 (UTC)

"Better" is subjective and the CDC criteria is sourced as the most frequently used. I believe the Carruthers publication of the Canadian criteria gets relatively few citations via google scholar. Without a source for this opinion, it's of little use for improving the page (not to mention a possible WP:BLP violation against Prins). Prins is in The Lancet. That wins out over pretty much any opinion of an editor. If criticisms arise that are published in comparable venues, they can be added. The statement "CBT/GET does indeed often strive for rehab but its never been able to prove it" is more than a little contradicted by the Cochrane database reviews. Given the complete lack of understanding of the underlying pathophysiology and cause of CFS, Prins definition seems very reasonable. Koop pretty much supports that idea - depending on the definition used, recovery is possible. WLU (t) (c) Wikipedia's rules:^simple/_complex 16:54, 22 January 2009 (UTC)

It seems to me that the wording in the Article state that while CBT is not necessarily a cure for CFS, is pretty much any opinion of an editor as no such statement is seen to exist. The word cure needs to be understood as a reader might understand it. If Prins has some other definition, then a caveat should be inserted to explain this, at the very least the word cure should be in inverted commas to show it is not a dictionary or common usage. My dictionary says of Recovery “a return to a previous state” whilst a Cure “is a return to health”. Further the connotation commonly associated with a cure is one of permanent change. For instance one can recover from a heart attack or stroke, but would not be considered by the average person (or reader) to be cured. CFS can be either sudden or gradual, which types were included in the treatment group? For a return to a previouis state for some does not necessarily mean to “full health”. So were the patients ‘post-viral’ or have comorbid or pre-existing psychiatric conditions? For instance if a patient lost one criteria symptom they would no longer meet the ‘CDC’ criteria for CFS (which criteria?) and would be classified, despite having many symptoms still as ‘recovered’ but hardly cured, as commonly understood. It seems to me that Prins is talking about some heavily qualified 'recovery'. Lancet are correct in publishing the work but only with the caveats (and definitions) spelt out and so Wiki must also spell them out to be NPOV. Jagra (talk) 23:19, 22 January 2009 (UTC)

It seems to me that Jagra's definition is the same as used by Prins, i.e. permanent recovery from CFS to full health. And I'm not sure what post-viral or comorbid psychiatric conditions have got to do with it. --sciencewatcher (talk) 23:44, 22 January 2009 (UTC)

A full recovery from a post-viral onset would imply return to health, but a return to a pre-existing psychiatric condition could not. The word "cure" as now altered in the text, in relation to this study is a satisfactory caveat recognising a different definition applies. Jagra (talk) 00:12, 23 January 2009 (UTC)

Firstly, it is bizarre that you would mention this, because Prins doesn't say anything about pre-existing psychiatric conditions (AFAIK). Also, the definition of "cure" is to cure an illness, so if you recovered from CFS but still had a pre-existing condition, you would still be "cured" of CFS. That is the common understanding of the word "cure", and is how Prins uses it, so no changes are necessary. --sciencewatcher (talk) 01:02, 23 January 2009 (UTC)

Prins definition is essentially no more symptoms and patients not self-defining. What else is there? The latter part of the definition seems particularly, I don't know, good, given the objections made by patients about this. If the current wording is now adequate, why are we discussing? WLU (t) (c) Wikipedia's rules:^simple/_complex 02:00, 23 January 2009 (UTC)

<---Out. While I appreciate the amount of effort WLU did to try to address the issue, The following material in the article is still problematic:

“

that their goal with their own CBT treatments were to cure CFS (acknowledging the complexity of the term in relation to a condition without specific diagnostic tests, they used a definition that essentially involved a return to normal functioning and individuals self-defining as "no longer a CFS patient"). Though unable to cure, by their definition, all patients",

”

The goal of Prins' study (which was not met) is not really relevant to the Chronic fatigue syndrome article, nor is their definition of a cure relevant since it was only a goal, was not achieved, and is not used by other researchers. The other problem is that when Prins talks of the goal of the study they reference the study Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. PMID 11265953. For patient selection that study states:

"All patients with a major complaint of fatigue referred to the outpatient clinic of the departments of internal medicine of the University Medical Centre Nijmegen and the University Hospital Maastricht between October, 1996, and December, 1998, were assessed by means of detailed history, physical examination, and computer assessment of questionnaires. Patients were eligible for the study if they met the US Centers for Disease Control and Prevention criteria for CFS,1 with the exception of the criterion requiring four of eight additional symptoms to be present."

So the selection criteria for the study was fatigue not chronic fatigue syndrome. Yet it is stated they self defined as "no longer a CFS patient" which is not accurate since the patients did not not have to meet the criteria for chronic fatigue syndrome. I could not find "no longer a CFS patient" in the cited study by the way. I did find the words "letting go of the label CFS patient" in the cited study which referred a letter by Prins in the Lancet PMID 12020563.

In short,

“

that their goal with their own CBT treatments were to cure CFS (acknowledging the complexity of the term in relation to a condition without specific diagnostic tests, they used a definition that essentially involved a return to normal functioning and individuals self-defining as "no longer a CFS patient"). Though unable to cure, by their definition, all patients",

”

has no basis for being in the WP Chronic fatigue syndrome article. The material is tangential at best and misleading at worst. Ward20 (talk) 04:37, 23 January 2009 (UTC)

The material is sourced to the Lancet and that's enough for me. The whole purpose of peer review is to grant the published article the imprimatur of the whole journal. Without retraction or external criticism, it is verifiably published in the Lancet which is a highly respected publication that I give far more weight to than I do any other editor's opinion. Want criticisms on the page of that section? Source it but stop criticizing it. As every single review has said, everything about CFS is controversial. So, source the controversy, source the criticism, source opposition, but please stop endlessly debating things on the talk page. Or get a request for comment. Or seek input from WP:MED. As a secondary review in a highly respected journal, it is among the best types of sources from which to write the page. You want me to change my mind or support a qualification of the section? Then find a source and e-mail it to me. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:21, 23 January 2009 (UTC)

Not using CFS criteria for a claim about CFS is rather problematic, although perhaps not for those who assume ME/CFS whatever and "chronic fatigue" are essentially the same. Anyway, some of Ward20's criticism doesn't need "sourcing". The current text "Though unable to cure, by their definition, all patients..." etc implies that cure was almost routine but just didn't happen to all patients; however, the cited review (Prins' et al) doesn't discuss the results of "their" study, yet alone mention the cure rate or demonstrate that aiming for cure is better than aiming for rehab. The primary source itself PMID 11265953 states that "Among the CBT group, clinically significant improvement was seen in fatigue severity for 20 of 58 (35%), in Karnofsky performance status for 28 of 57 (49%), and self-rated improvement for 29 of 58 (50%)." Without access to the full-text I can't rule out that the primary source itself discusses the cure rate, but the secondary source (Prins et al) certainly doesn't. It does however state that "most studies strive for rehabilitation of patients with CFS", which is an indicator of how CBT is usually intended. - Tekaphor (TALK) 09:00, 25 January 2009 (UTC)

Update: I found a URL to the full-text of the CBT trial in question. [55] It states that "Self-rated improvement was defined as a patient’s indication that he or she was completely recovered or felt much better." Apparently this applied to 50% of the chronic fatigue participants, yet only 35% had clinically significant improvement in fatigue severity? - Tekaphor (TALK) 03:19, 26 January 2009 (UTC)

Streamlining the Treatment Section

Latest comment: 15 years ago30 comments6 people in discussion

I am a Wikipedia user and occasional contributor and I recently reread the current version of this article. I am appalled at the lack of NPOV in this Treatment section. In contrast, I have found the debate on this talk page balanced if somewhat impassioned. There is no point in my reprising the whole CBT and GET treatment vs. management argument and its efficacy as this has been well articulated above. As I support the practice of limiting material contributions to article content to expert contributors, I don't want to touch the main article, but I do want to make some simple points here:

The average reader won't read this discussion. They will stick to the main article.
I last read this article 12 months ago and I agree with Feyandstrange et al that breaking up it up into a hierarchy of sub-articles makes the whole more digestible.
However, 12 months ago, the Treatment section presented a more convolved but more balance balance debate. It was also flagged as disputed.
We have now précised this down to a more extreme POV and at the same time lost the POV flag. On a simple word count basis some 80% of this section talks about CBT and GET with the remaining 20% discussing other treatments and overall context. All references to the disputes over their efficacy have been removed.
It now begins with the unqualified statement that "only CBT and GET have a scientifically proven beneficial effect" [my italics].
Surely to balance this section:
- The claim that "only CBT …" should be removed. It's opinion, not provable fact, and if this discussion belongs anywhere it is in the sub-article.
- The CBT paras should be trimmed to a 5 line summary. For example we don't need a whole paragraph on claims of efficacy based on a contentious review⁽⁺⁾. These again belong in the sub-article.
- Picking up an earlier reference text, we could have similar, say 3-4 line, summaries on anti-viral treatment, stress and immune system, mitochondrial treatment, other medical interventions (or whatever — you are the experts).

So please can someone summarise the discussions on this page and put them in the article.

(+) I have read this Cochrane review in detail as well as some critiques. This 'meta-analysis' is based on a biased selection of 14 studies which largely compared CBT to alternatives such as "do nothing" and other psychological base treatments (one study had clinical had clinical interventions but these were excluded); also many explicitly excluded CFS suffers who were too ill to attend clinic sessions, and no comparisons to medical treatments for CFS were made. So yes, based on this sample, CBT offers a small statistically significant improvement in the treatment of mild CFS sufferers. However note that the analysis only included studies which demonstrated a positive CBT result, so it would be difficult to fail to obtain any other conclusion. TerryE (talk) 03:43, 23 January 2009 (UTC)

"Only" does not need to be removed since it is a direct quote from a recent source - unless newer sources appear that have found other treatments are also proven, then it is verifiable that "only cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have a scientifically proven beneficial effect". It is indeed an opinion, but the opinion of appropriately informed expert scholars publishing in an appropriately peer-reviewed, pubmed-indexed source. This is not our opinion or one editor's opinion, this is the opinion of someone who should know. If you are aware of reliable sources that discuss other cures, please add them to the page or bring them up here. Methodological issues with the Cochrane review is the issue of Cochrane to deal with and qualify. Cochrane's qualifications are discussed and includes again a direct quote of "the evidence base at follow-up is limited to a small group of studies with inconsistent findings". I don't know why people thinks there's a better, magical treatment that cures CFS that we just aren't reporting, apparently out of spite - based on the best information I have seen, the best treatment for CFS is CBT. This does not mean it is perfect, and the page reflects this. The problems with the other "treatments" you site is, as the sub-heading in CFS treatment says, those are proposed, not proven. The Matrix violates the second law of thermodynamics. I know this is a flaw in the movie. But I am not allowed to add this to the wikipedia page. Similarly, people know there are flaws with the recent research, but it is the best we have right now. If and when other sources arise, if it turns out that fresh squeezed orange juice is demonstrated to be effective and The Lancet, Jama and Acta neurologica Scandinavica all report it as a cure, then it can be added. Until then, it must be verified that the currently reported treatments are not actually effective before being removed, or are effective before being added. The whole point of relying on sources and having a hierarchy of quality and usefulness is to allow the sources to address WP:NPOV, rather than relying on the bickering of editors on talk pages. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:40, 23 January 2009 (UTC)

WLU, I have now read though all 10 pages of discussion on this article and I admit that you've probably taken on a 'poison chalice' in leading on the governance of the article, so you have my sympathy :-)

I accept your point on "Only…" since the Wiki rule is 'verifiability, not truth'.
I agree that my comments on the Cochrane review are irrelevant to this discussion, and as you correctly point out a placeholder caveat already exists in the body.
However, you haven’t addressed my points about balance and placement: ~80% of this section covers CBT/GET, yet only 45% of the sub-article. All other topics are in summary form, but there is detailed material on CBT that belongs in the sub-article. There is no clear logic for this particular detail to be retained in the main body.
Moreover WP:NPOV also calls for "representing fairly, and as far as possible without bias, all significant views that have been published by reliable sources." [My italics] In this respect the article does fail to achieve these NPOV standards. Clearly statements of medical fact should be supported by the evidence of appropriate peer reviewed journals. However, as is demonstrated in the sometimes heated debate and references provided within the talk pages, this medical conclusion is also disputed by many patient groups and some professionals. An unbiased article would state this. Yet, over this last year all comments on this effect (in regard of CBT) have been removed from both this and the child article. This censorship constitutes bias. Statements to the effect that many medical professionals and patients groups contest the efficacy of CBT can be supported by statements in literature, evidence of Judicial Review and publicly released video presentations, and in this context thse constitute reliable sources. Surely we can discuss and introduce some fair wording that reflects this?

TerryE (talk) —Preceding undated comment was added at 22:00, 23 January 2009 (UTC).

I've said before we need to trim the CBT section in the main article and put most of the info into the treatment sub-article. If you want to do this, go ahead. If nobody else wants to do this I'll do it myself, but not right now. It should just be a few paragraphs, with the main info in the sub-article.

However we still should have more info on CBT/GET than any other treatment, because they are the only treatments which have been shown to be beneficial. No point arguing about criteria, etc. - the bottom line is that all the major reviews state that CBT/GET are the only/best treatments that work, although they don't work for all patients, so that is what the article should reflect. Lots of patients don't like CBT/GET, and the article says that, but it is no reason for not including them. --sciencewatcher (talk) 22:09, 23 January 2009 (UTC)

I didn't say that CBT/GET should be excluded, but rather that a balance presentation should be given. However your statement that "All the major reviews state that CBT/GET are the only/best treatments that work" is a POV that I and others don't share. For example, the two Treatment sections of the cited eMedicine summaries (med3392 and ped2799) only contain a single sentence on CBT/GET "A rehabilitative program of gentle exercise has proved helpful, as has cognitive therapy." Dr Anthony Komaroff of the Harvard Medical School at a keynote speech at the CDC's CFS 2006 Awareness Campaign made the statement "The bad news is that we don't know what causes it [CFS] or how to treat it successfully, but the good news is that there are over 4,000 published studies that show underlying biological abnormalities with this illness. It's not an illness that people can simply imagine that they have, and it's not a psychological illness. In my view that debate, which has raged for twenty years, should now be over."

The issue seems to be that there are two camps in this somewhat controversial area: those (largely psychiastrists) who treat CFS as largely a psychophysiological illness and those that treat its as syndrome due to biological causes with biological treatments. It is only the former group that treat CFS as unified syndrome and publish works on "CFS treatments" per se; the latter see CFS as a secondary manifestation of biological causes and publish papers on the treatment of EBV, mitochondrial dysfunction, etc.. I suspect that none of us want to repeat this debate (yet again) in this talk page or in the body of the article. What I am seeking for true NPOV is we should find some fair statement that this debate is ongoing, and the efficacy of CBT/GET remains controversial with some medical and patent groups. — TerryE (talk) 14:32, 24 January 2009 (UTC)

Sorry, it's not my (or anyone else's) POV that CBT and GET are the only treatments that work. In fact my own POV is that they aren't very good treatments. But all the reviews state that CBT/GET are the only effective treatments, so that is what we put in the article. End of story. --sciencewatcher (talk) 17:13, 24 January 2009 (UTC)

The reviews don't say that no other treatment/intervention has ever been found beneficial in any RCT whatsoever. CBT/GET are just the only ones that have received enough funding for there to be more than a few RCT's to draw overall conclusions from (although some others seem ineffective anyway); perhaps this should be mentioned in the article, and I think some of the relevant reviews specifically mention this. As others have noted, the CBT section has become bloated, with a lack of caveats and significant minority opinions despite the bloat. WP:RULES allow inclusion of (weighted) uncertainty, controversy and significant minority opinions; yet these are generally relegated or excluded. It's not like people posting above are expecting pages of text about these, but just a few concise sentences, is that really too much to ask or expect? Over the last few weeks or so I have compiled a table using 3 systematic reviews relevant to CBT/GET to aid the process.[56] Some of these quotes are fundamentally important, and therefore should be mentioned along side the reported "positive" findings. _Tekaphor (TALK) 09:40, 25 January 2009 (UTC)

Does anyone have PMID 11809249 electronically? I'd like a copy.

Wording is now "most evidence to support". This eliminates "most effective/best/treatment of choice" and all other wording that could possibly be interpreted as promoting it, justly or unjustly. CBT and GET should have more space in the body text because they are actually tested and proven. As the lead of Chronic fatigue syndrome treatment states, "Beyond two management techniques, no treatments have been accepted as effective." That is why CBT and GET have more text than the rest, because the rest is basically a bunch of theories (or the results haven't been published yet, or results demonstrating effectiveness haven't been found and put on the page yet). At best they should get one mention apiece. If anyone knows of any other treatments that have been found effective, please post it here or add to the main page. Without such evidence or citations, there is absolutely no justification to add extra information on the other treatments on the main page, and the proportions don't really matter. Also, the current section is a fair bit shorter, with less detail than the last time I edited it. I'm fine with the current version. Tek, I'll try to make time to review your table. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:12, 26 January 2009 (UTC)

Based on Tek's table, I've reworded the section. It now contains caveats that the results are not perfect, objections by patient groups, and emphasis that this is the best evidence-based treatment rather than a cure. Extra details and specific caveats should be in the sub-article. WLU (t) (c) Wikipedia's rules:^simple/_complex 22:41, 26 January 2009 (UTC)

Oh no it doesn't. A single editor has unilaterally and peremptorily removed the caveats (raised in systematic reviews by e.g. Bagnall et al), and other statements arrived at after discussion here. I can't revert easily to the last agreed version, because of subsequent maintenance by AnomieBot. Sam Weller (talk) 14:39, 27 January 2009 (UTC)

The problem is that "several flaws and potential issues with the findings" doesn't really fairly represent the conclusions of the reviews and gives undue weight to them, and patient surveys shouldn't contradict the results of RCTs which show no adverse effects. I have put the main caveats in the treatment article, but we shouldn't be including every possible gripe. CBT and GET have been shown to be effective and there is strong evidence for CBT. There are caveats, but minor compared to the strength of the evidence, and the main ones are in the treatment article. If you want to include them in the main article I would suggest adding one sentence with some specific details, e.g. uncertainty about CBT in severely affected. --sciencewatcher (talk) 16:53, 27 January 2009 (UTC)

Sam, what do you think is missing? Do you mean Chambers, Bagnall, Hempel & Forbes 2006 PMID 17021301? What caveats do they mention, and could you forward me a copy? What would you consider the last agreed version? WLU (t) (c) Wikipedia's rules:^simple/_complex 23:36, 27 January 2009 (UTC)

If anyone needs a copy of the full text of PMID 17021301, there is a link to it at the bottom of Tekaphor's talk page. --sciencewatcher (talk) 00:08, 28 January 2009 (UTC)

(outdent) So no mention that these RCTs were "low" or "very low" quality (using the objective BMJ Clinical Evidence rating tool [57]). Compared to the double-blind placebo-controlled 'gold standard', CBT trials are brass. And no mention that the trial patients were well enough to attend clinics (Chambers et al), so it's hardly surprising that surveys of homebound or bedridden patients found contradictory evidence. Sam Weller (talk) 11:43, 28 January 2009 (UTC)

Your second point is covered in the treatment article, and it should probably go into the main article. Where does it talk about "brass"? I see no mention of low quality in any of the abstracts or even the full-text from the reviews we are using. What it does say is that the quality varies, but there are high quality trials of CBT. While I'm all for double-blind placebo-controlled trials, this obviously doesn't make sense for a behavioural treatment (which you could argue is totally placebo). --sciencewatcher (talk) 16:18, 28 January 2009 (UTC)

Sorry, thought I gave the BMJ CFS review table above, but here it is, including most if not all of the CBT trials in other reviews used here [58] The CBT trials appear at the top of the table. They are rated as "low" or "very low" quality. Since there is a fairly consistent diminution in the effects of any treatment when study quality is improved, we can assume that the "moderate" benefits of CBT will likely disappear in gold standard trials, if such are ever undertaken. Brass was my analogy - cheap metal that might be mistaken for gold by the untutored or credulous eye. Sam Weller (talk) 21:27, 28 January 2009 (UTC)

I don't have access to that page. Can you quote the relevant section here? And what date was it published? This doesn't seem to agree with the major reviews which we have in the text. --sciencewatcher (talk) 22:31, 28 January 2009 (UTC)

I have also just exhausted my 1 hour free access to BMJ Clin Evid. But not before saving the table, the CBT/GET rows and refs of which can be seen here [59] The general Methods pages are the same for all their reviews, and free online.[60] Interestingly, they exclude trials with >20% drop outs.[61] Appraisal is made with a set of quality parameters which take no hostages. [62] Hence the poor ratings for CBT, which are not after all related to lack of blinding, since any RCT gets a 4. Sam Weller (talk) 12:07, 29 January 2009 (UTC)

That is good OR Sam theres no perfect science study every paper has alot from disclaimer in it and every paper there is a critic that says hey this is not a great paper, science works so. Facts are, no treatment proves yet effective just CBT and GET, no treatment has near so many RCTs, alot reviews in improtant journals like Lancet say CBT and GET is now best treatment or only effective treatment. Not many things in science so unanimouse like this, may be that is bad it is not for me and you judging from a table we analyze ourself. RetroS1mone talk 13:04, 29 January 2009 (UTC)

[outdent] OR?? The scores and comments in the table belong to the BMJ systematic review, not me. Sam Weller (talk) 14:46, 29 January 2009 (UTC)

Yes OR you are going through every thing possible to find some thing to cast doubt at many, many RCTs and the conclusions from many, many reviews bc you do not like the conclusions, it is called cherry picking i think?? RetroS1mone talk 15:01, 29 January 2009 (UTC)

PMID 15585538 has a high quality rating according to Chambers. I see the reference for it in your table, but you seem to have neglected to include it as far as I can tell. If you look at Chambers you'll see that all the other CBT/GET studies have a rating of below 10 out of 20, which I assume means they are either low or medium quality. However we can't just say in the article that the quality is low/medium unless that is actually stated in the conclusions or discussion of one of the major reviews. Us looking through the table and drawing our own conclusions would be WP:OR as Retro says. If you need the full-text of any of these reviews, let me know. --sciencewatcher (talk) 15:52, 29 January 2009 (UTC)

SW: There is no OR here. The CBT/GET rows of the table are copied and pasted from BMJ, with no alteration. PMID 15585538 is ref 30 here, and grouped in row 3 with the other two trials that specified fatigue as the primary outcome (refs 25 and 29). You might wish to compare the Chambers criteria with GRADE. I make no apologies for citing a high-level review in the BMJ (since the new talk section on CBT generalizibility on 9 Jan).

I'm not disagreeing with you about the quality, I'm just saying you can't summarise that table yourself. You need to find a comment in a review that explicitly says something about the overall quality. --sciencewatcher (talk) 17:24, 29 January 2009 (UTC)

RS: 'Cherrypicking' refers to selective reporting of favourable results - such as an effect size of 70% found in one trial in a metaanalysis with a mean of 40%. The BMJ reviewers were prevented from cherrypicking by the predefined GRADE quality criteria. Your idea that 9 low quality RCTs are incontrovertible seems oddly unrelated to the real world of clinical evaluation. Sam Weller (talk) 17:19, 29 January 2009 (UTC)

It's misleading to imply that CBT for CFS is a rare example of unanimous scientific consensus. Sam Weller's table is in line with the Cochrane 2008 statement that: "Whilst the evidence base for CBT as a stand-alone treatment for CFS continues to expand, there is a surprising lack of high quality evidence on the effectiveness of CBT alone or in combination with other treatments to inform the development of clinical management programmes for people with CFS." As for the BMJ review in question, even if a direct quote about the overall poor quality of CBT studies was found, I doubt it would be "allowed" anyway. Thanks WLU for attempting a sentence about sourced caveats, even though it was reverted. Looking for examples of caveats in other Wikipedia articles, in the main major depressive disorder article (a featured article) I see caveats in the "Treatment" section, there is even a "Criticism" subsection (about antidepressants). The authors of systematic reviews have highlighted important issues about CBT research for CFS, so why are they still resisted? - Tekaphor (TALK) 03:25, 30 January 2009 (UTC)

The consensus is, CBT GET is the only proven effective treatment for some people. There is nothing else with proof now. Do you know about another medical problem in there is so many RCTs for one treatment and so many other things that got tried without good results, and so many reviews that say this thing is the only effective therapy bc i do not. The consensus is not, CBT works on every one and CBT is 100% and CBT always causes cures, the article does not say it. The article all ready says it does not work on every person, it says it does not cure people exept in some studies. People wanted the CBT part cut down for size, it said more before like predicting out-come and other things but people did not want that. RetroS1mone talk 03:37, 30 January 2009 (UTC)

[unindent] We can and should be including all the major caveats. The problem is, what to include? I have made sure I included all of what appear to be the "major" ones, i.e. the ones listed in the main conclusions/discussion of the reviews. I don't have access to the full-text of the Cochrane review, but in the abstract there is no mention of quality issues (nor is there in the abstracts of the other reviews). That doesn't mean we can't include a comment from the full-text of a reliable review, and I probably wouldn't object to putting in this quote from Cochrane. The problem is that it doesn't actually address the question we're trying to answer: what is the quality of the CBT trials? Saying there is a "lack of high quality evidence" is not the same thing as saying that the evidence is low quality. Surely there must be some authoritative comment somewhere that we can use. Does the BMJ clinical evidence article not have some sort of summary? Looking at a number of reviews, I see a lot of them say that "methodological differences" between trials are a problem in comparing them (and we already mention this), but none of them say that the quality is low, apart from the table in the BMJ clinical evidence. --sciencewatcher (talk) 04:43, 30 January 2009 (UTC)

Looks like the 1 hour limit at the BMJ is per day, so here's the CBT Summary (copied and pasted as is):

Overall improvement: Compared with control interventions CBT may be more effective at increasing complete recovery at 5 years ( low-quality evidence).
Quality of life: Compared with control interventions We don't know whether CBT is more effective than usual care at improving quality of life ( very low-quality evidence).
Fatigue: Compared with control interventions CBT may be more effective at improving fatigue (very low-quality evidence).
Physical functioning: Compared with control interventions We dont know whether CBT is more effective at improving physical functioning (very low-quality evidence). [63]

GRADE doesn't leave much wriggle room, does it? Sam Weller (talk) 18:06, 30 January 2009 (UTC)

Looking at the Cochrane review there are 2 comments about quality: "The body of evidence for the effectiveness of CBT for CFS has grown considerably in quantity and methodological quality over the past eight years." and "Whilst the evidence base for CBT as a stand-alone treatment for CFS continues to expand, there is a surprising lack of high quality evidence on the effectiveness of CBT alone or in combination with other treatments to inform the development of clinical management programmes for people with CFS". --sciencewatcher (talk) 21:17, 30 January 2009 (UTC)

I posted my response in the "Change to CBT: effectiveness, etc" section, since the conversation seems to have transfered to there. - Tekaphor (TALK) 09:50, 2 February 2009 (UTC)

CBT "most effective treatment"

Latest comment: 15 years ago6 comments3 people in discussion

I changed the wording to match the reference, i.e. "moderately effective", but Retro changed it back. I have read through the entire full-text of this reference, and nowhere does it say that CBT is the "most effective" treatment. If anything it says the opposite: it says a number of times that all "bona fide" treatments seem to have the same effectiveness (although it seems to be talking about psychological treatments).

Reading through the various reviews it appears that CBT is the most effective treatment. However if you want to put that wording into the article you need to have a reference for it, and I haven't found one even by typing those words into google and google scholar. --sciencewatcher (talk) 17:18, 24 January 2009 (UTC)

The references say CBT and GET are the only effective treatments. GET is kindof related on CBT. CBT has alot of rcts behind it. No other treatments have been scientifically proved yet. That is what the sources say. RetroS1mone talk 19:21, 24 January 2009 (UTC)

Adding to reviews in the article here is a source says it explicit, Godfrey E et al British Journal of Clinical Psychology, Volume 46, Number 3, September 2007. RetroS1mone talk 19:26, 24 January 2009 (UTC)

Yes, I'm aware of what the reviews say. But that isn't what you put in the article. You put in "CBT, a form of psychological therapy, is currently the most effective treatment for CFS". Saying that CBT is "the most effective" is not the same as "CBT and GET are the only effective". And we already say above that CBT/GET are the only effective treatments. --sciencewatcher (talk) 20:45, 24 January 2009 (UTC)

Regarding the Godfrey article: I don't see that in the abstract, and I don't have access to the full-text. Can you quote the text where it says that? Thanks. --sciencewatcher (talk) 20:51, 24 January 2009 (UTC)

Changed the wording, it now states "has the most evidence" or somesuch. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:46, 26 January 2009 (UTC)

Bowed to protests

Latest comment: 15 years ago5 comments3 people in discussion

Tekaphor marked "The Royal Colleges later bowed to protests by patient groups and endorsed using ME along with CFS" as failing verification. If you look at the full text, although it doesn't use those exact words, it does appear to be a fair summary of this part of the report:

The patients’ organisations were among the harshest critics, and the report was seen by some as a cogent criticism that patients’ views had not been included within the report. Now a new report has been published, and we hope that it will mark a turning point in the history of the illness. A working group on Chronic Fatigue Syndrome and Myalgic Encephalomyelitis or Encephalopathy, the name preferred by patient advocate groups in the UK, was set up in 1998 to report to the Chief Medical Officer of England and Wales.4 The fact that both names for the illness were used symbolises respect for different viewpoints whilst acknowledging the continuing lack of consensus on a universally acceptable name.

If you want to reword it, go ahead (you'll also need to to the sub-article as it uses the same wording). --sciencewatcher (talk) 16:10, 25 January 2009 (UTC)

OK, it wasn't as bad as I initially thought, but Ward20's recent rewording more accurately reflects the source. As for my edit summary, I now realise you meant the CFS "sub-article", right? - Tekaphor (TALK) 03:27, 26 January 2009 (UTC)

These edits introduced some inaccuracies and bias. The article was a commentary not correspondence (letters to the editor). A reference is now out of place. The group's name is CFS/ME Working Group, or Working Group on CFS/ME, depending on where you look in the source. The wording was changed from an almost verbatim statement agreeing with text from the source (posted above by Sciencewatcher) to pov wording (the Lancet also was critical). The edit was less accurate, and less informative about the lack of consensus for the name. I edited the article to address the above and used direct quotes from the sources. Ward20 (talk) 20:31, 28 January 2009 (UTC)

RetroS1mone reverted my edit with the summary, "summary correct two editors agreed at talk". I don't see that above. Ward20 (talk) 01:45, 29 January 2009 (UTC)

Settled, thank you RetroS1mone. Ward20 (talk) 05:25, 29 January 2009 (UTC)

Mitochondrial dysfunction test

Latest comment: 15 years ago8 comments4 people in discussion

New research here: [64] IJCEM is Medline-listed, this current article has yet appear there. Should a mention of these results go in the Mechanism section? It seems rather more than an unproven hypothesis to be dismissed along with the others, given the striking correlation between test scores and severity of illness. See Fig. 4 on p. 11 especially. Sam Weller (talk) 20:02, 26 January 2009 (UTC)

Methinks it would carry a wee bit more weight if it was done by university/medical researchers, rather than a GP who sells dubious supplements, a physicist, and a "laboratory" that has a hotmail email address and a PO box address. Especially considering nobody else has validated either the test or the results. --sciencewatcher (talk) 20:16, 26 January 2009 (UTC)

International Journal of Clinical Experimental Medicine - wait for duplication, more mainstream publication, greater research support from multiple researchers and general acceptance. If it's true, it'll be reproduced and expanded upon. WLU (t) (c) Wikipedia's rules:^simple/_complex 22:04, 26 January 2009 (UTC)

The GP concerned, Dr Myhill, is well respected by patients groups internationally and her works are referenced in US, UK and Australian patient forums. Yes, her practice does sell mineral supplements to her patients, but why is that relevant to the soundness of this piece of research? She is an advocate for the position that CFS is due to biological causes, and this was a sound piece of work. The physicist (Norman E Booth) is a well published researcher from the Department of Physics, University of Oxford, UK, and the third author ("a laboratory that has a hotmail email address") is Dr John McLaren-Howard, who at the time of this study was Laboratory Director of the Biolab Medical Unit, which is a reputable UK Lab specialising in environmental medical testing (and where these test were carried out). Yes, Dr JMH has since retired from Biolab and moved from London to a more relaxed Devon, but why is that relevant to the validity of this paper?

Either these tests are entirely fraudulent or "they present a strong case for an ATP profile test which shows "a remarkable correlation is observed between the degree of mitochondrial dysfunction and the severity of illness (P<0.001)" [65]. As the authors state in their conclusions "The observations presented here should be confirmed in a properly planned and funded study. The biochemical tests should be done on CFS patients after, as well as before, appropriate interventions and possibly on patients with other disabling fatigue conditions. It would also be good to confirm the biochemical test results in a second (perhaps government-supported) laboratory."

So I agree with WLU's determination that we should wait. However, I feel that sciencewatcher's comments are hardly constructive and reflect more on his POV and personality flaws. — TerryE (talk) 17:19, 1 February 2009 (UTC)

If you look at dr myhill's website you will see it reeks of quackery and pseudoscience, and as I said she has been referred to the GMC more than once because of this. Yes, I do have a personality flaw: I can't shut my mouth when I smell bullshit... --sciencewatcher (talk) 18:10, 1 February 2009 (UTC)

"quackery and pseudoscience": no, we're not talking about CBT here; we are talking about Myhill's paper on her proposed Mitochondrial Function Test :lol: And yes, she has been referred to the GMC as can any doctor, but she was also exonerated as you didn't mention. — TerryE (talk) 23:11, 1 February 2009 (UTC)

Yes, she was exonerated. I think the GMC don't care about dubious treatments as long as you don't harm the patient. Anyway the point is that she is not a medical researcher, just a doctor, and the other people in the paper aren't either. The paper is basically experimental/pilot at best, until someone else validates the test independently. And as I've explained on my talk page, even if the research is valid it doesn't actually shed any light on whether CFS is organic or psychiatric (even though that seems to be the reason why the CFS patient community has latched onto it with such enthusiasm). --sciencewatcher (talk) 00:08, 2 February 2009 (UTC)

No, the point is that conclusions in a paper on a experimental and innovative test should have independent validation before being cited. It is irrelevant that the authors are not medical researchers; they only require appropriate domain expertise to support their contribution and in this case they do. -- TerryE (talk) 02:11, 3 February 2009 (UTC)

Deaths: Mirza, and A systematic review describing the prognosis of chronic fatigue syndrome

Latest comment: 15 years ago6 comments4 people in discussion

Why take out Mirza? It was reliably sourced the coroner ruled "renal failure as a result of chronic fatigue syndrome".[66] Is there a more reliable source that says otherwise?

Also, The paragraph starts, "CFS is unlikely to increase the risk of an early death."

Then immediately following, "A systematic review of 14 studies of the outcome of CFS recorded 8 deaths, two were unrelated to CFS, one person died by suicide, and the circumstances of death of the other five were unclear.[67]". I changed the text to agree with the reference, and then I read more of the study. I should have read the whole study before I changed the wording, sorry. The studies listed in the review article only followed patients for approximately 1/2 to 3 years and the article didn't compare the deaths with other data. I don't understand how the second sentence can be used with any of the material in the Deaths section as the mortality discussion in the review article did not discuss their significance to anything. Ward20 (talk) 02:40, 27 January 2009 (UTC)

Look at [68] - the pathologist takes a literal interpretation of "ME" - muscle pain with neurological inflammation: "'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia." But beyond that, Sophia Mirza is one death that wasn't studied and published in a peer-reviewed journal. Why so much emphasis on one death? I'm dubious about having her in the template at the bottom too. Is there a similar inclusion of otherwise non-notable individuals who have died of AIDS? Or cancer? It seems out of place and unnecessary to highlight a single person's death this way. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:57, 27 January 2009 (UTC)

Another point worth mentioning is that if you look at Sophia's mother's account of her illness, you'll see that Sophia limited her water intake to 4 fluid ounces per day because she believed she was allergic to water, and almost certainly this is what actually caused her death (the primary cause of death was renal failure due to dehydration). I'm not sure why the coroner thought the dehydration was caused by the CFS. I assume he just thought they must be linked, or maybe he didn't know about her limited water intake. --sciencewatcher (talk) 03:03, 27 January 2009 (UTC)

To rephrase, because I'll admit that my opinion isn't a burning certainty, what reasons are there to replace Mirza? I'm open to the option if we can decide that there's a solid reason that's not out of keeping with WP:MEMORIAL (though I think we've already passed that since it's more about notability questions and she's clearly notable). What's the recent literature got to say about her? Any mention in scientific journals? The section looks OK, but given the Smith, Noonan & Buchwald study was larger and longer, it seems worth emphasizing more. WLU (t) (c) Wikipedia's rules:^simple/_complex 12:05, 27 January 2009 (UTC)

I had a look yesterday on google scholar and pubmed, and didn't find much. Only the coroner's report and her mother's info. Basically what is on the sophia mirza page. If you look at the website set up by her mother, it has scanned copies of the death certificate and various correspondence. However I haven't found anything in any peer reviewed journals actually discussing her case. --sciencewatcher (talk) 15:43, 27 January 2009 (UTC)

When there is nothing in peer review journals about her case it should not be in a main medical article right. There is all ready article for Mirza, she is notable bc of all media reports but that stuff is anecdotes and personal claims and is not for a medical article. RetroS1mone talk 05:34, 28 January 2009 (UTC)

Hooper

Latest comment: 15 years ago2 comments1 person in discussion

Anyone have hooper, 2007? I'm intrigued to see the yoyo study. WLU (t) (c) Wikipedia's rules:^simple/_complex 12:08, 27 January 2009 (UTC)

Never mind, found it. WLU (t) (c) Wikipedia's rules:^simple/_complex 12:33, 27 January 2009 (UTC)

Guido-s Revenge

Latest comment: 15 years ago16 comments7 people in discussion

I have asked at ANI if it could be determined if Guido-s Revenge, IP 87.112.34.51, IP 87.115.17.124, IP 87.115.17.165 are the same editor. Ward20 (talk) 23:04, 28 January 2009 (UTC)

The 87.* ip is Angela Kennedy. I doubt if Guido's revenge is the same person, but you never know. It would also be interesting to see if Guido's Revenge is the same ip as Guido. --sciencewatcher (talk) 23:13, 28 January 2009 (UTC)

I am wondering at why Ward20 is implying it is a conspiracy. RetroS1mone talk 01:36, 29 January 2009 (UTC)

Someone edited over the original post. This explains why I think they could be the same editors. It is called Wikipedia:Sock puppetry not conspiracy RetroS1mone. Ward20 (talk) 01:55, 29 January 2009 (UTC)

It is very clear that Guido's Revenge is the same as 87.112.34.51 (see Revision history of User talk:Guido-s Revenge). If, as Sciencewatcher above says, the 87* ip is the same as Angela Kennedy, then Guido's Revenge is indeed AK. I am just wondering, lloking at the amount of edits from that IP range, if semi-protection would not offer a monor solution to these postings by a sockpuppet of an indef blocked user. Fram (talk) 13:13, 29 January 2009 (UTC)

Yes pls and now IP 88.97.5.228 is doing the same, they are all the same. RetroS1mone talk 13:18, 29 January 2009 (UTC)

here is where 87.* signed herself as Angela. --sciencewatcher (talk) 15:35, 29 January 2009 (UTC)

Excuse me - this IS Angela Kennedy here. I am not involved in the above shenanigans. Sciencewatcher- get your facts right. Whoever signed themselves as 'Angela' is having a laugh with you... I am following this up to try and work out what has happened to make SW think he can make his claims. I am so sick of Wikipedia silly paranoid witch-hunts. Oh and by the way- Ellen Goudsmit, who I do not agree with over a lot of things - is nevertheless a real person not some sock puppet. Angela Kennedy 86.166.73.115 (talk) 16:25, 29 January 2009 (UTC)

Also "InBreed good rude" (WTF) seems to be someone's sock. --sciencewatcher (talk) 17:17, 29 January 2009 (UTC)

For those editors who do have active accounts, would you please sign in instead of using your IP(IP's)? With the many different new accounts posting lately, it sure would make it easier for the rest of the editors if you signed in and didn't use an IP to edit. I also reverted an anon. IP with these additions. Thanks, --CrohnieGal^Talk 18:11, 29 January 2009 (UTC)

Guys, can I just point out that the 87.xx IP range is not associated with Angela Kennedy - they're actually Confirmed as being belonged to a banned editor, per checkuser & the associated sock account has been blocked - Alison ^❤ 10:13, 30 January 2009 (UTC)

Ok, thanks. --sciencewatcher (talk) 15:11, 30 January 2009 (UTC)

Thanks, and sorry for the confusion. Good to know who the actual sockmaster is though! Fram (talk) 15:20, 30 January 2009 (UTC)

To clarify, the 87.xx IPs above are used by "Guido-s Revenge", which someone else has linked to User:Guido den Broeder - still not Angela Kennedy - Alison ^❤ 18:39, 30 January 2009 (UTC)

The 87.* ips are all from England, and Guido lives in Holland, so I doubt if it's him. Most likely Guido-s Revenge is someone else just using the name as a joke. --sciencewatcher (talk) 19:43, 30 January 2009 (UTC)

And to clarify further, on Guido's request - this account was neither Angela Kennedy nor Guido den Broeder. It's just some other person trolling. I was quite incorrect in linking it to Guido's account and had picked up the link from the block log - Alison ^❤ 20:58, 9 February 2009 (UTC)

Ellen Goudsmit

Latest comment: 15 years ago5 comments3 people in discussion

I am moving this unsign comment by "Ellen Goudsmit" from top of talk, "I've tried to correct factual errors (all of whihc support a psychiatric view) but it was not accepted.13:29, 29 January 2009 (UTC)" RetroS1mone talk 13:36, 29 January 2009 (UTC)

Another unsigned comment by IP, probally sock of banned user, they put it in a comment by Ward20 to make it look like it was Ward that said it,

"As a specialsit in the field, I find the whole article skewed towards a reductionist paradigm, focused on the cognitive-behavioural model. The introduction assumes that we all agree that CFS=ME, but we don't. I've tried to correct the info, with references, but these were not accepted. the info on CFS is therefore unreliable. Assumptions require testing. Even in the US."

Can we pls have this stuff stopped? RetroS1mone talk 13:46, 29 January 2009 (UTC)

I tried on starting a sock investigation for Ellengoudsmit and the 88.ip and Guido-s Revenge etc but I am to dumb to get the new SPI thing to work!! Can any one help? These are all London IPs and they are all saying this is a psychologisers article, they are socks or may be meatpuppets, it is strange this "Ellengoudsmit" shows up right following Guido-s Revenge banning. RetroS1mone talk 14:32, 29 January 2009 (UTC)

This is Ellen and I am not connected to psychologizers, to the contrary, (I actually invented the term 'psychologisation, see for example, the Psychologist, 1991) nor to Guido or Angela. I am one of the few researchers still studying ME (Ramsay defined, see my CV on David Axford's site) and have written a number of papers in peer reviewed publications. I am a real psychologist, I think the role of CBT has been overstated and I don't know what a sock is, aside from the garment. You can read my articles on the net, which should indicate that I know what I'm talking about. Some people have speculated about motives, but there are good reasons why patients might distrust any mental helath professional. There are only a few of us who are as objective as one expects scientists to be. As things stand, the article on CFS is poor. Very pro-psychiatry. Overstating the findings re CBT.

The illness CFS as described in 1988 is different from the illness redefined in 1994. The latter overlaps 97% with neurasthenia, see the list of symptoms in ICD-10, F48, hence the newspaper articles claiming that a treatment cured a person in three hours. Prof. Jason has shown in his research that the current case definition includes people who simply do not have CFS as initially described. However, as everytime I try and bring the article up to date someone removes my edit, I shan't go on. I'll leave the corrections to lay people, activists and politicians. —Preceding unsigned comment added by Ellengoudsmit (talk • contribs) 17:09, 29 January 2009 (UTC)

Ellen, I'm aware of your research. Some of it I agree with and others not. What matters for wikipedia is that you need to have a medically reliable source for any medical facts presented in the article (see WP:MEDRS). Conference proceedings and articles not indexed in pubmed are generally not MEDRS, which is why I have reverted them. This doesn't mean the info is wrong. Wikipedia isn't "the truth" and you shouldn't try to make it so. It simply represents the majority scientific/establishment viewpoint along with significant minority viewpoints, all properly referenced. Please read WP:NPOV and the other major policies. --sciencewatcher (talk) 17:18, 29 January 2009 (UTC)

Change to CBT: effectiveness, etc.

Latest comment: 15 years ago15 comments6 people in discussion

I've made some changes to the CBT section of the main CFS article and the treatment sub-article. As well as updating the reference for the BMJ Clinical Evidence to the 2008 version I've also added some info regarding the quality of the evidence. Both BMJ and Cochrane say the quality remains low, so we should be saying that, as these are the 2 most authoritative sources. If you have any objection, please discuss here rather than reverting.

There is still a ref to the old 2000 BMJ clinical evidence review in the treatment article regarding magnesium - it will need updated, but I don't have access to that bit of the review so I don't know what the new version says about magnesium. --sciencewatcher (talk) 20:48, 31 January 2009 (UTC)

I think there is still only the one Mg trial. Sam Weller (talk) 22:54, 31 January 2009 (UTC)

For discussion, I agree with the content of the edit, but I believe these type of statements should be attributed. For example, A review article stated foo." to agree with WP:ASF. Ward20 (talk) 22:35, 31 January 2009 (UTC)

Agreed with both of you. We should mention that the CBT trial patients are probably not representative of the whole CFS/ME population (not in the ordinary way of things e.g. volunteers for randomization differ from those who decline), but in the important way that Chambers mentions and was discussed above. They had to be well enough to attend specialist clinics for treatment. So the efficacy of CBT is simply unknown in what seems to be rather a large group of severely ill (or is that affected?) patients. Sam Weller (talk) 22:54, 31 January 2009 (UTC)

I've attributed everything I put into the treatment article, although in the main article I just summarised the evidence is "low quality", as those words are used in the BMJ article, but if you want to reword it go ahead. If you want to put in a quote you would need about 5 sentences, which is why I didn't do it. And if you're rewording for ASF I think the previous sentence put in by Retro would need work ("most evidence supporting its effectiveness") as that working doesn't appear in any review. The issue of lack of evidence for severely ill is in the treatment article, but we should probably put a sentence into the main article as well about that. --sciencewatcher (talk) 00:18, 1 February 2009 (UTC)

The BMJ website about clinical uses "low quality" and they say what they mean with "low quality" it means they expect more studies can change the numbers. That is not what most people think when they read low quality that should get explained. The BMJ uses a graphical thing to, that is not saying low quality, it is saying CBT is highest quality for all CFS treatment. Does Cochrane say low quality I do not see that, it says more research is needed every science article says that about every thing in science. The spcifiic, they say there is not alot from evidence at followup. Do they say all studies on CBT are low quality when they do pls quote it bc i do not see. Also I did not say most evidence supporting that was not me. RetroS1mone talk 03:18, 1 February 2009 (UTC)

Sounds like the BMJ doesn't use low quality differently than how it is usually used, to indicate low internal validity, small sample size, or short duration. II | (t - c) 05:02, 1 February 2009 (UTC)

Correct, "low quality" means low methodological quality. The BMJ groups the CBT trials into 4 groups according to outcome. 1 group is classed as "low" and 3 groups "very low" quality. The other treatments vary between low and moderate, but the CBT trials stand out for their overall poorness. So it is the reverse of the truth to say that "CBT is highest quality for all CFS treatment." There are more trials of CBT, so there is more evidence of efficacy, but those trials are outstandingly poor quality. Sciencewatcher's edit was entirely in line with the BMJ. Sam Weller (talk) 10:50, 1 February 2009 (UTC)

I didn't see any mention of "highest quality for all CFS treatment", but if that is in the source it can also go into the article. Also, while Retro is right that Cochrane didn't actually say "low quality", they did say "Whilst the evidence base for CBT as a stand-alone treatment for CFS continues to expand, there is a surprising lack of high quality evidence on the effectiveness of CBT alone or in combination with other treatments to inform the development of clinical management programmes for people with CFS."

I'm also surprised that Retro doesn't think BMJ Clinical Evidence is MEDRS. Previously we had a reference from the older review (2000) from BMJ Clinical Evidence. That one did have a pubmed entry, but the pubmed was for "extracts from clinical evidence". I assume that eventually this will be updated to include the extracts from the 2008 review. But even though it isn't pubmed indexed yet, I don't think you can argue that it is not MEDRS just because it's only on their website. Any review from 2000 is pretty much useless with regard to CFS because so much has happened since then. --sciencewatcher (talk) 16:17, 1 February 2009 (UTC)

Considering the apparent stance that because CBT has the most "evidence" (who cares about quality and caveats?) it's therefore immune to any criticism, I can't say I'm surprised that RetroS1mone thinks BMJ Clinical Evidence isn't "MEDRS". In the "Streamlining the Treatment Section", I was asked, "do you know about another medical problem in there is so many RCTs for one treatment and so many other things that got tried without good results ..." etc. I don't know of other medical conditions besides CFS where "fundamental problems" in the research raised in systematic reviews are routinely excluded as "OR" and "POV". I'm not sure why she thinks that CBT for CFS represents a good example of large amounts of unquestionable research for a medical condition, and somehow I doubt that 9 RCT's (some of poor quality) is a world record. Additionally, it's not like other treatments have received heavy attention; one magnesium study, two carnitine studies, two EFA studies, a few others too; after 20 years? C'mon! Even Chambers et al 2006 conclude that "The evidence base for supplements and miscellaneous interventions for CFS/ME remains very limited." - Tekaphor (TALK) 09:46, 2 February 2009 (UTC)

I do not like disappoint Tekaphor and Sam but I did not say that BMJ Clinical evidence is not medrs, I asked only. BMJ writes what they mean, "low quality" they are also give a ranking system, CBT is two arrows up. You are finding best review you can on your position and using it and closing eyes on other reviews, closing eyes on alot of RCTs. RetroS1mone talk 02:29, 3 February 2009 (UTC)

Retro, you again revered my "moderately efficacious" comment replacing it with text which isn't in any review. Your edit summary says "moederate efficacous is not in reviews", but if you look at the Malouff review (i.e. the reference I placed just after the comment), you'll see that even the abstract says "Results indicate that CBT for chronic fatigue syndrome tends to be moderately efficacious". And also your addition of "low enough that further studies are likely to change the overall conclusions" is a bit of OR. The review does not say that at all. It actually just says "(low quality evidence)" and "(very low quality evidence)" for every single group of CBT research. And FYI I don't have a position on CBT, I'm just trying to get the facts. One thing I did notice when re-reading the Chambers review: there are a lot of CBT studies with a "validity" of 17-18 out of 20, which I assume is high. I had mis-read it before and only looked at the newer studies included in the update to the review, which mostly had low quality scores. Reading through the Chambers review I don't see any summary of the validity of the CBT trials (unless I missed it). So how does this fit with BMJ saying they are all low quality? --sciencewatcher (talk) 03:55, 3 February 2009 (UTC)

You are right SW i am sorry it does say it. I am on frustration bc the good sources say CBT is one from only two treatments that work, can we say both it treatment w highest proof and it is moderately effective. RetroS1mone talk 05:08, 4 February 2009 (UTC)

I think we should stick to exactly what the reviews say. Anything else is guaranteed to start another edit war. The sources just say that CBT and GET are the only treatments shown to be effective/beneficial, and we already say that in the first paragraph of the treatment section. So I think we should stick to saying CBT is "moderately effective" in the CBT section, which is what the reviews say. And as for the quality of evidence, I'm still not sure what we should say. BMJ Clinical Evidence says "low quality evidence" and "very low quality evidence" whereas Chambers gives validity scores and about half the CBT trials have a score in the high range. So unless someone can figure out a wording that explains this, I'm going to remove "although according to one review, the quality of the evidence is low enough that further studies are likely to change the overall conclusions" from the text. --sciencewatcher (talk) 15:41, 4 February 2009 (UTC)

The Cochrane validity assessment looks for "risk of bias", and they discuss the biases at length. For an overview see the graph (p.12) and table (p.13). There's about 25% "high risk", ~50% "unknown risk", and ~25% "low risk", IOW, only 25% of the trials could be assessed as "high quality". The discussion of bias and strength of evidence looks to be in line with the BMJ verdict. I'm unsure what "although according to one review, the quality of the evidence is low enough that further studies are likely to change the overall conclusions" means. What we're looking at is "moderate evidence of effectiveness in mobile patients" (Cochrane as well as Chambers points to the lack of research in severely ill patients) but "according to two reviews, the quality of the evidence is low." Sam Weller (talk) 18:30, 4 February 2009 (UTC)

Dr. Jacob Teitelbaum

Latest comment: 15 years ago3 comments2 people in discussion

I was just looking at the article for Dr. Jacob Teitelbaum, and I think it could use some NPOV work and probably needs some citations. Right now, it reads very much like the good Dr. himself wrote it, or a fan (of which I am distinctly not one). I figured someone here might want to take on the project of going over it a bit. While I'm a Patroller on another wiki, I don't do a lot of editing on Wikipedia itself, so I'm not familiar with what the standards are for various things, including whether the article has any relevance at all or if it should be Proposed For Deletion (or whatever it is you do here). Anyway, just thought I'd throw it out there in case anybody's looking for something to do. :) --Rob (talk) 23:52, 19 February 2009 (UTC)

I am thinking, this dr is notable bc he is on tv shows and interviews but the article is alot of puffery, you are right!! It is like a resume and alot of trivia and advertising for his website and books and stuff, i changed some things. RetroS1mone talk 04:29, 20 February 2009 (UTC)

Yeah, that was very much my opinion as well. --Rob (talk) 02:33, 21 February 2009 (UTC)

HYPOCORTISOLISM and CFS Treatment Research

Latest comment: 15 years ago3 comments2 people in discussion

This posting is for information purposes and I freely admit at the outset, does contain an element of original research. It concerns recent progress into the nature of hypocortisol and HPA axis function in CFS, by a number of researchers including CDC scientists. In 2007 a research team using engineering principles, produced an advanced model of the human HPA axis that showed two steady states of function exist for the HPA axis; one of normal function and another of low (hypocortisol), such they say, as found in CFS. In contrast it showed high cortisol (such as in depression) is an unsteady state. The initial testing of the model produced results that closely mirrored actual measured changes in subjects. This was an important development not yet fully appreciated. PMID 17300722

Until recently the dynamics of the model had not been formally considered in the development of treatment strategies. However in Jan this year a paper has been published where the researchers used this model-based methodology to estimate robust treatment courses for displacing the HPA axis from an abnormal hypocortisol steady state back to a healthy cortisol level. Another surprise was in-store, quite counter intuitively it was found in treatment that cortisol must be further suppressed for a short period until adrenocorticotropic hormone (ACTH) levels exceed 30% of baseline. Treatment may then be discontinued, and the HPA axis will naturally progress to a stable state defined by normal hormone levels. these findings challenge the conventional treatment strategy of supplementing cortisol levels, an approach based on steady-state reasoning. PMID 19165314

Whilst it may be some time before such findings translate into practical treatments, it does have implications for some current treatments. Clearly it throws further doubt on treatments aimed at supplementing cortisol. But in addition has implications for the use of anti-depressants in CFS (where there is no depression) and sometimes prescribed in an attempt to improve sleep or reduce pain. Anti-depressants more commonly act by increasing availability of serotonin and thereby reducing cortisol, however the model indicates this may be counterproductive in CFS. Although it shows that a combinations of treatment duration and cortisol suppression may be varied successfully over a large range. Nonetheless there exists a minimum level of cortisol suppression below which the treatment fails regardless of how long conditions are maintained. So low doses of anti-depressants over a prolonged period are unlikely to be of benefit. The question remains that if the suppression level is not adequate does this over time further ratchet down the patient to a lower level where even greater suppression will be needed to treat? The paper discusses a number of treatment possibilities, but does not include the use of anti-depressants. In summary it says The concentration of biologically available cortisol could in principle be altered by binding proteins (such as CBH) or metabolizing enzymes to inhibit negative feedback to the HPA axis without affecting the synthesis and accumulation of ACTH.

Although a large proportion of CFS patients have hypocortisol, it is not yet clear what role correction would play in recovery, but certainly without correction say the authors, the persistance of symptoms and therefore recovery is unlikely. Which raises the possibility in future of cortisol testing to confirm controversial supposed treatment successes! We are sure to hear more about this model and can assume treatments will be researched given the CDC and CFIDS Association’s involvement with it. Jagra (talk) 04:29, 4 March 2009 (UTC)

It would be nice if this all panned out, but I suspect we just don't know enough about how the HPA axis works yet. This study is just a mathematical model, and from what I see it looks quite simple. The HPA axis is a lot more than just 3 hormone releasing bits and GC receptors. The HPA axis is modulated by various parts of the brain (pre-frontal cortex, cortex, amygdala, and probably others) and I think we really don't know enough about these interactions to even start building a mathematical model. My own view is that it is the pre-frontal cortex that is the main problem, as it controls long-term goals, emotion and stress and is also a strong modulator of the HPA axis. --sciencewatcher (talk) 15:28, 4 March 2009 (UTC)

Whilst I share your sentiment regarding the future of this work, I am more optomistic that it will lead to practical treatments. The sophisticated mathematics and functional modelling has already advanced our understanding of HPA axis function, and more than that it closely predicts test results in-vivo. A lot is known about the HPA axis, it is actually considered centrally controlled by the hippocampus /amygdala though neurotransmitter GABA. This review establishes the role of GABA in CFS; PMID 19085525. These structures in evolutionary terms are one of the brains most primitive parts, sure other higher stuctures such as those you mention will have indirect influence on these, but then one must question whether any such observed changes are due to cause or effect? I think the MR / GR balance is more pivotal, and to show that this could be altered and stabilised without the need for ongoing drugs is a major advance. Once this is acheived (even in models of illness) then will be the oppurtunity to study precipitating events and to so rule in or out the myriad of behavioural speculation. Jagra (talk) 23:28, 4 March 2009 (UTC)

US Disability Claims

Latest comment: 15 years ago5 comments4 people in discussion

I believe any discussion of CFS should state that there is one 'objective' test for a subset of CFS. That is, the Social Security Disability benefits law (since 1998) specifically states that an abnormal result of a 'tilt table test ' is an objective and often-determinative test for benefits. Further Wikipedia’s page on tilt table testing does not reference CFS. I was trying to explain how to apply for benefits and I turned to Wikipedia as a reference and was astonished to find this omission. This test has resulted in very substantial benefits that would not have otherwise been paid. (I know of millions of dollars paid, that would not have been obtained without this clearly ‘objective test.” Further private disability insurance companies seem to have adopted the tilt table test following SSDI's lead.

I have a second addition I believe is important. The Wall Street Journal editorial board has twice opined that CFS is not a disability within the meaning of disability claims. They relied on one particular researcher ,I recall, and after years of complaining the Center for Disease Control conducted a ‘confirming’ study of that researcher’s initial findings and NPR announced it recently. The CDC confirmed that self-reporting CFS patients in South Georgia were 6 times more likely than people without CFS (self-reporting) complaints to recall serious childhood abuse. There is more to it than this, and it is beyond me, but with two titans like WSJ and CDC lining up on the subject it seems that changes are coming. (I did a Google search of the name of the researcher CDC said it was confirming recently, Feb. 09, and found the WSJ connection from a few years back. ) Mark H. Gibbons (talk) 03:39, 9 March 2009 (UTC)

To my knowledge and checking with the Social Security guidelines (at http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html) on CFS, a tilt table test is one of the several listed signs, but is not required. Each US state, and even SSDI examining doctors, will have different criteria they choose to use in order to confirm a CFS diagnosis. (For reference, I have a diagnosis of CFS and am on SSDI with that as the primary disabling condition as of several years ago. The SSDI examining doctors did not require a tilt table test of me, although my medical records did show low blood pressure and reported neurally mediated hypotension.)

While the SSDI memo may indeed be worth linking to here, I don't think the article needs a great deal of information about SSDI determinations in it, nor should Wikipedia attempt to offer such. (For those outside the USA, it may be worth noting that as Social Security or Medicare determinations go, so goes most private insurance, so SSDI/Medicare policy WRT conditions and treatment is rather important, just as NHS policy is influential on private care in the UK.) Feyandstrange (talk) 08:14, 23 April 2009 (UTC)

Whilst this may be true in the USA it is not the case in all countries with national health schemes, other criteria apply. With some common sense though the US seems desined to go down the same track, although private health insurance seems likely to prevail?

These appear to be the papers from the CDC on the subject; PMID 19124690, PMID 17088506 I would question though if childhood trauma is a relevant factor then why were other forms of trauma not included in the studies, such as car accidents, serious illnesses, near drownings, etc after all these are factors in other chidhood initiated conditions, known to influence HPA development? and can only say that the study design appears flawed and possibly gives a skewed result? Jagra (talk) 00:15, 11 March 2009 (UTC)

Jagra, I have read that these childhood-trauma studies use the CDC's new "empirical" definition, which seems to introduce some problems.[69][70] - Tekaphor (TALK) 02:01, 17 March 2009 (UTC)

Indeed and the 'empirical definition' is not universally accepted, yet another definition we need to clarify when referenced in the Article. I can only guess why the CDC might want to quote increased prevalence rates for CFS of 2.5% up from 0.25% under Fukuda! But the sting in the tail is that to acheive this figure the new definition ropes in psychiatric disorders by broadening the case definition and including 'role emotional' factors and altering the 'fatigue criterion'. The tail will likely end up wagging the dog!

In a comparision of the CDC Geogia figures, it was found that the number of 'CFS' diagnosis increased 275% using the emperical definition instead of Fukuda, prior psychiatic illness was not a basis for exclusion. A more recent study by concerned researchers has shown that 38% of patients with a prior diagnosis of Major Depressive disorder were misdiagnosed as having CFS by the the 'empirical definition'.

As childhood trauma is known to lead to adult high cortisol and psychiatric disorders, then one can see how an 'empirical definition' cohort could skew results of the two papers I listed above. Jagra (talk) 05:30, 21 March 2009 (UTC)

Wireless Connection?

Latest comment: 15 years ago9 comments4 people in discussion

I've seen mentioned by at least 3 sources a possible connection between wireless radiation and CFS. I wonder if there is a way to further establish a link and show it to be a non-original idea so it can be mentioned in the wikipedia article.

For example, one is B. Blake Levitt (award-winning medical and science journalist) in her book on Electromagnetic Fields. She hypothesizes a correlation. One of her interesting points is that CFS originated around the 1980s when personal home wireless devices started becoming popular.
Another example is Paul Doyon, who claims his CFS was cured by staying away from wireless environments. He wrote a long list of connections between CFS symptoms and wireless health effects.
Then there is Don Maisch, who says unplugging a DECT cordless phone may have helped one lady recover from her CFS (http://www.emfacts.com/papers/dect.pdf).
The BioInitiative Report also mentions that reducing EMF radiation can help improve symptoms in people w/ CF. (http://www.bioinitiative.org)
Finally, you have at least 6 studies in different countries in PubMed showing greater prevalence of symptoms like fatigue in proximity to mobile phone base stations.

Hence, is it fair to say it is not an original idea that wireless radiation might somehow be correlated to CFS? Pensees (talk) 22:52, 12 March 2009 (UTC)

These sources seem very similar (if not identical, like the discredited bioinititive report) to those you tried and failed to get inserted on the Electromagnetic hypersensitivity article, back when you last edited in September. Verbal chat 22:57, 12 March 2009 (UTC)

There are serious flaws with the electrosensitivity article, but I gave up for a few months being because you seem to be monitoring it day and night. ;-) BioInitiative was thought worthy enough by EEA (European Environment Agency) to urge for precaution, and European Parliament are starting to consider the wireless issue seriously, which I think is partly because of Cindy Sage, one of the authors of that report, so I wouldn't say discredited. This report has brought much hope. There are a lot more voices today-- U.Pitt Ronald Herberman, Neurosurgeon V. Khurana (he acknowledges the problem of electrosensitivity...) Pensees (talk) 23:38, 12 March 2009 (UTC)

Cindy Sage, the author with the COI? Much hope to charlatans. When there are a few WP:MEDRS that shows some credible link, not claims of "one lady" etc, then try again. Verbal chat 07:53, 13 March 2009 (UTC)

Um, generally the best reaction to rejection of sources by the preponderance of knowledgeable good faith editors is to find better sources, not try to sneak them into a different article. 74.179.112.100 (talk) 05:25, 14 March 2009 (UTC)

To be fair, if you take a look at the talk page for the electrosensitivity article Verbal mentions you'll find much of the rejection focuses on ad hominen argument e.g. on Cindy Sage, instead of focusing on the 2000 or so studies mentioned in that report, many of which you can look up on PubMed. The report itself was well-received by the European Environment Agency. I think its ideas as well as those of similarly minded concerned citizens are making its way into US Congress as well. (http://domesticpolicy.oversight.house.gov/story.asp?ID=2199). By the way, I am not part of BioInitiative Working Group, but I think they've done a good job in showing there's more evidence than we realized. Pensees (talk) 08:49, 14 March 2009 (UTC)

CFS is appropriately mentioned at EHS, but it may be that the topic of a connection is relevant enough to warrant mention here. A brief GoogleScholar search turned up a couple third-party secondary sources which mention that the possibility of a link has been mooted. The most reliable (based on sourcing, I have not perused their contents and do not guarantee that they are the most useful for this article) are: Definition, Epidemiology and Management of Electrical Sensitivity Report for the Radiation Protection Division of the Health Protection Agency, Psychological factors associated with self-reported sensitivity to mobile phones, and Can evidence change belief?: Reported mobile phone sensitivity following individual feedback of an inability to discriminate active from sham signals. Eldereft on a public computer 74.179.112.100 (talk) 14:45, 14 March 2009 (UTC)

I just did peruse the contents, and the placebo controlled study was negative (i.e. people were NOT sensitive, even though they believed they were). Also look here. Basically people have symptoms when they believe there is an EM field, but NOT when there is actually one! So essentially it is psychological. I'm guessing this is probably not something that people will want in the CFS article. --sciencewatcher (talk) 15:22, 14 March 2009 (UTC)

Sorry, I did not mean to imply that it is a medically reasonable hypothesis, only that it has been suggested. Electromagnetic hypersensitivity is absolutely unrelated to cellphones, powerlines, WiFi, or any other weak source of long-wavelength electromagnetic radiation. Looking a little further, electromagnetic radiation does not seem to come up much in discussions of the causes of CFS, even ones discussing the less well supported hypotheses. Even for Pathophysiology of chronic fatigue syndrome, giving zero weight to this hypothesis seems pretty reasonable. Eldereft on a public computer 74.179.112.100 (talk) 21:50, 14 March 2009 (UTC)

Chronic fatigue syndrome vs Chronic Fatigue Syndrome

Latest comment: 15 years ago2 comments2 people in discussion

Is there a rationale why this page is named Chronic fatigue syndrome and not Chronic Fatigue Syndrome? If you Google either, the vast majority pages use Chronic Fatigue Syndrome (capitals for C, F & S). I can see that the current redirect from Chronic Fatigue Syndrome originally had content, but was later changed to a redirect to Chronic fatigue syndrome. Both pages seemed to have been created in 2002 and, I assume, the prior content on the current redirect page was moved here. —Preceding unsigned comment added by Enquire (talk • contribs) 22:39, 13 March 2009 (UTC)

See WP:MOS. Taroaldo (talk) 22:55, 13 March 2009 (UTC)

More on Caveats

Latest comment: 15 years ago2 comments2 people in discussion

I would have to agree with feyandstrange, the purported benefits of GET and CBT have not been successfully reproduced in studies done outside the UK. The work done by Wessley is heavily biased in its selection criteria i.e. the Oxford Definition (one criteria, fatigue lasting six months or more), Dr. Leonard Jason has shown that even using the slightly more stringent 1994 CDC criteria, it is still possible to classify about 40% of patients who just have pure depression as having CFS. I would strongly suggest removing any material that makes reference to research based on flawed diagnostic critera.--82.22.162.13 (talk) 12:44, 17 March 2009 (UTC)

The right way to do this is to add caveats from the papers concerned. There is consensus for this, see discussion above. Certainly different results can occur when different selection and/or diagnostic criteria are used, and we should be particular not to generalise, but to spell out the subgroups involved. Jagra (talk) 03:57, 24 March 2009 (UTC)

^ Carruthers BM; et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (1): 7–36. doi:10.1300/J092v11n01_02. {{cite journal}}: Explicit use of et al. in: |author= (help)

[carr-1] Carruthers BM; et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols" (PDF). Journal of Chronic Fatigue Syndrome. 11 (1): 7–36. doi:10.1300/J092v11n01_02. {{cite journal}}: Explicit use of et al. in: |author= (help)

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