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The IoM report offers more than just a good source, it is an extensive piece of research about the whole context of CFS. In the case of the history of the disease the IoM helps close a number of gaps and inaccuracies, I've taken the quoted sources in most cases rather than the IoM itself to produce a new rendering of the history section which I'm posting here for comment. I've not included the current paragraph on XMRV, which personally I'd prefer to see go, but previously it was felt this should stay, my proposed text would not affect this. There are two references which editors should give particular consideration to, one is to the IoM itself re: Ramsay and the other is to Speight 2013 where the publication might not be thought adequate - but my thinking is that if the IoM has quoted it then validity is established.
Myalgic Encephalomyelitis
From 1934 onwards, outbreaks of a previously unknown illness began to be recorded by doctors. [1] [2] Initially considered to be occurrences of poliomyelitis the illness was subsequently referred to as “epidemic neuromyasthenia” [3]. In the 1950s, the term “benign myalgic encephalomyelitis” was used in relation to a comparable outbreak at the Royal Free Hospital in London [4]. The descriptions of each outbreak were varied but included symptoms of malaise, tender lymph nodes, sore throat, pain, and signs of encephalomyelitis [5]. The cause of the condition was not identified although it appeared to be infectious, and the term “benign myalgic encephalomyelitis” was chosen to reflect the lack of mortality, the severe muscular pains, evidence of damage to the nervous system, and to the presumed inflammatory nature of the disorder. [1]. The syndrome appeared in sporadic as well as epidemic cases [6]and in 1969, benign myalgic encephalomyelitis appeared as an entry to the International Classification of Diseases under Diseases of the nervous system. [7]
The authors of a review of 15 outbreaks of benign myalgic encephalomyelitis carried out in 1970, concluded that these were psychosocial phenomena caused by either mass hysteria on the part of the patients or altered medical perception of the community. [8]. These conclusions were based on the higher prevalence of the disease in females in whom there was a lack of physical signs,on that basis the authors recommended that the disease be renamed “myalgia nervosa.” Despite strong refutation by Dr. Melvin Ramsay, the proposed psychological etiology created great controversy and convinced health professionals that this was a plausible explanation for the condition [9].
The continued work of Dr. Ramsay demonstrated that, although the disease rarely resulted in mortality it was often severely disabling" [10], because of this Ramsay proposed that the prefix “benign” be dropped [11] [12] [13]. In 1986, Dr. Ramsay published the first diagnostic criteria for ME, in which the condition was characterized by:
• a form of muscle fatigability that even after minimal physical effort, 3 or more days elapse before full muscle power is restored.
• extraordinary variability or fluctuation of symptoms even in the course of one day.
• an alarming chronicity . [14]
Chronic Fatigue Syndrome
In the mid-1980s two large outbreaks of an illness which resembled mononucleosis drew national attention in the United States. Located in Nevada and New York, the outbreaks involved an illness which was characterized by “chronic or recurrent debilitating fatigue and various combinations of other symptoms, including sore throat, lymph node pain and tenderness, headache, myalgia, and arthralgias”. An initial link to the Epstein-Barr virus saw the illness acquire the name “chronic Epstein-Barr virus syndrome”. [15] [16]
The United States Centers for Disease Control and Prevention convened a working group tasked with reaching a consensus on the clinical features of the illness. Meeting in 1987, the working group concluded that CFS was not new and that the many different names given to it previously reflected widely differing concepts of the illness’s etiology and epidemiology. [17]. The CDC working group chose “chronic fatigue syndrome” as a more neutral and inclusive name for the illness but noted that “myalgic encephalomyelitis” was widely accepted in other parts of the world. [15]. The first definition of CFS was published in 1988 and although the cause of the illness remained unknown there were several attempts to update this definition, most notably in 1994 (), [18]. In 2006, the CDC commenced a national program to educate the American public and health care professionals about CFS. [19]
References
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-- In Vitro Infidelium ( talk) 10:33, 3 December 2015 (UTC)
The CFS article has an exceptional number of sub articles, a total of 6. In comparison neither Fibromyalgia nor Rheumatoid Arthritis have any subarticles. The Multiple sclerosis article does have five subarticles but this is an illness for which there is a substantially greater body of MEDRS. According to http://stats.grok.se/ the main CFS page received 30267 visits in November 2015, the subarticles with their November visitor numbers are:
Maintaining these pages, particularly keeping them in line with updates to the main page involves effort and it is clear that several have been barely touched in years. The reason why there are so many sub pages seems perhaps more to do with the history of edit wars than actual encyclopaedic need. Two sub articles are in reasonable shape: Clinical Descriptions and Treatment, and both of these can probably be fairly easily improved with material from the IoM and P2P reports. The other four seem to me to be in a fairly parlous state, suffering from multiple problems including in some parts substantial WP:SYNTH. My thinking is that these are candidates for redirection back to the main article as per WP:RDR which would leave the option that the articles could be rebuilt at some future date if the need is established. With the four articles effectively deleted, this would allow concentration on improving and maintaining the main CFS article and the two subarticles in a cohesive manner. -- In Vitro Infidelium ( talk) 18:04, 12 December 2015 (UTC)
Proposal to redirect Alternative names for chronic fatigue syndrome article – as discussion above. The sub article is a mish mash of material which lacks encyclopaedic value. The article as written is problematic because it presents what are in effect differing conceptions and then presents them as reducible to differing names for a single disease.
There was some material on the sub article page that was missing from the main article – I’ve corrected this with edits to the History and Controversies section. Past editing has resulted in a non encyclopaedic conflation of historical naming with the ongoing and current ME-CFS (and latterly SEID) debate in clinical contexts, I've put what are now largely redundant names in the history section. Conflation of media controversy with medical controversy is also unencyclopaedic and I’ve split the non medical term yuppie flu off into the controversies section.
All of which I think leaves the sub article redundant. If no one objects by next Monday I’ll put the redirect in place then – unless of course anyone else feels that it’s appropriate to go ahead before then.-- In Vitro Infidelium ( talk) 10:09, 11 January 2016 (UTC)
In response to the suggestion made above to redirect some of the sub page articles Science Watcher noted the need to recover any relevant material to the CFS article before making the redirects, this was a simple task for the Alternate names article but more complex for the Pathophysiology article. Of the 154 references on the Path sub article the vast majority are unreplicated single study refs, or are now irrelevant – XMRV etc, or are woefully out of date; only around 20 or so strongly meet MEDRS – I’ve logged these at: https://en.wikipedia.org/?title=User:In_Vitro_Infidelium/sandbox along with comments of their value etc. If anyone feels that log belongs here, feel free to copy and paste.
The Pathophysiology sub article has a tag from 2009 ! identifying it as “too technical to understand”, having gone through the source list my conclusion is that the article is simply incomprehensible, unsalvagable and needs to be redirected with some urgency.
Proposal to redirect: If no one objects I will redirect the Pathophysiology article to the CFS page as of next Monday.
To ensure that material from the sub article is not lost, I’ve further updated both the Risk Factors and Pathophysiology sections of the CFS page, using those references from the sub article that were:
-- In Vitro Infidelium ( talk) 10:15, 13 January 2016 (UTC)
I have made substantial changes to the Management section intro and to the CBT paragraphs – the GET and other paragraphs still require work. I had hoped to update the Treatment article in tandem with the main article however the scale of work has precluded that and I am now much less optimistic about the Treatment article being salvageable.
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Many parts of the article are unclear, contradictory, and/or confusing to laymen (who aren't used to navigating such hotly disputed ground in medicine). Examples:
I'd guess that editors may be too focused on POV/NPOV and end up adding content in parallel instead of thinking as authors/editors. If some statement seems unacceptably "biased", the correct response isn't to add a statement after that appears equally biased in the opposite direction. This isn't physics: they don't cancel each other out, they leave the reader confused and unsatisfied (or worse, convinced that one "side" has to be "right"). If there is no consensus among experts (or contradictory/insufficient evidence, etc) on some point, the article should just say that outright.
There's also a little too much defensiveness and victim's-advocacy-style statements (eg "this is a real disease, please don't joke about it", "these people suffer a lot, please don't make fun of them"), such as:
This kind of stuff isn't particularly helpful or informative, should likely be stripped since it's dead weight for the article.
Also, the article should probably note somewhere that CFS is generally (and notably) a wastebasket diagnosis in clinical settings: it's usually diagnosed not by specific criteria (signs/symptoms/tests), but by excluding all other possible diseases/disorders. The article even provides an example of this procedure: the CDC guidelines ("eliminate A,B,C,D,E,F,G,H,I,J, then eliminate every other disease known to modern medicine, then diagnose the patient with CFS").
Lastly, the article shouldn't mention specific early theories/treatments that are very far from widespread acceptance as if they're standard, especially not in an introduction that otherwise says "nothing is clear, everything is disputed, even the name":
-- bornLoser ( talk) 11:16, 23 March 2016 (UTC)
* Many parts of the article are unclear, contradictory, and/or confusing to laymen (who aren't used to navigating such hotly disputed ground in medicine).
*I'd guess that editors may be too focused on POV/NPOV and end up adding content in parallel instead of thinking as authors/editors. If some statement seems unacceptably "biased", the correct response isn't to add a statement after that appears equally biased in the opposite direction. This isn't physics: they don't cancel each other out, they leave the reader confused and unsatisfied (or worse, convinced that one "side" has to be "right"). If there is no consensus among experts (or contradictory/insufficient evidence, etc) on some point, the article should just say that outright.
*There's also a little too much defensiveness and victim's-advocacy-style statements (eg "this is a real disease, please don't joke about it", "these people suffer a lot, please don't make fun of them"), such as: • "Quality of life of persons with CFS can be extremely compromised." • "CFS affects a person's functional status and well-being more than major medical conditions such as multiple sclerosis, congestive heart failure, or type II diabetes mellitus" :This kind of stuff isn't particularly helpful or informative, should likely be stripped since it's dead weight for the article.
*Lastly, the article shouldn't mention specific early theories/treatments that are very far from widespread acceptance as if they're standard, especially not in an introduction that otherwise says "nothing is clear, everything is disputed, even the name": • "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases. The medication rintatolimod may be useful for certain people." (as far as I know, CBT isn't specifically effective (ie it's only as effective for CFS as it is for any other disease, like placebo) and rintatolimod was denied approval for lack of efficacy)
Discussion above has suggested some of the current article content and levels of what could be called overloading is not helpful to the lay person's understanding of CFS. As an attempt at approaching these problems I'm proposing the following as suitable for pruning:
-- In Vitro Infidelium ( talk) 15:09, 3 April 2016 (UTC)
Deletions made 10th April. -- In Vitro Infidelium ( talk) 12:18, 10 April 2016 (UTC)
This content "Studies do not however show an improvement based on objective measures [1]." is supported by an non pubmed indexed review as the journal has only existed for a few months. [1]
This is primary sources ". A phase II double-blinded placebo-controlled study published in 2011 showed that 10 out of 15 patients experienced a moderate or major improvement from the drug Rituximab, compared to 2 out of 15 in the placebo group. [2] A phase III follow-up study with 152 patients is ongoing in Norway. [3] The study will be published in 2018." Doc James ( talk · contribs · email) 14:28, 17 April 2016 (UTC)
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Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf and A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): http://www.ncbi.nlm.nih.gov/pubmed/19855350 were used as sources for two recent additions to the management section. The Bulletin of the IACFS/ME appears not to be peer reviewed, although personally I think Tom Kindlon's work is wholly valid the publication doesn't seem to meet the test of MEDRS - note the URL given in the recent edit was wrong - above is correct. If anyone has a sound argument for support of the Bulletin as MEDRS then I would support use of Kindlon in the Management section. Twisk (not Twist) and Maes is more problematic because although described as a 'review' it does not meet the the standard of MEDRS - quote from abstract: In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. -- In Vitro Infidelium ( talk) 09:25, 27 April 2016 (UTC)
CFS and CFS controversy articles appear in the WP category medical controversies – there is no other somatic disease amongst those listed with the exception of Lyme Disease which is included because of the controversy related to the doubtful diagnosis of ‘chronic lyme’. There are no MDRS that support the categorisation of CFS as a ‘medical controversy’. The are a number of issues about CFS which have been historically controversial but to the extent that these have any relevance, they can/are/should be dealt with in the main article history section. As it stands the current controversies section is a wastebin category of largely irrelevant material. I propose to change the section to Media Controversies with the following text:
Media Controversy
Media treatment of CFS has been controversial. In November 1990 the magazine Newsweek ran a cover story on CFS which although supportive of an organic cause of the illness also featured the term Yuppie Flu. Reflecting a stereotype that CFS mainly affected yuppies, the implication was that CFS was a form of burnout. [1] Use of the term Yuppie flu is considered offensive both by patients and clinicians [2] [3] Books which cast CFS as being either a social construct or wholly psychiatric in origin have added to the media presentation of CFS as a controversial issue. [4] [5]The mistaken linking of CFS with the XMRV retrovirus was widely reported in the news media, with particular attention being given to the issue of blood donation. [6] [7]
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Once this edit is completed I also propose to redirect the Controversies sub article to the new section. As previously discussed the Controversies sub article is beyond salvation and has been tagged since 2008 without any substantial improvement.-- In Vitro Infidelium ( talk) 12:43, 6 April 2016 (UTC)
Clear all the false positives and we are left with non MEDRS or just unsupported statement/opinion from psychiatrists/psychologist dominated publications. One can't have controversy where just one section of the disputing population claims controversy exists - and provides no evidence for where the controversy lies - is it diagnosis, is it on the limitation of management/treatment options, is it on the absence of identified pathology ? -- In Vitro Infidelium ( talk) 09:38, 27 April 2016 (UTC)
There is good evidence now that, at least in some individuals, CFS involves dysfunction at the mitochondrial level in the recycling of ATP-ADP. Please add mention of that fact to the discussion of etiology here. (I am not an expert, or I would undertake the task myself.)
Thanks KC 00:19, 28 May 2016 (UTC)
KC 00:19, 28 May 2016 (UTC) — Preceding
unsigned comment added by
Boydstra (
talk •
contribs)
The material on the 'British situation' has undue weight in terms of it's presence on this page that does nothing to improve understanding of the illness, while the symptoms section is little more than a list and very hard to read. This should be moved into the Controversies page. Leaving it here creates a fork lacking balance and lacks a Neutral point of view WP:NPOV.
It also needs to be much more 'Journalistically sound' by properly drawing together the full impact of those targeted and the limited extent of that activity. — Preceding unsigned comment added by Leopardtail ( talk • contribs) 12:57, 11 May 2014 (UTC)
Could mention "Chronic fatigue syndrome is in your gut, not your head" (Cornell University, June 27, 2016, Science News, sciencedaily.com) Says "Now, for the first time, researchers report they have identified biological markers of the disease in gut bacteria and inflammatory microbial agents in the blood." - Rod57 ( talk) 12:15, 7 July 2016 (UTC)
The pathophysiology section is not the place to speculate about causes or patient beliefs. It's the place where you describe the things that have been documented to be wrong in patients bodies. I have made an edit to remove the inappropriate paragraph by sciencewatcher. — Preceding unsigned comment added by Abmayer ( talk • contribs) 19:07, 7 July 2016 (UTC)
As I'm writing this, sciencewatcher has reverted my edit, with the justification "just because you disagree with it doesn't make it "off-topic". This dispute is easily solved by consulting a dictionary:
The Medical Dictionary for the Health Professions and Nursing defines pathophysiology as 1. The study of structural and functional changes in tissue and organs that lead to disease. 2. Derangement of function seen in disease; alteration in function as distinguished from structural defects. http://medical-dictionary.thefreedictionary.com/pathophysiology
Clearly, it's not "just me". A paragraph that deals with patient beliefs about their illness is severely off topic in the pathophysiology section. I'm going to remove the paragraph again. Please accept that this is not the right place for this information. Abmayer ( talk) 20:31, 7 July 2016 (UTC)
References
This study appears to be significant and has found a pattern of metabolic abnormalities in CFS patients http://www.pnas.org/content/early/2016/08/24/1607571113.full The Open Medicine Foundation (that funded the work) announced in July a replication study was underway http://www.openmedicinefoundation.org/2016/07/06/metabolomic-and-chronic-fatigue-syndrome-robert-naviaux-md/ Most media coverage has been of very poor quality, but this article is perhaps the best http://www.economist.com/news/science-and-technology/21706241-new-test-may-diagnose-mysterious-illness-and-also-help-explain-it-blood The Open Medicine Foundation is a very small CFS research initiative but punching well above its weight - its scientific advisory board has three Nobel laureates and six National Academy of Science members http://www.openmedicinefoundation.org/scientific-advisory-board/ It is led by Stanford's Ronald W. Davis (whose son is very sick with CFS) /info/en/?search=Ronald_W._Davis
I do not know the Wikipedia rules (so have not edited the main page) and am not sure if study replication is required or any other bars met for study quality or size, but even if this is not appropriate to be included now, it seems useful to post in this talk page as probably in time this topic of metabolic defects will become something the page should cover, especially given the common symptom of post exertional malaise where patients get much sicker after minimal exertion, and what Mark VanNess has found to be a totally broken aerobic metabolism than cannot be trained. Where we have good sources, this sort of information is crucial because it gets right to the core of why patients are so infuriated by exercise therapies (patients surveys typically show high levels of dissatisfaction and claims of harm from these treatments). Kicsinyul ( talk) 07:59, 5 September 2016 (UTC)
The addendum is talking about CDC vs Oxford criteria, so the addition to the article isn't quite correct. Can the OP please fix? -- sciencewatcher ( talk) 03:15, 20 August 2016 (UTC)
Also, it should go into the treatment article, and you should give a proper summary of their conclusions on CBT and GET. -- sciencewatcher ( talk) 04:08, 20 August 2016 (UTC)
Thank you
sciencewatcher
I am currently unable to make edits so please feel free to make whatever amendments / deletions you require to my contribution on this subject
C7762 ( talk) 18:07, 20 August 2016 (UTC)
The AHRQ noted that the evidence base on CBT and GET depends heavily on studies that use the Oxford case definition of CFS, which only requires the symptom prolonged fatigue to qualify for a diagnosis of CFS. The AHRQ describes the Oxford case definition as the least specific case definition, with high risk of including patients that have a different illness, or an illness that resolves spontaneously over time. The purpose of the addendum was to assess the impact of the Oxford case definition on the conclusions, and to assess the impact of separating studies of CBT from other counseling and behavioural interventions. Table 5 and 7 show the change in strength of evidence. When Oxford case definition studies are excluded, there is insufficient evidence that GET results in improvement on any outcome (these being function, fatigue, employment, quality of life, global improvement). With CBT, low strength of evidence for improved function is downgraded to insufficient evidence, and low strength of evidence for global improvement is downgraded to insufficient evidence, strength of evidence regarding employment remains insufficient, strength of evidence on fatigue remains low, strength of evidence that CBT does not improve quality of life remains low. Abmayer ( talk) 17:50, 23 August 2016 (UTC)
As far as I know, the Oxford case definition is not actually used by any health agency or in clinical practice. It's a case definition used by some researchers that view CFS as being equivalent to symptom prolonged fatigue, but that's not how the rest of the world has defined CFS. I don't see any misrepresentation of the source material here. On the contrary, this addendum shows that if anything the misrepresentation lies in citing Oxford case definition based material as if it broadly applied to CFS patients when said patients are typically diagnosed with the CDC case definition. Abmayer ( talk) 17:49, 23 August 2016 (UTC)
Hi - I have removed my edit until I or someone else can put together a bit more which covers it in more detail and hopefully a consensus can be reached. The whole reason for the AHRQ addendum is that the validity Oxford criteria is being questioned by AHRQ and several US government agencies which is the background context this edit needs.
Thank you C7762 ( talk) 18:35, 23 August 2016 (UTC)
Link to the report. The addendum is in the beginning. [1] Abmayer ( talk) 15:15, 24 August 2016 (UTC)
Thanks Abmayer , I add reference to executive summary [2] of a symposim? by the National Institutes of Health in 2015 that concluded that "continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery. "
The AHRQ then performed the re-analysis and addendum.
C7762 (
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18:30, 24 August 2016 (UTC)
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Thank you
Aspro for your input. From my point of view it is important to record the 'historical' facts on this matter using references to sources that carry weight and give balance to all viewpoints. The "Wessely" hypothesis/theories are currently being applied to research in fatigue in :- Cancer, end stage kidney failure, multiple sclerosis and stoke patients so it is also relevant going forward. - "What's past is prologue" - I look forward to your further input. Thanks
C7762 (
talk)
08:56, 10 September 2016 (UTC)
The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo: The 5 million pound PACE Trial tested the model that the main maintaining factors for symptoms and disability in CFS are the patients beliefs and physical de-conditioning.
On the 16th September 2016 Queen Mary University London released the analysis of improvement for the trial according to the original protocol (they have not released the Recovery figures according to original protocol) showing that CBT & GET did not result in the Lancet article improvement rate of ~60% but ~20%. The improvement rate for doing nothing was 10%. The 10 point point difference could easily be caused by the reported weaknesses and biases in the study. From this we can read that the trial failed to prove that CBT and/or GET are helpful in improving CFS and therefore failed to prove the underlying model. I am looking forward to hearing others views on this but my feeling is that this section will need to be altered drastically and possibly the psychosocial model for CFS put in an historical context. On the 17th September 2016 QMUL released anonymised trial data under a FOI request as ordered to by a first-tier tribunal. Independent analysis is expect shortly. Thanks. C7762 ( talk) 11:39, 12 September 2016 (UTC)
Please find references for above
PACE Trial CBT treatment manual (page 18) [1]
PACE Trial GET treatment manual (page 20) [2]
Links to Statement of release of data and to Re-analysis according to original protocol available on this page http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#news
Additional reading:-
QMUL's defence of criticisms of PACE trial [3]
Critique of PACE trial [4]
thanks C7762 ( talk) 08:16, 13 September 2016 (UTC)
References
Analysis (of PACE trial data according to original protocol) of Recovery rates for Graded Exercise Therapy and CBT reveals no statistical significance over specialist medical care. The Lancet article
[1] reported recovery rates of 22% for both GET and CBT - this was based on a mid-trial revised protocol where "13% of participants at baseline simultaneously met the trial eligibility criteria for ‘significant disability’ and the revised recovery criteria for normal self-reported physical function"
[2]
[3]. Where as analysis according to the original protocol reveals recovery rates of 7% (CBT) & 4%(GET) with no statistical significance over 3%(SMC).
[4]
[5]
[6]. Thanks
C7762 (
talk)
09:59, 24 September 2016 (UTC)
In response the PACE trial Authors argue against open trial data [7]. C7762 ( talk) 10:45, 24 September 2016 (UTC)
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The UK First Tier Tribunal has decided that Queen Mary University London should make PACE trial data available to Mr Matthees, who requested it under the freedom of information act [1]. The tribunal decision contains some interesting information that might be relevant to the CFS page or some sub page.
During the hearing, Prof. Chalder admitted that no threats have been made against researchers. Back in 2011 newspapers reported that researchers were facing death threats by militants for conducting psychological research into CFS.
She also admitted that a Cochrane review of exercise therapy for CFS was not independent since PACE trial authors were on the review panel.
The tribunal further concluded that there was no evidence of an organized campaign of harassment against researchers or PACE trial participants.
Abmayer ( talk) 16:45, 16 August 2016 (UTC)
References
It is significant enough for the BMJ
[1] to have an article about the Judgement and the online version of "The i" newspaper (formerly part of the Independent group) has an article
[2] on the tribunal judgement that supports the proposed edit by
Abmayer (
talk).This can be considered a reliable secondary source, its editor is
Oliver Duff and the reporter is
Paul Gallagher.
It is also relevant to this section as
1. The eventual release of the data as ordered by the court will allow independent scrutiny of the trial to accept or reject the findings and conclusions of the Pace Researchers. This will once and for all put an end to the Pace trial controversy. I know the Cochrane review is often cited as independent but one of the senior Pace researchers stated in her evidence to the court that in her opinion it was not. Whether it is or not - there is still the perception that it is not independent and this adds to the controversy.
2. the Pace researchers had the opportunity to provide evidence to the court about the harassment (it was part of their defence for not releasing the data) and the court found there was no evidence except for a bit heckling. JFW you argue there is evidence of harassment - please provide references to evidence that the Pace legal team and witnesses did not have access to when presenting the case to the court.
I suggest the following 1st draft :-
Judgement in a First-tier Tribunal (20-22 April 2016) where PACE trial researchers had the chance to present evidence use expert witnesses and be cross examined stated "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder". [3] [4] Judgement in this case ordered the release of the PACE trial anonymised data under the Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial". Approximately £200,000 was spent on legal fees for this appeal by the appellant to try to prevent the release of the anonymised data. [5]. The appellant Queen Mary University London issued a press statement [6] stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community."
a bit need to be added about the main argument for not releasing the data that it was not anonymised enough which the court threw out.
Thanks for considering my input.
C7762 ( talk) 18:22, 23 August 2016 (UTC)
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@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo:
Hi,
Below is my final draft -I have tried to be concise and balanced in the post. I hope that there will be feedback on its content and also layout and a concensus will be reached. When consensus is reached or if I have had no input by the 20 September 2016 (implied consensus) I will post. It is relevant in several pages that talk about the Pace trial and CFS controversies I would like some feed back on where I should post it and where links to it should be posted - otherwise I presume it should be put on 2 or 3 different pages. I hope for your feedback so I we can get the edit right.
Judgement in a
First-tier Tribunal (20-22 April 2016) ordered the release of the PACE trial anonymised data under the
Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial".
[1]
[2].The Tribunal rejected the appellant Queen Mary University London claims that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college.
[3]. The tribunal found by a majority that the data “has been anonymised to the extent that the risk of identification is remote.”.
PACE trial Researchers had the chance to present evidence use expert witnesses and be cross examined also argued that their was extremist activists in the CFS community, the Tribunal judged "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder".
[4] Queen Mary University London issued a press statement
[5] stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community.". Alem Matthees the second respondent in the case is quoted as saying "This case ended up costing me greatly in time, energy, and health (currently bedridden) … but false or misleading claims of recovery or remission from debilitating illness simply have no place in the scientific literature.”
[6]
The following may or may not be worth adding (comments please):-
Approximately £200,000 was spent on legal fees for this appeal by the appellant to try to prevent the release of the anonymised data. [7].
Jo Edwards,Professor emeritus, UCL said "If scientific interpretation is poor it deserves no protection. If it is good it needs none." [8]
Although part of judgement was a majority of 2 to 1. The verdict as a whole was unanimous.
QMUL argued that they did provide data to other researchers "The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent, and that their data is only shared under obligations of strict confidentiality." "QMUL’s appeal against the Information Commissioner argued in favour of controlled and confidential access to patient data from the PACE trial. QMUL has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis."
But in evidence they also argued that the researchers they provided the data to were not independent. and the court ruled that if they had provided the data to other researcher they would have been in breach of data protect laws.
Thanks - and looking forward to constructive feedback.
C7762 ( talk) 00:03, 1 September 2016 (UTC)
The text looks fine to me. I think it is valuable to link to the February letter from (I think 43) scientists to the Lancet asking for an independent review of the PACE trial data, including academics from Stanford, UCL, DePaul, Berkeley and Columbia. This letter was referred to in the tribunal decision which stated "The identity of those questioning the research, who had signed an open letter or supported it, was impressive". http://www.virology.ws/2016/02/10/open-letter-lancet-again/ (interestingly since sending it to the Lancet, editor Richard Horton offered to publish a letter from the scientists, they wrote one and submitted it to the Lancet, the editor then rejected it - I suspect eventually there may be a page needed for the PACE study itself as events around this trial go beyond CFS research). Note Jo Edwards full name is Jonathan Edwards. I think the cost of the tribunal defence should be included as we know it is true (they confirmed the cost) and it speaks directly to the strong motivation of the university to not allow release of the trials data. The tribunal ruling is mentioned in The Times here (paywalled) http://www.thetimes.co.uk/article/chronic-fatigue-syndrome-could-be-the-body-trying-to-hibernate-3fzp2zgxv with a full-text version visible here http://www.meassociation.org.uk/2016/08/chronic-fatigue-syndrome-could-be-the-body-trying-to-hibernate-the-times-30-august-2016/ Kicsinyul ( talk) 06:44, 3 September 2016 (UTC)
Thanks Kicsinyul for your comments.
I agree the letter should be incorporated within the context of "The identity of those questioning the research, who had signed an open letter or supported it, was impressive" ... "that strong public interest in releasing the data given the continued academic interests" which was given significant weight in the judgement. Strong Public and Academic interest is also reported in the secondary sources.
I also agree that cost of over £200,000 is significant and signifies 'the strong motivation' of withholding the data. Again this is reported in the secondary sources.
An interesting juxtaposition to the £200,000 is that previously QMUL turned down a FOI (not for the actual data) but for a re-analysis of the data according to the original specification on the grounds that it would cost more than £450. My current thinking that this £450 is not part of the core information - any thoughts any one?
Kicsinyul I will update the proposed entry with your suggestions and put it here before I post it.
Is there any other primary or secondary sources for any additional response from QMUL, the PACE trial or the Lancet that I have missed and is felt would be appropriate to incorporate. The judgement and secondary reporting is pretty damning , it is hard to find anything to include in the post in QMUL's favour?
C7762 ( talk) 17:55, 3 September 2016 (UTC)
Kicsinyul I'm not aware of any response from the Lancet, or anything from QMUL apart from their press release that you refer to - the investigators and their allies have been oddly silent. However I am told this official PACE FAQ page has been updated recently, and it does provide responses to some of the criticisms of the trial http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#faq (the fact it has been updated recently is not evident from the page, but it is a primary source for responses to at least some trial criticisms). The Lancet editor Richard Horton asked the open letter signatories (asking for independent re-evaluation of PACE) to write a short letter to be published in the Lancet, alongside a response from the PACE trial authors. The open letter signatories did that, and the Lancet then (bizarrely) rejected it without explanation http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Kicsinyul ( talk) 07:37, 5 September 2016 (UTC)
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Please See Talk:Chronic_fatigue_syndrome#update for latest. Thanks C7762 ( talk) 10:01, 24 September 2016 (UTC)
Talk:Chronic_fatigue_syndrome/Archive_19#Robert_Naviaux_et_al_.22Metabolic_features_of_chronic_fatigue_syndrome.22 was only added in September 2016 and it seems a shame to archive it (and hide it) so soon before others can see and comment on it. Would anyone object to the comment being copied into this live talk page so we can continue to comment on it ? - Rod57 ( talk) 13:50, 28 September 2016 (UTC)
@Jytdog there is quite a lot of secondary sources related to this, It was my intention to provide them for scrutiny but every thing takes time and auto archiving in 3 weeks does not provide a lot of time. Thanks C7762 ( talk) —Preceding undated comment added 15:25, 28 September 2016 (UTC)
The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18]
-- Wilshica ( talk) 04:33, 12 October 2016 (UTC)Wilshica
I was tempted to add, under 'Research', a mention of an article headed "Metabolic features of chronic fatigue syndrome", published in PNAS. Then I noticed that it is quite recent (I just checked and it's the current edition of PNAS), so perhaps I should hold off till there are some published reactions? Any thoughts?
Article is at: http://www.pnas.org/content/113/37/E5472.short?rss=1&ssource=mfr Wayne 05:46, 24 October 2016 (UTC)
@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo: @ Doc James: @ Kicsinyul: @ Bluerasberry: @ CFCF: @ Davidcarroll: @ Esh77: @ FlyingVolvo: @ Harej: @ Jyotirmay: @ Maji: @ Keilana Laatu: @ McortNGHH: @ Rytyho usa: @ ShelleyAdams: @ Volshe: @ WhatamIdoing: Hi @Jfdwolff I am confused :- Why have you closed PACE trial tribunal ruling (QMUL v the IC and Matthees) and the PACE trial Update discussion. You say it is not a buliten board - both sections are for proposed changes. The PACE trial tribunal ruling (QMUL v the IC and Matthees) had no negative feedback on my proposed edit for 28 Days so consensus is implied and I will be making the edit in the near future. The PACE trial Update explicitly seeks to build a long term consensus on the subject so changes can be made. It appears to me that you are trying to close down the process of discussion and consensus building - this page covers a contentious issue and consensus building and discussion are important in ensuring it provides correct balanced information. You have also manually achieved Talk:Chronic_fatigue_syndrome_treatment which had a proposed edit (which referenced the NICE guidelines) which I asked for your help with. I have tried to follow your advice so please answer me so I can understand? I also welcome anyone else's point of view. C7762 ( talk) 10:00, 28 September 2016 (UTC)
Thanks @Bluerasberry, There are two separate discussions that have been closed, both related to the PACE trial. The £5M trial has significant influence on national health treatment guidelines.
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Thanks @Jytdog, (please see above) - I can see that it might appear that my input about the analysis of the pace trial data was an update but it was an opening of a debate. If this is not appropriate then no problem but I would appreciate a post stating why there should be no debate rather than just closing it down. My specific proposed edit to the Chronic_fatigue_syndrome#Controversy section has been there for 28 days with out any arguments against so I presume there are no objections. I am new to editing so all advice is welcome. Thanks C7762 ( talk) 15:22, 28 September 2016 (UTC)
@Jytdog, I would also like to remind you that I originally posted the PACE trail Analysis under a discussion about Pathophysiology on this page (as I believed it was relevant) and it was yourself that sub sectioned it with the title Update. Thanks C7762 ( talk) 15:49, 28 September 2016 (UTC)
Thanks @Bluerasberry, @Jytdog for your constructive input I take your points on board about discussions, edit suggestions and brevity e.t.c. I'm not going to push the PACE trial verdict (which was to be under Controversies section ) but I would say The PACE trial has had highly significant influence on the international perception of CFS and treatment guidelines in the UK,Europe, US, Austraila and further afield and the campaign to get the underlying data released was international including 42 international scientists and clinicians [1] and the subsequent analysis [2] [3] [4]. of the court ordered released data calls into question the published results and conclusions and associated treatment guidelines (CBT & GET) [5]. But obviously this is not time (and maybe not the place) so I will let it drop. Thanks C7762 ( talk) 21:19, 28 September 2016 (UTC)
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The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18]
--Wilshica (talk) 04:33, 12 October 2016 (UTC)Wilshica — Preceding unsigned comment added by Wilshica ( talk • contribs)
I have replaced the text in this new section with the previous text about the HPA axis (which was deleted by IVI earlier this year). There was some discussion about restoring this section at the time, but it never happened. -- sciencewatcher ( talk) 17:13, 16 November 2016 (UTC)
Is this source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ A reliable source? Everything seems to check out but something doesn't feel right. The journal "International Journal of Clinical and Experimental Medicine" has been controversial, and research for "ATP profile tests" don't come up with much. — Preceding unsigned comment added by Petergstrom ( talk • contribs) 07:14, 18 November 2016 (UTC)
Could you send that study to me? Petergstrom ( talk) 16:11, 18 November 2016 (UTC)
The article currently claims that:
The former statement is doubtful, at best; I am not an expert, but have read that the main evidence for graded exercise therapy has been the PACE trial, and the methods and interpretation have been challenged. The latter statement is false as written, since chronic fatigue syndrome often involves post-exertional malaise. (See the symptom list.) 96.255.9.115 ( talk) 04:32, 21 November 2016 (UTC)
Some of the challenges, this year, include:
27.33.143.13 ( talk) 01:43, 23 November 2016 (UTC)
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I am bumping this from the archived talk pages - some editors would like to discuss further before any change is implemented.
The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18] -- Wilshica ( talk) 05:07, 25 November 2016 (UTC)
The section on psychological factors has a very different tone to the other sections on possible causes. These other sections cite evidence for their respective causal factors. This section states outright: "Current data suggests that genetic, physiological and psychological factors work together to precipitate and perpetuate the illness. [1]" This is a speculation that goes well beyond the data. It is not yet clear on the current evidence that all of these factors "work together to precipitate and perpetuate the illness".
This section should cite any relevant evidence supporting psychological causal factors in the development and/or maintenance of CFS, without making any sweeping assertions as to causation.
Do others agree?
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-- Wilshica ( talk) 23:30, 21 November 2016 (UTC)wilshica
Given the uncertainty and controversy in this field, we do need to keep evidence and claims separate. What we need to do here is describe the science, not the theories (there are other sections for that). — Preceding unsigned comment added by Wilshica ( talk • contribs) 01:30, 23 November 2016 (UTC)
How about this for the "Psychological" subhead? It sticks to the evidence, and doesn't make any sweeping claims (the last version also made an implicit assumption that correlation=causation, I have made the causal reasoning explicit):
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0098156
Although this is not a secondary source, decreased BG activity has been found in patients without pathological fatigue. Is this something that can be added? Petergstrom ( talk) 21:09, 1 December 2016 (UTC)
These are all the sources I could find. https://www.ncbi.nlm.nih.gov/pubmed/24858857, http://www.nature.com/articles/srep21386, http://www.fasebj.org/content/26/1_Supplement/1035.20, http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-4-14. The second one is on general fatigue not CFS. Petergstrom ( talk) 03:12, 8 December 2016 (UTC)
The following was added here on Dec 5; contested today due to the source here and here, and i removed it here and want to discuss it. Here it is:
The HPA axis dysfunction may be due to oxidative and nitrosative stress and inflammation [1]
References
First the source is fine, a recent review in a high quality journal. What I am struggling with is the content. The conclusion of this paper is that "The stress crash theory that HPA axis hypofunction drives the activation of immune-inflammatory pathways in ME/CFS cannot be validated. This theory is contradicted by a number of findings, including (a) HPA axis hypofunction is only present in a subgroup of patients, (b) there are no changes in HPA axis during the early stages of ME/CFS, and (c) the immunosuppressive effects of GCs are enhanced in ME/CFS." and it goes on from there.
User: Petergstrom we have talked over-simplification in the past, and it is not valid - based on this source you brought, as well as a bunch of others - that there are no super-clear diagnostic criteria or common signs across everyone with the CFS. This is messy and you cannot write stuff like "The HPA axis dysfunction may be due to...." as though HPA hypofunction is a definitive hallmark of the condition as it is currently understood. I am going to add this back with nuance. Jytdog ( talk) 01:26, 11 December 2016 (UTC)
I am raising this comment from an unidentified WP editor to its own seciton
The citation for the claim "Exercise does not make people worse." Is invalid. The Cochrane review states "no evidence suggests that exercise therapy may worsen outcomes" - this is not the same as exercise in general. Secondly, none of the articles reviewed by the Cochrane study used objective measures of activity/exercise. We literally have no evidence whether patients actually increased their activity levels, or simply substituted one type of activity (daily chores etc) for another. See: Does graded activity increase activity? A case study of chronic fatigue syndrome. Friedburg, Journal of Behavior Therapy and Experimental Psychiatry 33(3-4):203-15 · September 2002. Secondly, the quality of harms reporting in clinical trials of graded exercise therapy has been reported as poor and does not meet the same standards of contemporary drug trials. Lastly, short term harms of exercise have been consistently reported, "Influence of exhaustive treadmill exercise on cognitive functioning in chronic fatigue syndrome" "Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome" "Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome" etc. Therefore The claim "Exercise does not make people worse" is not consistent with the current published body of evidence and needs to be removed from the article.
27.33.143.13 (talk) 01:43, 23 November 2016 (UTC)
Its perhaps not fair to say that this claim is invalid (it has some empirical basis), but I do agree that we should be cautious more when commenting on possible adverse/side effects of treatments. And behavioural treatments should be no exception. As the editor above noted, exercise physiology studies show that some patients can have an adverse reaction to intense exertion, at least over the short term. Informal patients surveys also report a high incidence of adverse effects from exercise programmes in general (and these sorts of reports are part of any consideration of treatment adverse/side effects). [1] A more cautious phrasing would be preferred. The suggested edit looks acceptable to me.
References
-- Wilshica ( talk) 02:06, 23 November 2016 (UTC)
The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
We have a June 2016 Cochrane review that states " Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes."
As this is an important point I propose we add "Exercise therapy does not appear to make people worse." to the third paragraph of the lead.
Other wording could include "There is no evidence of harm from exercise." Doc James ( talk · contribs · email) 05:01, 26 November 2016 (UTC)
"In a systematic review of exercise therapy, no evidence of serious adverse effects was found, however data was insufficient to form a conclusion." The Cochrane review explicitly stated they could not form a conclusion on adverse effects, so a point along those lines needs to be stated. Arch ( talk) 04:28, 27 November 2016 (UTC)
Option 2 lacks clarity. It is dishonest to imply something is safe due to "no evidence", when that means lack of evidence. It would be much more accurate to say "Evidence is currently lacking on whether exercise (or exercise therapy) leads to harm". Arch ( talk) 07:06, 26 November 2016 (UTC)
Strongly oppose: Cochrane reviews may be of high quality, yet one has to judge and place them into context to gain any benefit from them. The review is of studies where the cohort had be selected from the umbrella term that covers CFS in all its manifestations. Not to put to finer point on it, five out of those eight used the used the Oxford Criteria. Hardly a random CFS cohort! Therefore, to promote these inclusions in this article (as if it was a matter of fact) is a bit like saying that “ A Cochrane review found that a few patients selected for a certain type of cancer benefited from a ce'rtain type of chemotherapy and thus all cancer patents will suffer no harm at all from this type of treatment”. The supporting review provided - even states - that "Serious adverse reactions were rare” I.e. not totally absent. Although some editors may have enough medical degrees to get a job as a clinical thermometer they appear to be ignorant of the science concerning aetiology and the work that gets done to find the best treatments. So the sentence proposed can not stand as worthy of inclusion in this article. -- Aspro ( talk) 12:37, 26 November 2016 (UTC)
"Do not reject a high-quality type of study (e.g., a meta-analysis) ... because of personal objections to the inclusion criteria, references, funding sources, or conclusions in the higher-level source."We can make judgements about what type of review it is, but Wikipedia editors are not qualified to critique the details of a systematic review to advance their own point-of-view as you're doing. Criticism of a secondary source is valid when published in an equally authoritative publication, but not just on the say-so of a Wikipedia editor. If you have found an authoritative published refutation of the Cochrane review, then by all means, refer to it. Otherwise, your self-produced analysis carries no weight here. -- RexxS ( talk) 22:59, 26 November 2016 (UTC)
Oppose either misleading summary - I think it's important people read the review before deciding on this, including the comments from Tom Kindlon and Robert Courtney, and the author's response. Ideally people would be aware of the public exchange between James Coyne and David Tovey too. Other than with the PACE trial, reporting of harms has been recognised as being generally poor for exercise trials of CFS: https://www.ncbi.nlm.nih.gov/pubmed/26112761 Considering the current controversy surrounding the PACE trial (the studies authors recently losing a court case in which they had argued that Cochrane's review of their data was not independent as they themselves had been involved in the process, so still had control) it seems odd to place such a bold statement founded on this trial so prominently, eg: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial The Cochrane review only looked at outcomes for RCTs, so any summary of its findings must recognise this, particularly given the negative reports seen from patients receiving exercise therapy and the research seeming to indicate abnormal responses to exercise. A lack of evidence of harm from one type of evidence is not the same as there being no evidence of harm. I don't know much about wikipedia, and was told about discussion by someone using it as an example of how wikipedia's rules seem to actively discourage critical thinking. This Cochrane review classed the PACE trial as having a low risk of selective reporting - a judgement by the authors that always seemed to defy Cochrane's own guidelines, and one that has now been left looking absurd following the partial release of data from the trial. — Preceding unsigned comment added by 146.90.86.66 ( talk) 03:36, 27 November 2016 (UTC)
Neutrality requires that each article or other page in the mainspace fairly represent all significant viewpoints that have been published by reliable sources, in proportion to the prominence of each viewpoint in the published, reliable sources." That means that the Cochran review's viewpoint on ET worsening outcomes will be reported along with any other equally authoritative sources that have a view on the issue. It does not mean that a bunch of anonymous editors can decide that they don't like the way a review was conducted and can exclude it. That's not critical thinking, that's a recipe for anarchy and POV-pushing. Wikipedia does indeed discourage editors thinking that their analysis of data supersedes that of reliable sources. An expert here is defined as somebody who knows what the best sources are. So, please check the review you adduce: as far as I can see, Marques et al, 2015 looks at the effectiveness of different interventions and says nothing conclusive about harms as you seem to think. If you believe the proposed summaries are misleading, then please explain how we should be summarising a conclusion that states "no evidence suggests that exercise therapy may worsen outcomes". If you are asserting that the conclusions of the Cochrane review are misleading, then name for us the equally reliable source which states that those conclusions are misleading. If you haven't grasped WP:No original research yet, that means we go by what reliable secondary sources tells us, not what amateur analysis by editors might come up with. -- RexxS ( talk) 04:37, 27 November 2016 (UTC)
Oppose I do not think any of the proposed edits should be included in the lead, although the material being discussed seems be worth covering, at some greater length, in the section on Exercise therapy. Compare this discussion with the article on Major depressive disorder, where the lead briefly mentions treatments, including medication and electro-convulsive therapy, without needing to state that there is 'no evidence of harm', or similar.
Wayne
14:49, 5 December 2016 (UTC)
It is unclear whether medications affect the risk of suicide", and six references. Your assertion that "the lead briefly mentions treatments" is simply untrue, and the lead does state where there is no evidence of a possible harm as a result of treatment. Were you thinking of a different article? -- RexxS ( talk) 18:18, 5 December 2016 (UTC)
where the lead briefly mentions treatments", according to you. That article devotes six sentences and six references to treatments; this article devotes two sentences and two references to treatments. You oppose expanding the content on treatments in the lead of this article. It expect the closer to give your reasoning the weight it deserves. -- RexxS ( talk) 00:18, 6 December 2016 (UTC)
I remember reading a bit about this some months ago, when the activists were outraged at the recommendation. My (possibly faulty) impression was that it's a bit more complicated than that:
So with these thoughts in mind, I'm slightly concerned about the statement that "it doesn't make people worse". I wouldn't insist that this one sentence explain everything, though, as this is a bit more than the lead should handle. But perhaps a different phrasing would be more precise. WhatamIdoing ( talk) 06:23, 26 November 2016 (UTC)
Both supporting options are unacceptable. Option 2 is even worse than the original Option 1.
Cherry picking poorly evidenced statements from a systematic review while ignoring the context given in the same source is not consistent with WP:MEDRS. Misinformed content in relatively high profile articles also puts the health of patients at risk. But a limitation of WP:MEDRS is that it does tend to encourage a blind adherence to Cochrane reviews, which is a serious issue when such reviews can merely reflect the biases inherent in the primary studies. Experts such as John Ioannidis are concerned that "evidence-based medicine has been hijacked" and Cochrane reviews "may cause harm by giving credibility to biased studies of vested interests through otherwise respected systematic reviews" [10]. Figure 2 of the Cochrane review of exercise for CFS documents the high risk of bias in exercise studies. James Coyne has expressed concerns about conflicts of interest present in the Cochrane review in question [11].
The Cochrane review in question [12] is specifically referring to serious adverse events (e.g. hospitalisation and death), and the evidence is poor because most trials did not record adverse events in general and when they did it was not reported adequately. The Cochrane review itself states that "sparse data made it impossible for review authors to draw conclusions". In the NIH P2P systematic review is a similar conclusion: "Harms were rarely reported across studies (insufficient evidence)." [13] Older reviews make similar statements. It is negligent to omit this context when placing a questionable and controversial statement at the top of the Wikipedia article: "Exercise therapy does not appear to make people worse." The proposed alternative is worse: "There is no evidence of harm from exercise."
WP:MEDRS states that reports from US government agencies such as the Agency for Healthcare Research and Quality provide trustworthy mainstream views for health content on Wikipedia. This is what a recent AHRQ report (Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has to say about the current subject [14]: "Harms were not well reported, although in one trial patients receiving GET reported more adverse events compared with those receiving cognitive behavior therapy (CBT), adaptive pacing, or usual care; one trial reported more withdrawals of patients receiving GET, one trial had a high percentage of patients refusing repeat exercise testing, and several other trials reported more withdrawals of patients receiving GET, all compared with controls." "Although harms were not well reported across trials, GET was associated with a higher number of reported harms and withdrawals in some trials." "Studies also need to report harms more completely to help identify patients negatively affected by certain treatments."
(The AHRQ recently published an addendum that downgrades the general quality of evidence for CBT and GET to "low strength of evidence" and "insufficient evidence" for various outcome measures [15] once studies that use the poor quality Oxford criteria are excluded, as such studies may not reflect CFS patients.)
Reports of harms from exercise are very common outside clinical trials, on the order of 50-75% of those surveyed [16] [17]. The number of patients who have reported harms from exercise therapy is much greater than the number of patients who participated in trials that recorded harms. Symptoms becoming worse after exertion is a characteristic feature of any serious definition of ME or ME/CFS, and exercise stress tests show symptoms and biological parameters worsening abnormally after exercise; these facts prompted the Institute of Medicine to suggest a name change to Systemic Exertion Intolerance Disease [18].
The claim that a medical condition characterized by intolerance to exertion can be safely treated with graded increases in activity is an extraordinary claim that is contradicted by the available evidence: there is no good evidence that CBT or GET safely increases activity in the medium or long term [19]. Evidence from a meta-analysis [20] and a large trial [21] [22] shows no increases of fitness or objectively measured activity. Therefore wording of the first sentence is also misleading and should be changed: "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases." It is important to distinguish between the lofty goals of GET and the actual achievements of patients who have done GET. ME/CFS patients are generally unable to sustain increases in activity when instructed to do so; claiming otherwise, against the evidence, is essentially quackery.
_ Tekaphor ( TALK) 12:53, 26 November 2016 (UTC)
"Serious adverse reactions were rare in both groups (RR 0.99, 95% CI 0.14 to 6.97; one study, 319 participants; moderate-quality evidence), but sparse data made it impossible for review authors to draw conclusions."So the sparse data is referring only to serious adverse reactions, which we all agree are rare - hence 'sparse', but does not say the data on other adverse outcomes is sparse. You are the only one quoting out of context. The authors do not qualify their generalised conclusion, and we should not be doing so either. It is deliberately misleading to take a comment about rare events like "serious adverse reactions" and pretend it applies to a conclusion about all potential adverse effects. -- RexxS ( talk) 04:55, 27 November 2016 (UTC)
Added option 3, which is most consistent with what is presented in the Cochrane review. Arch ( talk) 04:28, 27 November 2016 (UTC)
I'm not confusing efficacy with safety. Don't confuse a planned programme with actual achievements. Data from trials are collected from patients who enrolled and had sessions with the therapist, but the objective evidence of activity and fitness from these trials shows a failure to facilitate increases of activity and fitness. That's why the available evidence doesn't support the blanket claim that increases of activity per se are safe. None of the cited studies in the top section of the Wikipedia CFS article provide evidence of increased activity; they only describe that increases of activity are planned. Hopefully the Cochrane review authors will follow through on their positive response to the person who requested that objective outcomes should be analyzed too.
Based on limited evidence ranging from very low to moderate quality, ambulatory patients meeting loose CFS criteria who participate in a GET programme do not have worse outcomes on average and serious adverse reactions are rare, but the available data are limited. You mention almost no one believes homeopathy is harmful; that may be so, but it also has no credible mechanism for harm (nocebo and toxic impurities aside), whereas ME-CFS has credible mechanisms of harm and good reason to doubt blanket claims about safely increasing activity.
It's true that large sample sizes are required to detect significant differences between groups when the event frequency is rare, good point, but it's not really clear that's why the authors are saying "sparse data made it impossible for review authors to draw conclusions", especially given the context that almost all reviewed trials didn't record or report these outcomes. Anyway, moving on to the main issue...
To all, we need a consensus on what the authors mean by exercise therapy does not worsen outcomes, how to best word it for Wikipedia, and include appropriate caveats about the quality of the evidence. I am open to the interpretation that they generally mean all outcomes on average instead of SARs, but it's not entirely clear this is the case so disagreement was unsurprising. To those who previously opposed the suggestions, what are your thoughts now? Do you agree with RexxS that the authors' statement about exercise not worsening outcomes is referring to outcomes in general? Or is it referring to SAEs, or something else like fatigue? What caveats about the evidence should be included in the Wikipedia article? The relevant sections are under "Authors' conclusions" and "What does evidence from the review tell us?" [25]. I see Arch now supports Option 4. -- Tekaphor ( TALK) 05:09, 30 November 2016 (UTC)
"Serious adverse reactions were rare in both groups ... but sparse data made it impossible for review authors to draw conclusions."is the only place the phrase occurs.
I noticed the RFC today. Since its still active I'll give my 2 cents. All 4 options listed above sound awkward for the lead. It currently reads "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases." I think that sums it up nicely. Cochrane is excellent for providing quality systematic reviews, but we don't want the lead to sound like a lawyer drafted it. In my opinion, put the reference as a footnote after "cases" and put any comments in the body. Dig Deeper ( talk) 03:28, 8 December 2016 (UTC) Dig Deeper ( talk) 03:28, 8 December 2016 (UTC)
That section is just a total clusterfuck right now. I am going to try to consolidate findings and reorganize it into a more readable unified section. Petergstrom ( talk) 01:55, 9 January 2017 (UTC)
Details from this small primary source [26] have been added to the lead a couple of times. I have removed them per WP:MEDRS. We should be using high quality secondary sources. Doc James ( talk · contribs · email) 23:24, 15 January 2017 (UTC)
There is now a peer reviewed paper on this. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial Abmayer ( talk) 11:31, 14 February 2017 (UTC)
This subsection contains a list formatted as article text, running to a length of around 10 lines. Would someone like to format it as a list, with colums? Note that it is grouped according to system, as well.-- Quisqualis ( talk) 00:22, 16 February 2017 (UTC)
This topic urgently needs updating, and I do not now have suitable references to do it myself.
Internationally and in the U.S., this condition is now most commonly referred to in peer-reviewed medical journals as ME/CFS (or CFS/ME) -- ME for Myalgic Encephalomyelitis, a name widely used for the condition (and recognized by the UN World Health Organization) before the CDC designated it Chronic Fatigue Syndrome. The name Systemic Exertion Intolerance Disease was proposed in a recent National Institute of Medicine magisterial study, but has not been widely adopted.
The assertion that "that cognitive behavioral therapy and a gradual increase in activity ... can be beneficial" is, to be polite, highly controversial. The PACE study that affirmed this conclusion has been heavily criticized by internationally known researchers, but has never been withdrawn. Critics included the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [www.iacfsme.org/].
Other resources of note:
Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group [27] Solve ME/CFS [28] This organization has frequent webinars featuring top researchers that are available on YouTube. Not a good reference for an article, but a quick way to ID researchers. One posted November 2016 featuring Anthony L. Komaroff, MD, Simcox-Clifford-Higby professor of medicine at Harvard Medical School amounts to a review of current knowledge about ME/CFS [29]
Rev.trw379 ( talk) 21:22, 11 March 2017 (UTC)
Chronic_fatigue_syndrome#Signs_and_symptoms needs amending to reflect changes in the CDC guidance on symptoms and in particular the 3 required primary symptoms for diagnosis. See https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
C7762 ( talk) 18:31, 14 July 2017 (UTC)
doi:10.1016/S0140-6736(16)32589-2 - this is a primary source but does seem to indicate the safety of self-administered GET. Let the debate begin... JFW | T@lk 11:02, 21 July 2017 (UTC)
The CDC guide has recently been updated and no longer recommends Exercise Therapy or CBT as treatments for CFS. I have modified the Management section to reflect this.
https://www.cdc.gov/me-cfs/treatment/index.html
C7762 ( talk) 09:28, 8 July 2017 (UTC)
The CDC guide now states "There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." I will look at incorporating this into the management section.
C7762 ( talk) 09:33, 8 July 2017 (UTC)
I propose the following :-
"The CDC guide states "There is no cure or approved treatment". However it does cover methods that might provide some relief such as symptom treatment, diet, activity management, counselling, ongoing care, and disability caused by CFS. [1] "
replaces:-
"The CDC guide covers symptom treatment, diet, activity management, counselling, ongoing care, and disability caused by CFS. [2]"
C7762 ( talk) 10:11, 11 July 2017 (UTC)
The CDC guide now opens: 'Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.' I.e., there is less focus on 'fatigue' as the core symptom and more on PEM and sleep in comparison. This is one of the core points of contention for people who don't like the term CFS, so it's important that this is mentioned. Most definitions also mention the 'many body systems' thing, too, so it's relevant to put that in there. Also, both CDC and NICE/NHS describe ME/CFS as a neurological illness, the UK's position confirmed again by the Countess of Mar in the UK House of Lords recently, so that definitely needs to go in there too.
Meanwhile, over in the UK, the MEA and Action for ME (as part of Forward-ME) are pushing for an update like that of the CDC (i.e., removal of CBT and GET as primary treatments), so either that needs to stay in the opening section with the mentions of CBT or GET, or the whole thing needs to be moved to 'Management' (where, TBH, there is already a very good outline of the main issues). It's misleading to put CBT and GET upfront without the balancing info re: the reanalyses of PACE and the removal of CBT/GET from the CDC guide. Wordswordswordsmith ( talk) 20:53, 11 July 2017 (UTC)
I propose a small amendment to wiki/Chronic_fatigue_syndrome#Management to remove any ambiguity on the CDC guidance for CBT and GET.
'From'
'To'
C7762 ( talk) 18:17, 14 July 2017 (UTC)
Hi @
Doc James:, @
Wordswordswordsmith: please consider the following points. In particular I think consensus needs to be reached on point 2.
1. Previous guidance from CDC explicitly recommended CBT and GET. That explicit guidance has been removed. Instead of saying "removed" it would be equally correct to say the CDC does not recommend CBT or GET.
2. I think a lot of the debate about CBT for CFS on Wikipedia is due to crossed wires. CBT as delivered to CFS patients, in the NHS for example, (is "by mental health professional, who has ... training in applying CBT to patients with CFS/ME") is not CBT as most people would understand it to be. And there is little doubt normal CBT would be of great benefit in helping many CFS patients deal with their illness. But CFS-CBT is not about coping statagies, it works on the underlying Theoretical Model (from the PACE trial CBT manual*):-
It assumes CFS is maintained by illness beliefs not any underlying biological mechanism. Unless consensus can be reached that CFS-CBT is different from CBT then I fear debates on the subject on Wikipedia will keep going round in circles.
3. "Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships" describes various methods of counselling or talking therapies (and which could describe supportive CBT helping find coping strategies) but does not describe CFS-CBT as described in the PACE CBT manual or as implemented. It is like saying "various medicines will help diabetes" equates to "Tramadol recommended for diabetes".
4. "stretching and movement therapies,toning exercises" is not Graded Exercise therapy as recommended previously by the CDC or currently by NICE and implemented by say the NHS. GET is tightly defined in the PACE GET manual. The underlying Theoretical Model :-
5. "Avoiding ‘push-and-crash’ cycles through carefully managing activity" better describes the various forms of Pacing than it does GET.
6. There is a direct link from the PACE manuals to the recommendations.The Cochraine review which fed into the NICE recommendations relied most heavily on the PACE trial (Being by way the largest trial of CBT and GET in CFS). The PACE trial manual for CBT Threapists :- http://www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf and the GET manual :- http://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf. If it was to be argued that the manuals do not reflect the guidance then it should be presumed the findings of the PACE trial were not feed into the guidance decision making process.
C7762 ( talk) 10:59, 15 July 2017 (UTC)
CDC2017Tx
was invoked but never defined (see the
help page).![]() | This is an archive of past discussions. Do not edit the contents of this page. If you wish to start a new discussion or revive an old one, please do so on the current talk page. |
Archive 15 | ← | Archive 17 | Archive 18 | Archive 19 | Archive 20 | Archive 21 | → | Archive 23 |
The IoM report offers more than just a good source, it is an extensive piece of research about the whole context of CFS. In the case of the history of the disease the IoM helps close a number of gaps and inaccuracies, I've taken the quoted sources in most cases rather than the IoM itself to produce a new rendering of the history section which I'm posting here for comment. I've not included the current paragraph on XMRV, which personally I'd prefer to see go, but previously it was felt this should stay, my proposed text would not affect this. There are two references which editors should give particular consideration to, one is to the IoM itself re: Ramsay and the other is to Speight 2013 where the publication might not be thought adequate - but my thinking is that if the IoM has quoted it then validity is established.
Myalgic Encephalomyelitis
From 1934 onwards, outbreaks of a previously unknown illness began to be recorded by doctors. [1] [2] Initially considered to be occurrences of poliomyelitis the illness was subsequently referred to as “epidemic neuromyasthenia” [3]. In the 1950s, the term “benign myalgic encephalomyelitis” was used in relation to a comparable outbreak at the Royal Free Hospital in London [4]. The descriptions of each outbreak were varied but included symptoms of malaise, tender lymph nodes, sore throat, pain, and signs of encephalomyelitis [5]. The cause of the condition was not identified although it appeared to be infectious, and the term “benign myalgic encephalomyelitis” was chosen to reflect the lack of mortality, the severe muscular pains, evidence of damage to the nervous system, and to the presumed inflammatory nature of the disorder. [1]. The syndrome appeared in sporadic as well as epidemic cases [6]and in 1969, benign myalgic encephalomyelitis appeared as an entry to the International Classification of Diseases under Diseases of the nervous system. [7]
The authors of a review of 15 outbreaks of benign myalgic encephalomyelitis carried out in 1970, concluded that these were psychosocial phenomena caused by either mass hysteria on the part of the patients or altered medical perception of the community. [8]. These conclusions were based on the higher prevalence of the disease in females in whom there was a lack of physical signs,on that basis the authors recommended that the disease be renamed “myalgia nervosa.” Despite strong refutation by Dr. Melvin Ramsay, the proposed psychological etiology created great controversy and convinced health professionals that this was a plausible explanation for the condition [9].
The continued work of Dr. Ramsay demonstrated that, although the disease rarely resulted in mortality it was often severely disabling" [10], because of this Ramsay proposed that the prefix “benign” be dropped [11] [12] [13]. In 1986, Dr. Ramsay published the first diagnostic criteria for ME, in which the condition was characterized by:
• a form of muscle fatigability that even after minimal physical effort, 3 or more days elapse before full muscle power is restored.
• extraordinary variability or fluctuation of symptoms even in the course of one day.
• an alarming chronicity . [14]
Chronic Fatigue Syndrome
In the mid-1980s two large outbreaks of an illness which resembled mononucleosis drew national attention in the United States. Located in Nevada and New York, the outbreaks involved an illness which was characterized by “chronic or recurrent debilitating fatigue and various combinations of other symptoms, including sore throat, lymph node pain and tenderness, headache, myalgia, and arthralgias”. An initial link to the Epstein-Barr virus saw the illness acquire the name “chronic Epstein-Barr virus syndrome”. [15] [16]
The United States Centers for Disease Control and Prevention convened a working group tasked with reaching a consensus on the clinical features of the illness. Meeting in 1987, the working group concluded that CFS was not new and that the many different names given to it previously reflected widely differing concepts of the illness’s etiology and epidemiology. [17]. The CDC working group chose “chronic fatigue syndrome” as a more neutral and inclusive name for the illness but noted that “myalgic encephalomyelitis” was widely accepted in other parts of the world. [15]. The first definition of CFS was published in 1988 and although the cause of the illness remained unknown there were several attempts to update this definition, most notably in 1994 (), [18]. In 2006, the CDC commenced a national program to educate the American public and health care professionals about CFS. [19]
References
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-- In Vitro Infidelium ( talk) 10:33, 3 December 2015 (UTC)
The CFS article has an exceptional number of sub articles, a total of 6. In comparison neither Fibromyalgia nor Rheumatoid Arthritis have any subarticles. The Multiple sclerosis article does have five subarticles but this is an illness for which there is a substantially greater body of MEDRS. According to http://stats.grok.se/ the main CFS page received 30267 visits in November 2015, the subarticles with their November visitor numbers are:
Maintaining these pages, particularly keeping them in line with updates to the main page involves effort and it is clear that several have been barely touched in years. The reason why there are so many sub pages seems perhaps more to do with the history of edit wars than actual encyclopaedic need. Two sub articles are in reasonable shape: Clinical Descriptions and Treatment, and both of these can probably be fairly easily improved with material from the IoM and P2P reports. The other four seem to me to be in a fairly parlous state, suffering from multiple problems including in some parts substantial WP:SYNTH. My thinking is that these are candidates for redirection back to the main article as per WP:RDR which would leave the option that the articles could be rebuilt at some future date if the need is established. With the four articles effectively deleted, this would allow concentration on improving and maintaining the main CFS article and the two subarticles in a cohesive manner. -- In Vitro Infidelium ( talk) 18:04, 12 December 2015 (UTC)
Proposal to redirect Alternative names for chronic fatigue syndrome article – as discussion above. The sub article is a mish mash of material which lacks encyclopaedic value. The article as written is problematic because it presents what are in effect differing conceptions and then presents them as reducible to differing names for a single disease.
There was some material on the sub article page that was missing from the main article – I’ve corrected this with edits to the History and Controversies section. Past editing has resulted in a non encyclopaedic conflation of historical naming with the ongoing and current ME-CFS (and latterly SEID) debate in clinical contexts, I've put what are now largely redundant names in the history section. Conflation of media controversy with medical controversy is also unencyclopaedic and I’ve split the non medical term yuppie flu off into the controversies section.
All of which I think leaves the sub article redundant. If no one objects by next Monday I’ll put the redirect in place then – unless of course anyone else feels that it’s appropriate to go ahead before then.-- In Vitro Infidelium ( talk) 10:09, 11 January 2016 (UTC)
In response to the suggestion made above to redirect some of the sub page articles Science Watcher noted the need to recover any relevant material to the CFS article before making the redirects, this was a simple task for the Alternate names article but more complex for the Pathophysiology article. Of the 154 references on the Path sub article the vast majority are unreplicated single study refs, or are now irrelevant – XMRV etc, or are woefully out of date; only around 20 or so strongly meet MEDRS – I’ve logged these at: https://en.wikipedia.org/?title=User:In_Vitro_Infidelium/sandbox along with comments of their value etc. If anyone feels that log belongs here, feel free to copy and paste.
The Pathophysiology sub article has a tag from 2009 ! identifying it as “too technical to understand”, having gone through the source list my conclusion is that the article is simply incomprehensible, unsalvagable and needs to be redirected with some urgency.
Proposal to redirect: If no one objects I will redirect the Pathophysiology article to the CFS page as of next Monday.
To ensure that material from the sub article is not lost, I’ve further updated both the Risk Factors and Pathophysiology sections of the CFS page, using those references from the sub article that were:
-- In Vitro Infidelium ( talk) 10:15, 13 January 2016 (UTC)
I have made substantial changes to the Management section intro and to the CBT paragraphs – the GET and other paragraphs still require work. I had hoped to update the Treatment article in tandem with the main article however the scale of work has precluded that and I am now much less optimistic about the Treatment article being salvageable.
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Many parts of the article are unclear, contradictory, and/or confusing to laymen (who aren't used to navigating such hotly disputed ground in medicine). Examples:
I'd guess that editors may be too focused on POV/NPOV and end up adding content in parallel instead of thinking as authors/editors. If some statement seems unacceptably "biased", the correct response isn't to add a statement after that appears equally biased in the opposite direction. This isn't physics: they don't cancel each other out, they leave the reader confused and unsatisfied (or worse, convinced that one "side" has to be "right"). If there is no consensus among experts (or contradictory/insufficient evidence, etc) on some point, the article should just say that outright.
There's also a little too much defensiveness and victim's-advocacy-style statements (eg "this is a real disease, please don't joke about it", "these people suffer a lot, please don't make fun of them"), such as:
This kind of stuff isn't particularly helpful or informative, should likely be stripped since it's dead weight for the article.
Also, the article should probably note somewhere that CFS is generally (and notably) a wastebasket diagnosis in clinical settings: it's usually diagnosed not by specific criteria (signs/symptoms/tests), but by excluding all other possible diseases/disorders. The article even provides an example of this procedure: the CDC guidelines ("eliminate A,B,C,D,E,F,G,H,I,J, then eliminate every other disease known to modern medicine, then diagnose the patient with CFS").
Lastly, the article shouldn't mention specific early theories/treatments that are very far from widespread acceptance as if they're standard, especially not in an introduction that otherwise says "nothing is clear, everything is disputed, even the name":
-- bornLoser ( talk) 11:16, 23 March 2016 (UTC)
* Many parts of the article are unclear, contradictory, and/or confusing to laymen (who aren't used to navigating such hotly disputed ground in medicine).
*I'd guess that editors may be too focused on POV/NPOV and end up adding content in parallel instead of thinking as authors/editors. If some statement seems unacceptably "biased", the correct response isn't to add a statement after that appears equally biased in the opposite direction. This isn't physics: they don't cancel each other out, they leave the reader confused and unsatisfied (or worse, convinced that one "side" has to be "right"). If there is no consensus among experts (or contradictory/insufficient evidence, etc) on some point, the article should just say that outright.
*There's also a little too much defensiveness and victim's-advocacy-style statements (eg "this is a real disease, please don't joke about it", "these people suffer a lot, please don't make fun of them"), such as: • "Quality of life of persons with CFS can be extremely compromised." • "CFS affects a person's functional status and well-being more than major medical conditions such as multiple sclerosis, congestive heart failure, or type II diabetes mellitus" :This kind of stuff isn't particularly helpful or informative, should likely be stripped since it's dead weight for the article.
*Lastly, the article shouldn't mention specific early theories/treatments that are very far from widespread acceptance as if they're standard, especially not in an introduction that otherwise says "nothing is clear, everything is disputed, even the name": • "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases. The medication rintatolimod may be useful for certain people." (as far as I know, CBT isn't specifically effective (ie it's only as effective for CFS as it is for any other disease, like placebo) and rintatolimod was denied approval for lack of efficacy)
Discussion above has suggested some of the current article content and levels of what could be called overloading is not helpful to the lay person's understanding of CFS. As an attempt at approaching these problems I'm proposing the following as suitable for pruning:
-- In Vitro Infidelium ( talk) 15:09, 3 April 2016 (UTC)
Deletions made 10th April. -- In Vitro Infidelium ( talk) 12:18, 10 April 2016 (UTC)
This content "Studies do not however show an improvement based on objective measures [1]." is supported by an non pubmed indexed review as the journal has only existed for a few months. [1]
This is primary sources ". A phase II double-blinded placebo-controlled study published in 2011 showed that 10 out of 15 patients experienced a moderate or major improvement from the drug Rituximab, compared to 2 out of 15 in the placebo group. [2] A phase III follow-up study with 152 patients is ongoing in Norway. [3] The study will be published in 2018." Doc James ( talk · contribs · email) 14:28, 17 April 2016 (UTC)
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Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf and A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS): http://www.ncbi.nlm.nih.gov/pubmed/19855350 were used as sources for two recent additions to the management section. The Bulletin of the IACFS/ME appears not to be peer reviewed, although personally I think Tom Kindlon's work is wholly valid the publication doesn't seem to meet the test of MEDRS - note the URL given in the recent edit was wrong - above is correct. If anyone has a sound argument for support of the Bulletin as MEDRS then I would support use of Kindlon in the Management section. Twisk (not Twist) and Maes is more problematic because although described as a 'review' it does not meet the the standard of MEDRS - quote from abstract: In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. -- In Vitro Infidelium ( talk) 09:25, 27 April 2016 (UTC)
CFS and CFS controversy articles appear in the WP category medical controversies – there is no other somatic disease amongst those listed with the exception of Lyme Disease which is included because of the controversy related to the doubtful diagnosis of ‘chronic lyme’. There are no MDRS that support the categorisation of CFS as a ‘medical controversy’. The are a number of issues about CFS which have been historically controversial but to the extent that these have any relevance, they can/are/should be dealt with in the main article history section. As it stands the current controversies section is a wastebin category of largely irrelevant material. I propose to change the section to Media Controversies with the following text:
Media Controversy
Media treatment of CFS has been controversial. In November 1990 the magazine Newsweek ran a cover story on CFS which although supportive of an organic cause of the illness also featured the term Yuppie Flu. Reflecting a stereotype that CFS mainly affected yuppies, the implication was that CFS was a form of burnout. [1] Use of the term Yuppie flu is considered offensive both by patients and clinicians [2] [3] Books which cast CFS as being either a social construct or wholly psychiatric in origin have added to the media presentation of CFS as a controversial issue. [4] [5]The mistaken linking of CFS with the XMRV retrovirus was widely reported in the news media, with particular attention being given to the issue of blood donation. [6] [7]
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Once this edit is completed I also propose to redirect the Controversies sub article to the new section. As previously discussed the Controversies sub article is beyond salvation and has been tagged since 2008 without any substantial improvement.-- In Vitro Infidelium ( talk) 12:43, 6 April 2016 (UTC)
Clear all the false positives and we are left with non MEDRS or just unsupported statement/opinion from psychiatrists/psychologist dominated publications. One can't have controversy where just one section of the disputing population claims controversy exists - and provides no evidence for where the controversy lies - is it diagnosis, is it on the limitation of management/treatment options, is it on the absence of identified pathology ? -- In Vitro Infidelium ( talk) 09:38, 27 April 2016 (UTC)
There is good evidence now that, at least in some individuals, CFS involves dysfunction at the mitochondrial level in the recycling of ATP-ADP. Please add mention of that fact to the discussion of etiology here. (I am not an expert, or I would undertake the task myself.)
Thanks KC 00:19, 28 May 2016 (UTC)
KC 00:19, 28 May 2016 (UTC) — Preceding
unsigned comment added by
Boydstra (
talk •
contribs)
The material on the 'British situation' has undue weight in terms of it's presence on this page that does nothing to improve understanding of the illness, while the symptoms section is little more than a list and very hard to read. This should be moved into the Controversies page. Leaving it here creates a fork lacking balance and lacks a Neutral point of view WP:NPOV.
It also needs to be much more 'Journalistically sound' by properly drawing together the full impact of those targeted and the limited extent of that activity. — Preceding unsigned comment added by Leopardtail ( talk • contribs) 12:57, 11 May 2014 (UTC)
Could mention "Chronic fatigue syndrome is in your gut, not your head" (Cornell University, June 27, 2016, Science News, sciencedaily.com) Says "Now, for the first time, researchers report they have identified biological markers of the disease in gut bacteria and inflammatory microbial agents in the blood." - Rod57 ( talk) 12:15, 7 July 2016 (UTC)
The pathophysiology section is not the place to speculate about causes or patient beliefs. It's the place where you describe the things that have been documented to be wrong in patients bodies. I have made an edit to remove the inappropriate paragraph by sciencewatcher. — Preceding unsigned comment added by Abmayer ( talk • contribs) 19:07, 7 July 2016 (UTC)
As I'm writing this, sciencewatcher has reverted my edit, with the justification "just because you disagree with it doesn't make it "off-topic". This dispute is easily solved by consulting a dictionary:
The Medical Dictionary for the Health Professions and Nursing defines pathophysiology as 1. The study of structural and functional changes in tissue and organs that lead to disease. 2. Derangement of function seen in disease; alteration in function as distinguished from structural defects. http://medical-dictionary.thefreedictionary.com/pathophysiology
Clearly, it's not "just me". A paragraph that deals with patient beliefs about their illness is severely off topic in the pathophysiology section. I'm going to remove the paragraph again. Please accept that this is not the right place for this information. Abmayer ( talk) 20:31, 7 July 2016 (UTC)
References
This study appears to be significant and has found a pattern of metabolic abnormalities in CFS patients http://www.pnas.org/content/early/2016/08/24/1607571113.full The Open Medicine Foundation (that funded the work) announced in July a replication study was underway http://www.openmedicinefoundation.org/2016/07/06/metabolomic-and-chronic-fatigue-syndrome-robert-naviaux-md/ Most media coverage has been of very poor quality, but this article is perhaps the best http://www.economist.com/news/science-and-technology/21706241-new-test-may-diagnose-mysterious-illness-and-also-help-explain-it-blood The Open Medicine Foundation is a very small CFS research initiative but punching well above its weight - its scientific advisory board has three Nobel laureates and six National Academy of Science members http://www.openmedicinefoundation.org/scientific-advisory-board/ It is led by Stanford's Ronald W. Davis (whose son is very sick with CFS) /info/en/?search=Ronald_W._Davis
I do not know the Wikipedia rules (so have not edited the main page) and am not sure if study replication is required or any other bars met for study quality or size, but even if this is not appropriate to be included now, it seems useful to post in this talk page as probably in time this topic of metabolic defects will become something the page should cover, especially given the common symptom of post exertional malaise where patients get much sicker after minimal exertion, and what Mark VanNess has found to be a totally broken aerobic metabolism than cannot be trained. Where we have good sources, this sort of information is crucial because it gets right to the core of why patients are so infuriated by exercise therapies (patients surveys typically show high levels of dissatisfaction and claims of harm from these treatments). Kicsinyul ( talk) 07:59, 5 September 2016 (UTC)
The addendum is talking about CDC vs Oxford criteria, so the addition to the article isn't quite correct. Can the OP please fix? -- sciencewatcher ( talk) 03:15, 20 August 2016 (UTC)
Also, it should go into the treatment article, and you should give a proper summary of their conclusions on CBT and GET. -- sciencewatcher ( talk) 04:08, 20 August 2016 (UTC)
Thank you
sciencewatcher
I am currently unable to make edits so please feel free to make whatever amendments / deletions you require to my contribution on this subject
C7762 ( talk) 18:07, 20 August 2016 (UTC)
The AHRQ noted that the evidence base on CBT and GET depends heavily on studies that use the Oxford case definition of CFS, which only requires the symptom prolonged fatigue to qualify for a diagnosis of CFS. The AHRQ describes the Oxford case definition as the least specific case definition, with high risk of including patients that have a different illness, or an illness that resolves spontaneously over time. The purpose of the addendum was to assess the impact of the Oxford case definition on the conclusions, and to assess the impact of separating studies of CBT from other counseling and behavioural interventions. Table 5 and 7 show the change in strength of evidence. When Oxford case definition studies are excluded, there is insufficient evidence that GET results in improvement on any outcome (these being function, fatigue, employment, quality of life, global improvement). With CBT, low strength of evidence for improved function is downgraded to insufficient evidence, and low strength of evidence for global improvement is downgraded to insufficient evidence, strength of evidence regarding employment remains insufficient, strength of evidence on fatigue remains low, strength of evidence that CBT does not improve quality of life remains low. Abmayer ( talk) 17:50, 23 August 2016 (UTC)
As far as I know, the Oxford case definition is not actually used by any health agency or in clinical practice. It's a case definition used by some researchers that view CFS as being equivalent to symptom prolonged fatigue, but that's not how the rest of the world has defined CFS. I don't see any misrepresentation of the source material here. On the contrary, this addendum shows that if anything the misrepresentation lies in citing Oxford case definition based material as if it broadly applied to CFS patients when said patients are typically diagnosed with the CDC case definition. Abmayer ( talk) 17:49, 23 August 2016 (UTC)
Hi - I have removed my edit until I or someone else can put together a bit more which covers it in more detail and hopefully a consensus can be reached. The whole reason for the AHRQ addendum is that the validity Oxford criteria is being questioned by AHRQ and several US government agencies which is the background context this edit needs.
Thank you C7762 ( talk) 18:35, 23 August 2016 (UTC)
Link to the report. The addendum is in the beginning. [1] Abmayer ( talk) 15:15, 24 August 2016 (UTC)
Thanks Abmayer , I add reference to executive summary [2] of a symposim? by the National Institutes of Health in 2015 that concluded that "continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery. "
The AHRQ then performed the re-analysis and addendum.
C7762 (
talk)
18:30, 24 August 2016 (UTC)
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Thank you
Aspro for your input. From my point of view it is important to record the 'historical' facts on this matter using references to sources that carry weight and give balance to all viewpoints. The "Wessely" hypothesis/theories are currently being applied to research in fatigue in :- Cancer, end stage kidney failure, multiple sclerosis and stoke patients so it is also relevant going forward. - "What's past is prologue" - I look forward to your further input. Thanks
C7762 (
talk)
08:56, 10 September 2016 (UTC)
The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo: The 5 million pound PACE Trial tested the model that the main maintaining factors for symptoms and disability in CFS are the patients beliefs and physical de-conditioning.
On the 16th September 2016 Queen Mary University London released the analysis of improvement for the trial according to the original protocol (they have not released the Recovery figures according to original protocol) showing that CBT & GET did not result in the Lancet article improvement rate of ~60% but ~20%. The improvement rate for doing nothing was 10%. The 10 point point difference could easily be caused by the reported weaknesses and biases in the study. From this we can read that the trial failed to prove that CBT and/or GET are helpful in improving CFS and therefore failed to prove the underlying model. I am looking forward to hearing others views on this but my feeling is that this section will need to be altered drastically and possibly the psychosocial model for CFS put in an historical context. On the 17th September 2016 QMUL released anonymised trial data under a FOI request as ordered to by a first-tier tribunal. Independent analysis is expect shortly. Thanks. C7762 ( talk) 11:39, 12 September 2016 (UTC)
Please find references for above
PACE Trial CBT treatment manual (page 18) [1]
PACE Trial GET treatment manual (page 20) [2]
Links to Statement of release of data and to Re-analysis according to original protocol available on this page http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#news
Additional reading:-
QMUL's defence of criticisms of PACE trial [3]
Critique of PACE trial [4]
thanks C7762 ( talk) 08:16, 13 September 2016 (UTC)
References
Analysis (of PACE trial data according to original protocol) of Recovery rates for Graded Exercise Therapy and CBT reveals no statistical significance over specialist medical care. The Lancet article
[1] reported recovery rates of 22% for both GET and CBT - this was based on a mid-trial revised protocol where "13% of participants at baseline simultaneously met the trial eligibility criteria for ‘significant disability’ and the revised recovery criteria for normal self-reported physical function"
[2]
[3]. Where as analysis according to the original protocol reveals recovery rates of 7% (CBT) & 4%(GET) with no statistical significance over 3%(SMC).
[4]
[5]
[6]. Thanks
C7762 (
talk)
09:59, 24 September 2016 (UTC)
In response the PACE trial Authors argue against open trial data [7]. C7762 ( talk) 10:45, 24 September 2016 (UTC)
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The UK First Tier Tribunal has decided that Queen Mary University London should make PACE trial data available to Mr Matthees, who requested it under the freedom of information act [1]. The tribunal decision contains some interesting information that might be relevant to the CFS page or some sub page.
During the hearing, Prof. Chalder admitted that no threats have been made against researchers. Back in 2011 newspapers reported that researchers were facing death threats by militants for conducting psychological research into CFS.
She also admitted that a Cochrane review of exercise therapy for CFS was not independent since PACE trial authors were on the review panel.
The tribunal further concluded that there was no evidence of an organized campaign of harassment against researchers or PACE trial participants.
Abmayer ( talk) 16:45, 16 August 2016 (UTC)
References
It is significant enough for the BMJ
[1] to have an article about the Judgement and the online version of "The i" newspaper (formerly part of the Independent group) has an article
[2] on the tribunal judgement that supports the proposed edit by
Abmayer (
talk).This can be considered a reliable secondary source, its editor is
Oliver Duff and the reporter is
Paul Gallagher.
It is also relevant to this section as
1. The eventual release of the data as ordered by the court will allow independent scrutiny of the trial to accept or reject the findings and conclusions of the Pace Researchers. This will once and for all put an end to the Pace trial controversy. I know the Cochrane review is often cited as independent but one of the senior Pace researchers stated in her evidence to the court that in her opinion it was not. Whether it is or not - there is still the perception that it is not independent and this adds to the controversy.
2. the Pace researchers had the opportunity to provide evidence to the court about the harassment (it was part of their defence for not releasing the data) and the court found there was no evidence except for a bit heckling. JFW you argue there is evidence of harassment - please provide references to evidence that the Pace legal team and witnesses did not have access to when presenting the case to the court.
I suggest the following 1st draft :-
Judgement in a First-tier Tribunal (20-22 April 2016) where PACE trial researchers had the chance to present evidence use expert witnesses and be cross examined stated "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder". [3] [4] Judgement in this case ordered the release of the PACE trial anonymised data under the Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial". Approximately £200,000 was spent on legal fees for this appeal by the appellant to try to prevent the release of the anonymised data. [5]. The appellant Queen Mary University London issued a press statement [6] stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community."
a bit need to be added about the main argument for not releasing the data that it was not anonymised enough which the court threw out.
Thanks for considering my input.
C7762 ( talk) 18:22, 23 August 2016 (UTC)
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@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo:
Hi,
Below is my final draft -I have tried to be concise and balanced in the post. I hope that there will be feedback on its content and also layout and a concensus will be reached. When consensus is reached or if I have had no input by the 20 September 2016 (implied consensus) I will post. It is relevant in several pages that talk about the Pace trial and CFS controversies I would like some feed back on where I should post it and where links to it should be posted - otherwise I presume it should be put on 2 or 3 different pages. I hope for your feedback so I we can get the edit right.
Judgement in a
First-tier Tribunal (20-22 April 2016) ordered the release of the PACE trial anonymised data under the
Freedom of Information Act noting "there could be legitimate concerns that they wish to suppress criticism and proper scrutiny of their trial".
[1]
[2].The Tribunal rejected the appellant Queen Mary University London claims that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college.
[3]. The tribunal found by a majority that the data “has been anonymised to the extent that the risk of identification is remote.”.
PACE trial Researchers had the chance to present evidence use expert witnesses and be cross examined also argued that their was extremist activists in the CFS community, the Tribunal judged "assessment of activist behaviour was,in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder".
[4] Queen Mary University London issued a press statement
[5] stating "This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community.". Alem Matthees the second respondent in the case is quoted as saying "This case ended up costing me greatly in time, energy, and health (currently bedridden) … but false or misleading claims of recovery or remission from debilitating illness simply have no place in the scientific literature.”
[6]
The following may or may not be worth adding (comments please):-
Approximately £200,000 was spent on legal fees for this appeal by the appellant to try to prevent the release of the anonymised data. [7].
Jo Edwards,Professor emeritus, UCL said "If scientific interpretation is poor it deserves no protection. If it is good it needs none." [8]
Although part of judgement was a majority of 2 to 1. The verdict as a whole was unanimous.
QMUL argued that they did provide data to other researchers "The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent, and that their data is only shared under obligations of strict confidentiality." "QMUL’s appeal against the Information Commissioner argued in favour of controlled and confidential access to patient data from the PACE trial. QMUL has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis."
But in evidence they also argued that the researchers they provided the data to were not independent. and the court ruled that if they had provided the data to other researcher they would have been in breach of data protect laws.
Thanks - and looking forward to constructive feedback.
C7762 ( talk) 00:03, 1 September 2016 (UTC)
The text looks fine to me. I think it is valuable to link to the February letter from (I think 43) scientists to the Lancet asking for an independent review of the PACE trial data, including academics from Stanford, UCL, DePaul, Berkeley and Columbia. This letter was referred to in the tribunal decision which stated "The identity of those questioning the research, who had signed an open letter or supported it, was impressive". http://www.virology.ws/2016/02/10/open-letter-lancet-again/ (interestingly since sending it to the Lancet, editor Richard Horton offered to publish a letter from the scientists, they wrote one and submitted it to the Lancet, the editor then rejected it - I suspect eventually there may be a page needed for the PACE study itself as events around this trial go beyond CFS research). Note Jo Edwards full name is Jonathan Edwards. I think the cost of the tribunal defence should be included as we know it is true (they confirmed the cost) and it speaks directly to the strong motivation of the university to not allow release of the trials data. The tribunal ruling is mentioned in The Times here (paywalled) http://www.thetimes.co.uk/article/chronic-fatigue-syndrome-could-be-the-body-trying-to-hibernate-3fzp2zgxv with a full-text version visible here http://www.meassociation.org.uk/2016/08/chronic-fatigue-syndrome-could-be-the-body-trying-to-hibernate-the-times-30-august-2016/ Kicsinyul ( talk) 06:44, 3 September 2016 (UTC)
Thanks Kicsinyul for your comments.
I agree the letter should be incorporated within the context of "The identity of those questioning the research, who had signed an open letter or supported it, was impressive" ... "that strong public interest in releasing the data given the continued academic interests" which was given significant weight in the judgement. Strong Public and Academic interest is also reported in the secondary sources.
I also agree that cost of over £200,000 is significant and signifies 'the strong motivation' of withholding the data. Again this is reported in the secondary sources.
An interesting juxtaposition to the £200,000 is that previously QMUL turned down a FOI (not for the actual data) but for a re-analysis of the data according to the original specification on the grounds that it would cost more than £450. My current thinking that this £450 is not part of the core information - any thoughts any one?
Kicsinyul I will update the proposed entry with your suggestions and put it here before I post it.
Is there any other primary or secondary sources for any additional response from QMUL, the PACE trial or the Lancet that I have missed and is felt would be appropriate to incorporate. The judgement and secondary reporting is pretty damning , it is hard to find anything to include in the post in QMUL's favour?
C7762 ( talk) 17:55, 3 September 2016 (UTC)
Kicsinyul I'm not aware of any response from the Lancet, or anything from QMUL apart from their press release that you refer to - the investigators and their allies have been oddly silent. However I am told this official PACE FAQ page has been updated recently, and it does provide responses to some of the criticisms of the trial http://www.wolfson.qmul.ac.uk/current-projects/pace-trial#faq (the fact it has been updated recently is not evident from the page, but it is a primary source for responses to at least some trial criticisms). The Lancet editor Richard Horton asked the open letter signatories (asking for independent re-evaluation of PACE) to write a short letter to be published in the Lancet, alongside a response from the PACE trial authors. The open letter signatories did that, and the Lancet then (bizarrely) rejected it without explanation http://www.virology.ws/2016/08/29/once-again-lancet-stumbles-on-pace/ Kicsinyul ( talk) 07:37, 5 September 2016 (UTC)
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Please See Talk:Chronic_fatigue_syndrome#update for latest. Thanks C7762 ( talk) 10:01, 24 September 2016 (UTC)
Talk:Chronic_fatigue_syndrome/Archive_19#Robert_Naviaux_et_al_.22Metabolic_features_of_chronic_fatigue_syndrome.22 was only added in September 2016 and it seems a shame to archive it (and hide it) so soon before others can see and comment on it. Would anyone object to the comment being copied into this live talk page so we can continue to comment on it ? - Rod57 ( talk) 13:50, 28 September 2016 (UTC)
@Jytdog there is quite a lot of secondary sources related to this, It was my intention to provide them for scrutiny but every thing takes time and auto archiving in 3 weeks does not provide a lot of time. Thanks C7762 ( talk) —Preceding undated comment added 15:25, 28 September 2016 (UTC)
The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18]
-- Wilshica ( talk) 04:33, 12 October 2016 (UTC)Wilshica
I was tempted to add, under 'Research', a mention of an article headed "Metabolic features of chronic fatigue syndrome", published in PNAS. Then I noticed that it is quite recent (I just checked and it's the current edition of PNAS), so perhaps I should hold off till there are some published reactions? Any thoughts?
Article is at: http://www.pnas.org/content/113/37/E5472.short?rss=1&ssource=mfr Wayne 05:46, 24 October 2016 (UTC)
@ Abmayer: @ Jfdwolff: @ Sciencewatcher: @ BallenaBlanca: @ Rod57: @ Alexbrn: @ Paul Coddington: @ Amosabo: @ Doc James: @ Kicsinyul: @ Bluerasberry: @ CFCF: @ Davidcarroll: @ Esh77: @ FlyingVolvo: @ Harej: @ Jyotirmay: @ Maji: @ Keilana Laatu: @ McortNGHH: @ Rytyho usa: @ ShelleyAdams: @ Volshe: @ WhatamIdoing: Hi @Jfdwolff I am confused :- Why have you closed PACE trial tribunal ruling (QMUL v the IC and Matthees) and the PACE trial Update discussion. You say it is not a buliten board - both sections are for proposed changes. The PACE trial tribunal ruling (QMUL v the IC and Matthees) had no negative feedback on my proposed edit for 28 Days so consensus is implied and I will be making the edit in the near future. The PACE trial Update explicitly seeks to build a long term consensus on the subject so changes can be made. It appears to me that you are trying to close down the process of discussion and consensus building - this page covers a contentious issue and consensus building and discussion are important in ensuring it provides correct balanced information. You have also manually achieved Talk:Chronic_fatigue_syndrome_treatment which had a proposed edit (which referenced the NICE guidelines) which I asked for your help with. I have tried to follow your advice so please answer me so I can understand? I also welcome anyone else's point of view. C7762 ( talk) 10:00, 28 September 2016 (UTC)
Thanks @Bluerasberry, There are two separate discussions that have been closed, both related to the PACE trial. The £5M trial has significant influence on national health treatment guidelines.
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Thanks @Jytdog, (please see above) - I can see that it might appear that my input about the analysis of the pace trial data was an update but it was an opening of a debate. If this is not appropriate then no problem but I would appreciate a post stating why there should be no debate rather than just closing it down. My specific proposed edit to the Chronic_fatigue_syndrome#Controversy section has been there for 28 days with out any arguments against so I presume there are no objections. I am new to editing so all advice is welcome. Thanks C7762 ( talk) 15:22, 28 September 2016 (UTC)
@Jytdog, I would also like to remind you that I originally posted the PACE trail Analysis under a discussion about Pathophysiology on this page (as I believed it was relevant) and it was yourself that sub sectioned it with the title Update. Thanks C7762 ( talk) 15:49, 28 September 2016 (UTC)
Thanks @Bluerasberry, @Jytdog for your constructive input I take your points on board about discussions, edit suggestions and brevity e.t.c. I'm not going to push the PACE trial verdict (which was to be under Controversies section ) but I would say The PACE trial has had highly significant influence on the international perception of CFS and treatment guidelines in the UK,Europe, US, Austraila and further afield and the campaign to get the underlying data released was international including 42 international scientists and clinicians [1] and the subsequent analysis [2] [3] [4]. of the court ordered released data calls into question the published results and conclusions and associated treatment guidelines (CBT & GET) [5]. But obviously this is not time (and maybe not the place) so I will let it drop. Thanks C7762 ( talk) 21:19, 28 September 2016 (UTC)
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The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18]
--Wilshica (talk) 04:33, 12 October 2016 (UTC)Wilshica — Preceding unsigned comment added by Wilshica ( talk • contribs)
I have replaced the text in this new section with the previous text about the HPA axis (which was deleted by IVI earlier this year). There was some discussion about restoring this section at the time, but it never happened. -- sciencewatcher ( talk) 17:13, 16 November 2016 (UTC)
Is this source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/ A reliable source? Everything seems to check out but something doesn't feel right. The journal "International Journal of Clinical and Experimental Medicine" has been controversial, and research for "ATP profile tests" don't come up with much. — Preceding unsigned comment added by Petergstrom ( talk • contribs) 07:14, 18 November 2016 (UTC)
Could you send that study to me? Petergstrom ( talk) 16:11, 18 November 2016 (UTC)
The article currently claims that:
The former statement is doubtful, at best; I am not an expert, but have read that the main evidence for graded exercise therapy has been the PACE trial, and the methods and interpretation have been challenged. The latter statement is false as written, since chronic fatigue syndrome often involves post-exertional malaise. (See the symptom list.) 96.255.9.115 ( talk) 04:32, 21 November 2016 (UTC)
Some of the challenges, this year, include:
27.33.143.13 ( talk) 01:43, 23 November 2016 (UTC)
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I am bumping this from the archived talk pages - some editors would like to discuss further before any change is implemented.
The main review article that’s cited in this section is reliable (citation [18]), but the current phrasing is lifted word-for-word from that review, so needs to be either in quotes or rephrased. Also, there’s a final statement at the end, which is taken word-for-word from an earlier, poorer quality source (a conference abstract). I suggest omitting that.
I also suggest adding a line from the main review article already cited about the findings of prospective studies. This approach compensates partially for the problem of recall bias in retrospective studies.
So here’s a suggested rephrase:
It has been estimated that between 25 and 80 percent of adults with CFS report a sudden illness onset, initiated by a flu-like illness or other acute infection. ".[18] In contrast, one population study that identified individuals meeting CFS criteria from a randomly selected population sample found that the majority of cases had a more gradual onset. Such discrepancies may derive from variations between the groups surveyed, as well as different interpretations of the meanings of "acute" and "gradual".[18]
Prospective studies have also examined the proportion of patients with acute, documented infections later develop CFS. 1 to 22 percent of patients with various documented acute infections (which included Epstein-Barr virus (EBV) associated glandular fever, non-EBV-associated glandular fever, Ross River virus, Giardia duodenalis enteritis, parvovirus B19, and Q fever) go on to develop CFS.[18] -- Wilshica ( talk) 05:07, 25 November 2016 (UTC)
The section on psychological factors has a very different tone to the other sections on possible causes. These other sections cite evidence for their respective causal factors. This section states outright: "Current data suggests that genetic, physiological and psychological factors work together to precipitate and perpetuate the illness. [1]" This is a speculation that goes well beyond the data. It is not yet clear on the current evidence that all of these factors "work together to precipitate and perpetuate the illness".
This section should cite any relevant evidence supporting psychological causal factors in the development and/or maintenance of CFS, without making any sweeping assertions as to causation.
Do others agree?
References
-- Wilshica ( talk) 23:30, 21 November 2016 (UTC)wilshica
Given the uncertainty and controversy in this field, we do need to keep evidence and claims separate. What we need to do here is describe the science, not the theories (there are other sections for that). — Preceding unsigned comment added by Wilshica ( talk • contribs) 01:30, 23 November 2016 (UTC)
How about this for the "Psychological" subhead? It sticks to the evidence, and doesn't make any sweeping claims (the last version also made an implicit assumption that correlation=causation, I have made the causal reasoning explicit):
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0098156
Although this is not a secondary source, decreased BG activity has been found in patients without pathological fatigue. Is this something that can be added? Petergstrom ( talk) 21:09, 1 December 2016 (UTC)
These are all the sources I could find. https://www.ncbi.nlm.nih.gov/pubmed/24858857, http://www.nature.com/articles/srep21386, http://www.fasebj.org/content/26/1_Supplement/1035.20, http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-4-14. The second one is on general fatigue not CFS. Petergstrom ( talk) 03:12, 8 December 2016 (UTC)
The following was added here on Dec 5; contested today due to the source here and here, and i removed it here and want to discuss it. Here it is:
The HPA axis dysfunction may be due to oxidative and nitrosative stress and inflammation [1]
References
First the source is fine, a recent review in a high quality journal. What I am struggling with is the content. The conclusion of this paper is that "The stress crash theory that HPA axis hypofunction drives the activation of immune-inflammatory pathways in ME/CFS cannot be validated. This theory is contradicted by a number of findings, including (a) HPA axis hypofunction is only present in a subgroup of patients, (b) there are no changes in HPA axis during the early stages of ME/CFS, and (c) the immunosuppressive effects of GCs are enhanced in ME/CFS." and it goes on from there.
User: Petergstrom we have talked over-simplification in the past, and it is not valid - based on this source you brought, as well as a bunch of others - that there are no super-clear diagnostic criteria or common signs across everyone with the CFS. This is messy and you cannot write stuff like "The HPA axis dysfunction may be due to...." as though HPA hypofunction is a definitive hallmark of the condition as it is currently understood. I am going to add this back with nuance. Jytdog ( talk) 01:26, 11 December 2016 (UTC)
I am raising this comment from an unidentified WP editor to its own seciton
The citation for the claim "Exercise does not make people worse." Is invalid. The Cochrane review states "no evidence suggests that exercise therapy may worsen outcomes" - this is not the same as exercise in general. Secondly, none of the articles reviewed by the Cochrane study used objective measures of activity/exercise. We literally have no evidence whether patients actually increased their activity levels, or simply substituted one type of activity (daily chores etc) for another. See: Does graded activity increase activity? A case study of chronic fatigue syndrome. Friedburg, Journal of Behavior Therapy and Experimental Psychiatry 33(3-4):203-15 · September 2002. Secondly, the quality of harms reporting in clinical trials of graded exercise therapy has been reported as poor and does not meet the same standards of contemporary drug trials. Lastly, short term harms of exercise have been consistently reported, "Influence of exhaustive treadmill exercise on cognitive functioning in chronic fatigue syndrome" "Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome" "Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome" etc. Therefore The claim "Exercise does not make people worse" is not consistent with the current published body of evidence and needs to be removed from the article.
27.33.143.13 (talk) 01:43, 23 November 2016 (UTC)
Its perhaps not fair to say that this claim is invalid (it has some empirical basis), but I do agree that we should be cautious more when commenting on possible adverse/side effects of treatments. And behavioural treatments should be no exception. As the editor above noted, exercise physiology studies show that some patients can have an adverse reaction to intense exertion, at least over the short term. Informal patients surveys also report a high incidence of adverse effects from exercise programmes in general (and these sorts of reports are part of any consideration of treatment adverse/side effects). [1] A more cautious phrasing would be preferred. The suggested edit looks acceptable to me.
References
-- Wilshica ( talk) 02:06, 23 November 2016 (UTC)
The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
We have a June 2016 Cochrane review that states " Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes."
As this is an important point I propose we add "Exercise therapy does not appear to make people worse." to the third paragraph of the lead.
Other wording could include "There is no evidence of harm from exercise." Doc James ( talk · contribs · email) 05:01, 26 November 2016 (UTC)
"In a systematic review of exercise therapy, no evidence of serious adverse effects was found, however data was insufficient to form a conclusion." The Cochrane review explicitly stated they could not form a conclusion on adverse effects, so a point along those lines needs to be stated. Arch ( talk) 04:28, 27 November 2016 (UTC)
Option 2 lacks clarity. It is dishonest to imply something is safe due to "no evidence", when that means lack of evidence. It would be much more accurate to say "Evidence is currently lacking on whether exercise (or exercise therapy) leads to harm". Arch ( talk) 07:06, 26 November 2016 (UTC)
Strongly oppose: Cochrane reviews may be of high quality, yet one has to judge and place them into context to gain any benefit from them. The review is of studies where the cohort had be selected from the umbrella term that covers CFS in all its manifestations. Not to put to finer point on it, five out of those eight used the used the Oxford Criteria. Hardly a random CFS cohort! Therefore, to promote these inclusions in this article (as if it was a matter of fact) is a bit like saying that “ A Cochrane review found that a few patients selected for a certain type of cancer benefited from a ce'rtain type of chemotherapy and thus all cancer patents will suffer no harm at all from this type of treatment”. The supporting review provided - even states - that "Serious adverse reactions were rare” I.e. not totally absent. Although some editors may have enough medical degrees to get a job as a clinical thermometer they appear to be ignorant of the science concerning aetiology and the work that gets done to find the best treatments. So the sentence proposed can not stand as worthy of inclusion in this article. -- Aspro ( talk) 12:37, 26 November 2016 (UTC)
"Do not reject a high-quality type of study (e.g., a meta-analysis) ... because of personal objections to the inclusion criteria, references, funding sources, or conclusions in the higher-level source."We can make judgements about what type of review it is, but Wikipedia editors are not qualified to critique the details of a systematic review to advance their own point-of-view as you're doing. Criticism of a secondary source is valid when published in an equally authoritative publication, but not just on the say-so of a Wikipedia editor. If you have found an authoritative published refutation of the Cochrane review, then by all means, refer to it. Otherwise, your self-produced analysis carries no weight here. -- RexxS ( talk) 22:59, 26 November 2016 (UTC)
Oppose either misleading summary - I think it's important people read the review before deciding on this, including the comments from Tom Kindlon and Robert Courtney, and the author's response. Ideally people would be aware of the public exchange between James Coyne and David Tovey too. Other than with the PACE trial, reporting of harms has been recognised as being generally poor for exercise trials of CFS: https://www.ncbi.nlm.nih.gov/pubmed/26112761 Considering the current controversy surrounding the PACE trial (the studies authors recently losing a court case in which they had argued that Cochrane's review of their data was not independent as they themselves had been involved in the process, so still had control) it seems odd to place such a bold statement founded on this trial so prominently, eg: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial The Cochrane review only looked at outcomes for RCTs, so any summary of its findings must recognise this, particularly given the negative reports seen from patients receiving exercise therapy and the research seeming to indicate abnormal responses to exercise. A lack of evidence of harm from one type of evidence is not the same as there being no evidence of harm. I don't know much about wikipedia, and was told about discussion by someone using it as an example of how wikipedia's rules seem to actively discourage critical thinking. This Cochrane review classed the PACE trial as having a low risk of selective reporting - a judgement by the authors that always seemed to defy Cochrane's own guidelines, and one that has now been left looking absurd following the partial release of data from the trial. — Preceding unsigned comment added by 146.90.86.66 ( talk) 03:36, 27 November 2016 (UTC)
Neutrality requires that each article or other page in the mainspace fairly represent all significant viewpoints that have been published by reliable sources, in proportion to the prominence of each viewpoint in the published, reliable sources." That means that the Cochran review's viewpoint on ET worsening outcomes will be reported along with any other equally authoritative sources that have a view on the issue. It does not mean that a bunch of anonymous editors can decide that they don't like the way a review was conducted and can exclude it. That's not critical thinking, that's a recipe for anarchy and POV-pushing. Wikipedia does indeed discourage editors thinking that their analysis of data supersedes that of reliable sources. An expert here is defined as somebody who knows what the best sources are. So, please check the review you adduce: as far as I can see, Marques et al, 2015 looks at the effectiveness of different interventions and says nothing conclusive about harms as you seem to think. If you believe the proposed summaries are misleading, then please explain how we should be summarising a conclusion that states "no evidence suggests that exercise therapy may worsen outcomes". If you are asserting that the conclusions of the Cochrane review are misleading, then name for us the equally reliable source which states that those conclusions are misleading. If you haven't grasped WP:No original research yet, that means we go by what reliable secondary sources tells us, not what amateur analysis by editors might come up with. -- RexxS ( talk) 04:37, 27 November 2016 (UTC)
Oppose I do not think any of the proposed edits should be included in the lead, although the material being discussed seems be worth covering, at some greater length, in the section on Exercise therapy. Compare this discussion with the article on Major depressive disorder, where the lead briefly mentions treatments, including medication and electro-convulsive therapy, without needing to state that there is 'no evidence of harm', or similar.
Wayne
14:49, 5 December 2016 (UTC)
It is unclear whether medications affect the risk of suicide", and six references. Your assertion that "the lead briefly mentions treatments" is simply untrue, and the lead does state where there is no evidence of a possible harm as a result of treatment. Were you thinking of a different article? -- RexxS ( talk) 18:18, 5 December 2016 (UTC)
where the lead briefly mentions treatments", according to you. That article devotes six sentences and six references to treatments; this article devotes two sentences and two references to treatments. You oppose expanding the content on treatments in the lead of this article. It expect the closer to give your reasoning the weight it deserves. -- RexxS ( talk) 00:18, 6 December 2016 (UTC)
I remember reading a bit about this some months ago, when the activists were outraged at the recommendation. My (possibly faulty) impression was that it's a bit more complicated than that:
So with these thoughts in mind, I'm slightly concerned about the statement that "it doesn't make people worse". I wouldn't insist that this one sentence explain everything, though, as this is a bit more than the lead should handle. But perhaps a different phrasing would be more precise. WhatamIdoing ( talk) 06:23, 26 November 2016 (UTC)
Both supporting options are unacceptable. Option 2 is even worse than the original Option 1.
Cherry picking poorly evidenced statements from a systematic review while ignoring the context given in the same source is not consistent with WP:MEDRS. Misinformed content in relatively high profile articles also puts the health of patients at risk. But a limitation of WP:MEDRS is that it does tend to encourage a blind adherence to Cochrane reviews, which is a serious issue when such reviews can merely reflect the biases inherent in the primary studies. Experts such as John Ioannidis are concerned that "evidence-based medicine has been hijacked" and Cochrane reviews "may cause harm by giving credibility to biased studies of vested interests through otherwise respected systematic reviews" [10]. Figure 2 of the Cochrane review of exercise for CFS documents the high risk of bias in exercise studies. James Coyne has expressed concerns about conflicts of interest present in the Cochrane review in question [11].
The Cochrane review in question [12] is specifically referring to serious adverse events (e.g. hospitalisation and death), and the evidence is poor because most trials did not record adverse events in general and when they did it was not reported adequately. The Cochrane review itself states that "sparse data made it impossible for review authors to draw conclusions". In the NIH P2P systematic review is a similar conclusion: "Harms were rarely reported across studies (insufficient evidence)." [13] Older reviews make similar statements. It is negligent to omit this context when placing a questionable and controversial statement at the top of the Wikipedia article: "Exercise therapy does not appear to make people worse." The proposed alternative is worse: "There is no evidence of harm from exercise."
WP:MEDRS states that reports from US government agencies such as the Agency for Healthcare Research and Quality provide trustworthy mainstream views for health content on Wikipedia. This is what a recent AHRQ report (Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has to say about the current subject [14]: "Harms were not well reported, although in one trial patients receiving GET reported more adverse events compared with those receiving cognitive behavior therapy (CBT), adaptive pacing, or usual care; one trial reported more withdrawals of patients receiving GET, one trial had a high percentage of patients refusing repeat exercise testing, and several other trials reported more withdrawals of patients receiving GET, all compared with controls." "Although harms were not well reported across trials, GET was associated with a higher number of reported harms and withdrawals in some trials." "Studies also need to report harms more completely to help identify patients negatively affected by certain treatments."
(The AHRQ recently published an addendum that downgrades the general quality of evidence for CBT and GET to "low strength of evidence" and "insufficient evidence" for various outcome measures [15] once studies that use the poor quality Oxford criteria are excluded, as such studies may not reflect CFS patients.)
Reports of harms from exercise are very common outside clinical trials, on the order of 50-75% of those surveyed [16] [17]. The number of patients who have reported harms from exercise therapy is much greater than the number of patients who participated in trials that recorded harms. Symptoms becoming worse after exertion is a characteristic feature of any serious definition of ME or ME/CFS, and exercise stress tests show symptoms and biological parameters worsening abnormally after exercise; these facts prompted the Institute of Medicine to suggest a name change to Systemic Exertion Intolerance Disease [18].
The claim that a medical condition characterized by intolerance to exertion can be safely treated with graded increases in activity is an extraordinary claim that is contradicted by the available evidence: there is no good evidence that CBT or GET safely increases activity in the medium or long term [19]. Evidence from a meta-analysis [20] and a large trial [21] [22] shows no increases of fitness or objectively measured activity. Therefore wording of the first sentence is also misleading and should be changed: "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases." It is important to distinguish between the lofty goals of GET and the actual achievements of patients who have done GET. ME/CFS patients are generally unable to sustain increases in activity when instructed to do so; claiming otherwise, against the evidence, is essentially quackery.
_ Tekaphor ( TALK) 12:53, 26 November 2016 (UTC)
"Serious adverse reactions were rare in both groups (RR 0.99, 95% CI 0.14 to 6.97; one study, 319 participants; moderate-quality evidence), but sparse data made it impossible for review authors to draw conclusions."So the sparse data is referring only to serious adverse reactions, which we all agree are rare - hence 'sparse', but does not say the data on other adverse outcomes is sparse. You are the only one quoting out of context. The authors do not qualify their generalised conclusion, and we should not be doing so either. It is deliberately misleading to take a comment about rare events like "serious adverse reactions" and pretend it applies to a conclusion about all potential adverse effects. -- RexxS ( talk) 04:55, 27 November 2016 (UTC)
Added option 3, which is most consistent with what is presented in the Cochrane review. Arch ( talk) 04:28, 27 November 2016 (UTC)
I'm not confusing efficacy with safety. Don't confuse a planned programme with actual achievements. Data from trials are collected from patients who enrolled and had sessions with the therapist, but the objective evidence of activity and fitness from these trials shows a failure to facilitate increases of activity and fitness. That's why the available evidence doesn't support the blanket claim that increases of activity per se are safe. None of the cited studies in the top section of the Wikipedia CFS article provide evidence of increased activity; they only describe that increases of activity are planned. Hopefully the Cochrane review authors will follow through on their positive response to the person who requested that objective outcomes should be analyzed too.
Based on limited evidence ranging from very low to moderate quality, ambulatory patients meeting loose CFS criteria who participate in a GET programme do not have worse outcomes on average and serious adverse reactions are rare, but the available data are limited. You mention almost no one believes homeopathy is harmful; that may be so, but it also has no credible mechanism for harm (nocebo and toxic impurities aside), whereas ME-CFS has credible mechanisms of harm and good reason to doubt blanket claims about safely increasing activity.
It's true that large sample sizes are required to detect significant differences between groups when the event frequency is rare, good point, but it's not really clear that's why the authors are saying "sparse data made it impossible for review authors to draw conclusions", especially given the context that almost all reviewed trials didn't record or report these outcomes. Anyway, moving on to the main issue...
To all, we need a consensus on what the authors mean by exercise therapy does not worsen outcomes, how to best word it for Wikipedia, and include appropriate caveats about the quality of the evidence. I am open to the interpretation that they generally mean all outcomes on average instead of SARs, but it's not entirely clear this is the case so disagreement was unsurprising. To those who previously opposed the suggestions, what are your thoughts now? Do you agree with RexxS that the authors' statement about exercise not worsening outcomes is referring to outcomes in general? Or is it referring to SAEs, or something else like fatigue? What caveats about the evidence should be included in the Wikipedia article? The relevant sections are under "Authors' conclusions" and "What does evidence from the review tell us?" [25]. I see Arch now supports Option 4. -- Tekaphor ( TALK) 05:09, 30 November 2016 (UTC)
"Serious adverse reactions were rare in both groups ... but sparse data made it impossible for review authors to draw conclusions."is the only place the phrase occurs.
I noticed the RFC today. Since its still active I'll give my 2 cents. All 4 options listed above sound awkward for the lead. It currently reads "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases." I think that sums it up nicely. Cochrane is excellent for providing quality systematic reviews, but we don't want the lead to sound like a lawyer drafted it. In my opinion, put the reference as a footnote after "cases" and put any comments in the body. Dig Deeper ( talk) 03:28, 8 December 2016 (UTC) Dig Deeper ( talk) 03:28, 8 December 2016 (UTC)
That section is just a total clusterfuck right now. I am going to try to consolidate findings and reorganize it into a more readable unified section. Petergstrom ( talk) 01:55, 9 January 2017 (UTC)
Details from this small primary source [26] have been added to the lead a couple of times. I have removed them per WP:MEDRS. We should be using high quality secondary sources. Doc James ( talk · contribs · email) 23:24, 15 January 2017 (UTC)
There is now a peer reviewed paper on this. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial Abmayer ( talk) 11:31, 14 February 2017 (UTC)
This subsection contains a list formatted as article text, running to a length of around 10 lines. Would someone like to format it as a list, with colums? Note that it is grouped according to system, as well.-- Quisqualis ( talk) 00:22, 16 February 2017 (UTC)
This topic urgently needs updating, and I do not now have suitable references to do it myself.
Internationally and in the U.S., this condition is now most commonly referred to in peer-reviewed medical journals as ME/CFS (or CFS/ME) -- ME for Myalgic Encephalomyelitis, a name widely used for the condition (and recognized by the UN World Health Organization) before the CDC designated it Chronic Fatigue Syndrome. The name Systemic Exertion Intolerance Disease was proposed in a recent National Institute of Medicine magisterial study, but has not been widely adopted.
The assertion that "that cognitive behavioral therapy and a gradual increase in activity ... can be beneficial" is, to be polite, highly controversial. The PACE study that affirmed this conclusion has been heavily criticized by internationally known researchers, but has never been withdrawn. Critics included the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [www.iacfsme.org/].
Other resources of note:
Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group [27] Solve ME/CFS [28] This organization has frequent webinars featuring top researchers that are available on YouTube. Not a good reference for an article, but a quick way to ID researchers. One posted November 2016 featuring Anthony L. Komaroff, MD, Simcox-Clifford-Higby professor of medicine at Harvard Medical School amounts to a review of current knowledge about ME/CFS [29]
Rev.trw379 ( talk) 21:22, 11 March 2017 (UTC)
Chronic_fatigue_syndrome#Signs_and_symptoms needs amending to reflect changes in the CDC guidance on symptoms and in particular the 3 required primary symptoms for diagnosis. See https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
C7762 ( talk) 18:31, 14 July 2017 (UTC)
doi:10.1016/S0140-6736(16)32589-2 - this is a primary source but does seem to indicate the safety of self-administered GET. Let the debate begin... JFW | T@lk 11:02, 21 July 2017 (UTC)
The CDC guide has recently been updated and no longer recommends Exercise Therapy or CBT as treatments for CFS. I have modified the Management section to reflect this.
https://www.cdc.gov/me-cfs/treatment/index.html
C7762 ( talk) 09:28, 8 July 2017 (UTC)
The CDC guide now states "There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)." I will look at incorporating this into the management section.
C7762 ( talk) 09:33, 8 July 2017 (UTC)
I propose the following :-
"The CDC guide states "There is no cure or approved treatment". However it does cover methods that might provide some relief such as symptom treatment, diet, activity management, counselling, ongoing care, and disability caused by CFS. [1] "
replaces:-
"The CDC guide covers symptom treatment, diet, activity management, counselling, ongoing care, and disability caused by CFS. [2]"
C7762 ( talk) 10:11, 11 July 2017 (UTC)
The CDC guide now opens: 'Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.' I.e., there is less focus on 'fatigue' as the core symptom and more on PEM and sleep in comparison. This is one of the core points of contention for people who don't like the term CFS, so it's important that this is mentioned. Most definitions also mention the 'many body systems' thing, too, so it's relevant to put that in there. Also, both CDC and NICE/NHS describe ME/CFS as a neurological illness, the UK's position confirmed again by the Countess of Mar in the UK House of Lords recently, so that definitely needs to go in there too.
Meanwhile, over in the UK, the MEA and Action for ME (as part of Forward-ME) are pushing for an update like that of the CDC (i.e., removal of CBT and GET as primary treatments), so either that needs to stay in the opening section with the mentions of CBT or GET, or the whole thing needs to be moved to 'Management' (where, TBH, there is already a very good outline of the main issues). It's misleading to put CBT and GET upfront without the balancing info re: the reanalyses of PACE and the removal of CBT/GET from the CDC guide. Wordswordswordsmith ( talk) 20:53, 11 July 2017 (UTC)
I propose a small amendment to wiki/Chronic_fatigue_syndrome#Management to remove any ambiguity on the CDC guidance for CBT and GET.
'From'
'To'
C7762 ( talk) 18:17, 14 July 2017 (UTC)
Hi @
Doc James:, @
Wordswordswordsmith: please consider the following points. In particular I think consensus needs to be reached on point 2.
1. Previous guidance from CDC explicitly recommended CBT and GET. That explicit guidance has been removed. Instead of saying "removed" it would be equally correct to say the CDC does not recommend CBT or GET.
2. I think a lot of the debate about CBT for CFS on Wikipedia is due to crossed wires. CBT as delivered to CFS patients, in the NHS for example, (is "by mental health professional, who has ... training in applying CBT to patients with CFS/ME") is not CBT as most people would understand it to be. And there is little doubt normal CBT would be of great benefit in helping many CFS patients deal with their illness. But CFS-CBT is not about coping statagies, it works on the underlying Theoretical Model (from the PACE trial CBT manual*):-
It assumes CFS is maintained by illness beliefs not any underlying biological mechanism. Unless consensus can be reached that CFS-CBT is different from CBT then I fear debates on the subject on Wikipedia will keep going round in circles.
3. "Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships" describes various methods of counselling or talking therapies (and which could describe supportive CBT helping find coping strategies) but does not describe CFS-CBT as described in the PACE CBT manual or as implemented. It is like saying "various medicines will help diabetes" equates to "Tramadol recommended for diabetes".
4. "stretching and movement therapies,toning exercises" is not Graded Exercise therapy as recommended previously by the CDC or currently by NICE and implemented by say the NHS. GET is tightly defined in the PACE GET manual. The underlying Theoretical Model :-
5. "Avoiding ‘push-and-crash’ cycles through carefully managing activity" better describes the various forms of Pacing than it does GET.
6. There is a direct link from the PACE manuals to the recommendations.The Cochraine review which fed into the NICE recommendations relied most heavily on the PACE trial (Being by way the largest trial of CBT and GET in CFS). The PACE trial manual for CBT Threapists :- http://www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf and the GET manual :- http://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf. If it was to be argued that the manuals do not reflect the guidance then it should be presumed the findings of the PACE trial were not feed into the guidance decision making process.
C7762 ( talk) 10:59, 15 July 2017 (UTC)
CDC2017Tx
was invoked but never defined (see the
help page).