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PACE Trial

One small point about the current wording: according to the PACE Trial page, the patients were recruited using the Oxford criteria. It only said they may meet other criteria, which I take to be entirely random chance whether they do or not. We should note that the Oxford criteria were used as the primary patient selection method, since that may in some way skew the patient make-up of the other subgroups. – RobinHood70 20:35, 22 February 2011 (UTC)

Thanks, SW. – RobinHood70 21:12, 22 February 2011 (UTC)

Malcolm Hooper has now weighed in publicly on the PACE Trial, fairly thoroughly tearing it a new one. His initial response can be found here and then there's a response to a private e-mail here. There are certainly some interesting points in the two that suggest some fairly serious flaws and/or gross assumptions in the PACE Trial's methodology. – RobinHood70 03:20, 24 February 2011 (UTC)

Thanks RobinHood70, this reminds me of the recent "XMRV is contamination" press release from the Wellcome Trust. Once you get past the uncritical media hype surrounding the PACE study, the results were unimpressive and a whole bunch of serious flaws have been spotted. I was surprised that the definition of "normal" levels of fatigue and physical functioning are still bad enough to qualify for entry into the PACE trial. Hooper has raised many other interesting points, and it appears that Jameson didn't do his homework before complaining, but obviously a blog can't be used here. I added a permalink to your post above for archival purposes. It is going to take me a while to process the Lancet paper but I will contribute what I can. Does the aftermath qualify for inclusion in the controversy section? - Tekaphor (TALK) 03:59, 27 February 2011 (UTC)

Thanks for the link fix, Tekaphor - due to a screw up by our ISP, we lost our Internet shortly after I posted and only got it back now, so I never noticed the current-link instead of perma-link. – RobinHood70 18:49, 1 March 2011 (UTC)

Possibly related to the PACE trial, possibly a more general point: This article could give the impression that CBT can only be used as part of one unified approach for CFS, when a number of different approaches can be taken. eg: CBT in the PACE trial was based upon the fear-avoidance model of CFS, but at the other end, CBT could be used on the assumption that CFS is perpetuated by non-cognitive-behavioural factors, largely outside of the patient's control, but which CBT can still be helpful for managing emotional/behavioural responses, sleep management, anxiety and depression related to illness, etc. My suggestion would be: make the general CBT section more wide-ranging, with an explanation that different approaches and understandings of CFS can be taken by therapists, and then have a more specific section on the CBT approach taken under PACE, which is probably the most significant (and recent) CBT trial for CFS; OR some sub-headings under CBT to briefly explain some of the different approaches that can be taken. Maybe this is expecting too much detail? I'm just worried that 'CBT' is currently talked about like it can only be one thing for CFS, and that may be misleading. Any thoughts from others? Flatronal (talk) 11:08, 7 August 2011 (UTC)

Ideally we should find a source that discusses the various approaches. In the article we reference the book "Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment" to discuss CBT, but unfortunately this is not available free. I just came across this wikipedia page which lists all the CBT approaches techniques and systems. --sciencewatcher (talk) 16:18, 7 August 2011 (UTC)

Thanks for that wiki link. That complicates things further though. I was reminded about some recent CBT stuff on 'acceptance' and CFS, which is quite different to past approaches. Also though, within those approaches to CBT, they can be applied differently to CFS depending upon the practitioner's understanding of the illness.

There is lack of good, clear and concise sources on CFS that cover all the different approaches that can be taken. Because it's also so complicated, it makes it difficult for us to condense the arguments and ideas of others fairly ourselves. However, I fear that people could read the current section on CBT without really learning anything about what it is, other than 'something psychological'.

Is 'An Integrative Approach to Evaluation and Treatment' a good choice for the primary source here? It is a bit old. I've not read it all, but the Wessely chapter seems to have lots of personality stuff, citing mainly stuff from pre-92 whose findings go against his own later research (other than perhaps a role for perfectionism). Maybe the description of CBT given in the PACE paper could be the basis for a summary of that approach?:

Cognitive behaviour therapy (CBT)

CBT was done on the basis of the fear avoidance theory of

chronic fatigue syndrome. This theory regards chronic fatigue

syndrome as being reversible and that cognitive responses

(fear of engaging in activity) and behavioural responses

(avoidance of activity) are linked and interact with

physiological processes to perpetuate fatigue. The aim of

treatment was to change the behavioural and cognitive

factors assumed to be responsible for perpetuation of the

participant’s symptoms and disability.

This is quite specific though, and may increase the danger of people assuming all CBT for CFS follows this model. Unless we stumble upon a really useful source, it could be a lot of work to try to summarise and make clear the different approaches that can be taken. The prospect of that work triggers my fear-avoidance response. Maybe just a brief note should be added to explain that different approaches to CBT for CFS can be taken?

I'll paste up the PACE description of GET too:

Graded exercise therapy (GET)

GET was done on the basis of deconditioning and exercise

intolerance theories of chronic fatigue syndrome. These

theories assume that the syndrome is perpetuated by

reversible physiological changes of deconditioning and

avoidance of activity. These changes result in the

deconditioning being maintained and an increased

perception of eff ort, leading to further inactivity. The aim of

treatment was to help the participant gradually return to

appropriate physical activities, reverse the deconditioning,

and thereby reduce fatigue and disability.

Sorry for the long comment and the lack of any real progress. I might try adding some more specifics to the PACE section later. edited to cut down the quotes from PACE, and reduce the length of my comment. Flatronal (talk) 18:56, 7 August 2011 (UTC)

(←) the PACE study is fatally flawed. It has so many flaws that it should not be considered a reliable source. I also believe that there should be a rebuttable presumption of invalidity of statements and papers coming from the proven frauds such as Wessely, White, Sharpe, etc., all of whom, I believe are authors on this paper. JustinReilly (talk) 02:12, 27 November 2011 (UTC)

Just because we as patients disagree with these people doesn't make them frauds. In order to discredit their work, we would need reliable sources that indicate that there are problems with it. Same thing goes with the PACE trial itself. Since the Lancet has chosen to dismiss the myriad of objections with mere hand-waving, completely ignoring any kind of rebuttal of the issues raised, and nobody else has seen fit to address the issue, Wikipedians are left with no choice but to publish the results of the PACE trial as reported. – RobinHood70 02:37, 27 November 2011 (UTC)

I have a problem with this section: "The trial generated a furious response from patient groups and campaigners. Letters to the editor critiqued the definitions of secondary outcomes, questioned protocol changes, and expressed concern over generalisability of the results. Professor Malcolm Hooper branded the results "unethical and unscientific" and submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet have considered the submissions and rejected them. A Lancet editorial conjectured that the strong negative response might be due to the dismay over the debilitating illness, "but also from an active campaign to discredit the research."" This section is also present (copied from?) in the Misplaced Pages page about controversies. I would like it to be removed completely for the following reasons: The text does not make clear that from the start it is all more or less quoted from the -anonymous- Lancet editorial and is therefore an expression of someone's personal opinions. But because of this omission it may well be mistaken for facts by a Misplaced Pages reader. In the text "letters to the editor" are mentioned, including an explanation of what these letters are supposed to have said (according to the anonymous Lancet editor). This explanation however is not verifiable. Because Misplaced Pages does not allow using letters to editors as references we can't look them up. Professor Malcolm Hooper is also mentioned with his official complaints. However, we can't check what these complaints are, again, because of Misplaced Pages regulations the documents can't be referenced or quoted from. The anonymous Lancet editorial, by the way, claims that the 43 page complaint by Hooper is available on Misplaced Pages (where?). Again we see a personal opinion in the statement that the MRC and The Lancet have "considered" the submissions and rejected them. Is this true? Can we check this? Hooper denies that his complaints were considered before rejection but we can't cite or reference this, once more because of Misplaced Pages regulations. Finally, the Lancet editorial is mentioned and the presumptions that are made about the "dismay" and the "campaign". Even this is suggestive enough to have a psychological impact on Misplaced Pages readers and may be read as facts, rather than opinions. So, as long as it is not clear what the facts are, who wrote what, who is in fact the author of the editorial, and it is not possible to use references for the issues mentioned, I think it should go, in both Misplaced Pages pages. Does anyone disagree with this? Saflieni (talk) 19:14, 2 May 2014 (UTC)

I believe it will be better to make to make the paragraph more neutral. The whole incident had a lot of news coverage from secondary sources not cited in this paragraph so it is notable.

Proposal for more neutral wording:

The trial generated a swift response from patient groups and campaigners. Letters to the editor critiqued the definitions of secondary outcomes, questioned protocol changes, and expressed concern over generalisability of the results. Professor Malcolm Hooper branded the results "unethical and unscientific" and submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet considered the submissions but rejected them.

The changes are to remove "furious" as a judgmental term and to remove the reporter's editorial "conjecture" statement as having insufficient weight to be included in the Chronic fatigue syndrome treatment article. Changes to the identical section in the Controversies related to chronic fatigue syndrome article should be discussed there as the context of that article is different. Ward20 (talk) 21:03, 2 May 2014 (UTC)

I'm not sure that's a good idea. The response clearly was furious, and it is very notable. If you want another source, use Charles Shepherd, who talked about "anger and frustration" of patients (in the "Dangers of research into chronic fatigue syndrome" article). In fact we already have Lancet and BMJ sources for this, so I don't see an issue. Saflieni appears to be a bit unclear about how wikipedia's sourcing works. --sciencewatcher (talk) 23:09, 2 May 2014 (UTC)

Sciencewatcher and I already discussed this on his own talk page. He is missing the point: we are not robots who are supposed to apply rules without thinking. To pretend that a source is valid only because The Lancet or BMJ prints it, without any consideration for content and context, is not wise, especially when it concerns the personal opinions of editors and journalists. This gets very close to the 'ad verecundiam' fallacy any encyclopedia should avoid. Anyway, "Dangers of research into chronic fatigue syndrome" by Nigel Hawke is already referenced. The problem is that this page is about treatments and it does not really address the key problems with the PACE trial. Central to the controversy are not the frustrations of a few crazy people, like the two referenced opinions want us to believe, but problems with the science of the study. I have already explained to Sciencewatcher the issue of changing the parameters during the PACE trial to inflate the figures for "recovery". Professor Hooper points this out in his reply to a letter by White: "It cannot be acceptable to describe PACE participants as having “normal” levels of fatigue and physical function when they could simultaneously be sufficiently disabled -- as judged by their levels of fatigue and physical function -- to have qualified for entry into the PACE Trial in the first place." Dr Shepherd wrote a similar comment that was printed in Psychological Medicine in 2013 as a letter to the editor. And this is just one of many such issues. I can live with the suggestion of Ward20, but would still like the claim 'considered' to be removed, as it is disputed by Hooper and we can't cite that. Saflieni (talk) 08:13, 3 May 2014 (UTC)

It's pretty obvious that the trial generated a furious response from very many activists - you just need to look at the forums for that. We have two sources, including a very non-anonymous Charles Shepherd quoted in the reference we already have in the article.

As for the 65-to-60 issue, if you can find a more reliable source, put it in (based on weight). It looks like the Lancet didn't think it was relevant. I asked you that you should perhaps investigate the reasons why that is the case. Just because all the CFS activists are currently bleating about it, doesn't mean they are right and the Lancet is wrong. --sciencewatcher (talk) 14:52, 3 May 2014 (UTC)

A large number of scientists have addressed the 65-60 issue, along with other issues, from the start 3 years ago. I have mentioned two. It is not very respectful of Sciencewatcher to qualify comments by respected experts as 'bleating'. Besides, it's not a big secret, you can look it up yourself in the 2011 paper. The Lancet itself is not impartial in this controversy, as these issues are all signs of flaws in the peer reviewing process for the publication. The Lancet is not a flawless machine. It's people at work who, just like anywhere else, are capable of mistakes, bias and cognitive dissonance. It is not for Misplaced Pages to take sides here or judge the value of personal opinions of individuals, whether they are editing magazines or employed elsewhere. Misplaced Pages should represent the facts as neutral as possible. Besides, the responses of activists should not be mixed up with the comments made by experts. Those are separate issues. Saflieni (talk) 21:00, 3 May 2014 (UTC)

The problem with your 'experts' is that they tend to push crappy science (XMRV even after negative studies, or mould even though there is zero evidence) and then they badmouth good science that doesn't fit their preconceived ideas. I'm not saying PACE is perfect - it does have flaws. However it's much better science than XMRV or mould. Some of the 'experts' are worse than others. Anyway, as I said, feel free to put it into the article if you can find a good source. --sciencewatcher (talk) 21:17, 3 May 2014 (UTC)

Now you're just babbling and drifting off topic. If Sciencewatcher is unwilling to address my arguments he should take a step back and allow serious editors to weigh in here. Misplaced Pages was not created for judgmental people to push their private opinions. I still believe Ward20 offers the best solution. Saflieni (talk) 21:52, 3 May 2014 (UTC)

Even though this is off topic, I would like to add that the two experts I mentioned by name acknowledged the negative results of XMRV in public in 2011, even to the BBC, and again in 2012 after the Lipkin study. Dr Shepherd was himself harassed by some disappointed people. None of the scientists I refer to who critiqued the PACE papers fit the description Sciencewatcher offers. I suggest he spends some time reading the original papers by White et al and the comments by others that were published in The Lancet, Psychological Medicine and other media to get a better understanding of the subject. Saflieni (talk) 23:06, 3 May 2014 (UTC)

Sciencewatcher distinguishes between the reliability of sources of, on the one hand, an editorial opinion (anonymous) and a column summing up unverified claims to arrive at a preconceived point, and, on the other hand, correspondence by a variety of experts published in the same medical journals. I can't find reason for this distinction in Misplaced Pages guidelines. Correspondence appears to be a valid source similar to editorials and opinion pieces: "Peer reviewed medical journals are a natural choice as a source for up-to-date medical information in Misplaced Pages articles. They contain a mixture of primary and secondary sources. Journal articles come in many types, including original research ranging from vast studies to individual case reports, reviews, editorials and op-ed pieces, advocacy pieces, speculation, book reviews, letters to the editor and other forms of commentary or correspondence, biographies, and eulogies." (MEDRS) I was invited to investigate the reasons for specific protocol changes during the PACE trial. I re-read the replies written by White in The Lancet (2011) and BMJ (2013). These are also letters to editors and would therefore be deemed 'unreliable' according to Sciencewatcher. However, neither of the letters by White provide an answer to the specific points of criticism, such as the 65-60 issue. Some other reminders from Misplaced Pages guidelines and policy: "It is a generally accepted standard that editors should attempt to follow , though it is best treated with common sense, and occasional exceptions may apply." "Avoid stating opinions as facts." "Editing from a neutral point of view (NPOV) means representing fairly, proportionately, and, as far as possible, without bias, all of the significant views that have been published by reliable sources on a topic." "The tone of Misplaced Pages articles should be impartial, neither endorsing nor rejecting a particular point of view. Try not to quote directly from participants engaged in a heated dispute; instead, summarize and present the arguments in an impartial tone." "Passages open to multiple interpretations should be precisely cited or avoided." Saflieni (talk) 10:57, 4 May 2014 (UTC)

Last set of arguments from me: To put things in perspective on the 'furious response' bit, I came across an article by Simon Wessely in The Spectator (27 august 2011) where he does the same. I quote: "OK, let’s keep a sense of proportion. It’s only a small number of people who do this." I also came across some serious verbal abuse directed at Ellen Goudsmit and another few of 'my experts' as Sciencewatcher calls them. I agree it is notable, but still think it is over-emphasized. And there is no clear distinction between the "campaigners" and the experts whose comments on the science of the trial were published in The Lancet, Psychological Medicine and BMJ. I believe Misplaced Pages should include a short summary of the experts' arguments rather than quote an opinion about those letters without the proper attribution. I guess I'll wait a few days for editors to read all my arguments and respond before I'll enter suggested changes. Saflieni (talk) 17:29, 4 May 2014 (UTC)

You seem to conveniently missed all the bits of the wikipedia policies that talk about weight. That is what 'proportionately' means. It doesn't mean that we present all viewpoints according to how loudly they shout. Instead it means we give them space according to their quality. Read through 'Due and undue weight' in the NPOV page, and also 'assessing evidence quality' in MEDRS. If it was included we would probably have to say that 'xxx wrote a letter to the editor pointing out...', basically showing that it was that person's opinion. Also we would have to give the authors' response. IMO that would be a weight violation, and a waste of space. If people are interested they can easily find the letters to the editor and read them themselves. However if the consensus is that we should include them, then go ahead. --sciencewatcher (talk) 18:01, 4 May 2014 (UTC)

I can't continue to repeat the same arguments if you refuse to read or address them. One last time: A personal opinion by an anonymous editor, or a news article voicing claims that went unchecked, are not evidence, nor facts, and should not be included as such. You can attribute them to the individuals whose opinions they are. If you wish to mention a controversy, you have to describe the viewpoints of both sides. We're not talking about opinions of individual campaigners, but very specific comments on the content of a scientific study by a substantial number of experts, many of them scientists with PhD's and decades of practice in the field, from different countries and continents, that were published by these journals you claim are of high quality. They all seem to have arrived at very similar conclusions so it is not difficult to summarize. But since you seem not very well informed about the facts of the matter and have revealed on this talk page that you are not neutral yourself, you might not be the best judge here. (Please note there is nothing in the policies or guidelines to support the claims you have been making so far. To the contrary, as I pointed out before. It seems you are making up your own rules.) Saflieni (talk) 23:15, 4 May 2014 (UTC)

Actually it is you who is not understanding wikipedia policy. An anonymous editorial very much satisfies WP:RS. A bunch of pHds writing letters to the editor does not satisfy WP:MEDRS. I suggest you actually read the policies.

As I've stated to you before in my talk page, if you want to edit wikipedia you need to sometimes edit AGAINST your personal opinions. That is what I did when I was the first person to add XMRV even though I thought it was probably a bunch of crap (which it later turned out to be), and I added PACE even though I think CBT is woefully lacking in effectiveness and based on a dubious etiology.

Arbitrary Break 1

You make many assumptions but you don't back them up with facts. Why don't you start by specifying where exactly we can find your pretend rules in the guidelines, instead of just waving at them broadly. The sections in the NPOV and MEDRS pages you've been referring to don't even apply. Those specific guidelines concern references to support broad scientific views and medical claims, which are not under discussion here. Talking about guidelines; your negative remarks about 'my' intentions, 'my' beliefs/politics, 'my' experts, and your 'warning' are violations of the "Comment on content, not on the contributor" and the "Do not threaten people" guidelines. Misplaced Pages is not a private toy and your quarreling attitude is not helpful. Saflieni (talk) 18:37, 5 May 2014 (UTC)

To finalize the discussion on guidelines and move on: Misplaced Pages guidelines do not distinguish between opinion articles like editorials, letters to editors, or other opinion pieces published in the same journals as far as reliability is concerned. If Sciencewatcher (or anyone else) fails to point out where a distinction is made in the guidelines I will ignore his remarks on this matter. More relevant here is this advice: "Use sources that directly support the material presented in an article and are appropriate to the claims made. The appropriateness of any source depends on the context." The context here is the 'furious response'. The sources directly supporting the material are the published letters. Saflieni (talk) 02:08, 6 May 2014 (UTC)

The guidelines to distinguish between them with regard to weight. "Giving due weight and avoiding giving undue weight means that articles should not give minority views or aspects as much of, or as detailed, a description as more widely held views or widely supported aspects. Generally, the views of tiny minorities should not be included at all, except perhaps in a "see also" to an article about those specific views".

The letters themselves are linked to directly from the Lancet article --sciencewatcher (talk) 02:36, 6 May 2014 (UTC)

As for the complaint itself: I can see your point. The Lancet says the complaint exists on wikipedia, but that doesn't appear to be the case. Were they talking about the mecfsforums wiki that you linked? Normally that type of webpage wouldn't be classed as a reliable source, but it looks like it may actually be the main source for Hooper's complaint. It wouldn't be a problem if Prof Hooper put the complaint on his own personal website - that would satisfy WP:RS. However when it appears on a forum like this, it's more of a problem. I would recommend getting some opinions from other editors before deciding whether or not to add it. --sciencewatcher (talk) 02:36, 6 May 2014 (UTC)

Generally speaking, forums or a wiki are not considered a reliable source. That said, given Hooper's activity in this area, I suspect he would have mentioned it to someone if there were bogus copies of his report floating around, and that word of that would have spread quickly. Googling, I found a wealth of corroborating evidence and at least at a quick glance, nothing at all to suggest any impropriety, so I'm inclined to allow it to be used in the context of a short blurb about the response to the PACE trial.

As to the anonymous editorial, it certainly sounds like that's the Lancet's (formal?) reply to all the hubbub, so if we're going to include references to Hooper's response, it's only fair to include the Lancet's as well. After all, WP is about verifiability, and it's verifiable that the Lancet responded. Finally, I would also support the removal of the word "furious", since it could be interpreted in that context as either "angry response" or "a flurry of responses". While there's no doubt that "angry" applies to many of the individual responses, it certainly doesn't apply to all of them, so I don't think it's appropriate to have that as a possible interpretation. If we wanted to use "flurry" or maybe say there was a "vigorous response", or something along those lines, that works for me. – RobinHood70 03:48, 6 May 2014 (UTC)

The guideline mentioned by sciencewatcher applies to references for medical claims. The comments in The Lancet etc. are of a different nature. Below is my suggestion for improvement. I tried to represent reactions from all sides as best as possible. I suggest using as reference a page on the Lancet's website with links to both the editorial and the correspondence, rather than linking a great number of individual letters, but have no clue if this is against guidelines: http://www.thelancet.com/journals/lancet/issue/vol377no9780/PIIS0140-6736%2811%29X6022-1.

Nope, that was quoted from NPOV. Also: "NPOV is a fundamental principle of Misplaced Pages and of other Wikimedia projects. This policy is nonnegotiable and all editors and articles must follow it." --sciencewatcher (talk) 16:08, 6 May 2014 (UTC)

There is a difference between judging the weight of research for supporting medical claims, that's what the guideline sciencewatcher mentioned is for, and opinion articles with no research content and no peer review. Those are in completely different realms. Misplaced Pages doesn't distinguish between types of opinion articles published in the same journals, because they are what they are: opinions, not facts. Saflieni (talk) 16:26, 6 May 2014 (UTC)

No, there is no mention of 'medical claims' anywhere at all in the NPOV page. It is the fundamental principle of wikipedia, and it is the only rule that you cannot break. It applies to opinions just as much as anything else. The Lancet's opinion carries a lot more weight than mine, for example. --sciencewatcher (talk) 17:10, 6 May 2014 (UTC)

I fail to see the relevance. This guideline doesn't specify what I asked, and it doesn't apply to the content of the published letters. They do not contain statements supporting fringe science or anything of that order. The editors of The Lancet judged these letters significant enough to be included in the discussion so who are you to question their value? Doing that makes you part of the discussion. That's not your place as a Misplaced Pages editor and that's why Misplaced Pages doesn't distinguish between these types of articles. Do you have any plans to help improve this page, or are you just going to continue like this forever? Saflieni (talk) 17:41, 6 May 2014 (UTC)

I just realized that one of the comments (Kewley) is already being used as a reference in this Article. Saflieni (talk) 19:03, 7 May 2014 (UTC)

Here's my suggestion: The publication of trial results in The Lancet generated a vigorous response. Letters to the editor by some specialists and patient advocates expressed concern over generalisability of the results and questioned protocol changes during the course of the trial that resulted in some participants meeting criteria for “trial recovery” at baseline. Patient groups expressed disappointment over news media interpreting the definition of “recovery to normal by trial criteria" as “cured”. Professor Malcolm Hooper submitted a 442 page response to the Medical Research Council and a shorter 43-page complaint to the Lancet. The MRC and the Lancet considered the submissions but rejected them. A Lancet editorial expressed suspicions of an active campaign to discredit the research. Saflieni (talk) 09:26, 6 May 2014 (UTC)

NB: The confusion between "recovery" (in terms of trial criteria), and "cured" (associated with reaching average levels of health) also hit BMJ. A summary of White et al (2011) on the page Shortcuts described trial results as follows: "Less than a third of patients were cured by either treatment (30% (44/148) after CBT and 28% (43/154) after graded exercise therapy)." http://www.bmj.com/content/342/bmj.d1168 Saflieni (talk) 16:17, 6 May 2014 (UTC)

If there are no serious objections anymore... If someone could advise on my question about referencing the comments (I also found some pdf's of the Lancet correspondence pages through researchgate that could be linked but I didn't find all of them yet.) As these seem to represent the most pressing concerns, I guess it won't be necessary to also include a reference to the Hooper pages. Saflieni (talk) 16:18, 7 May 2014 (UTC)

Sciencewatcher: stop bullying. If you don't have any valid arguments to support your actions, your actions are not valid either. Saflieni (talk) 18:02, 8 May 2014 (UTC)

My arguments are above. I've better things to do with my time than getting insulted and attacked when I try to help a newbie understand wikipedia policies. You've proven that you completely misunderstand NPOV, which is the most important wikipedia policy. Please follow WP:CIVIL otherwise there will be no further discussion on this talk page. --sciencewatcher (talk) 18:40, 8 May 2014 (UTC)

I guess you refer to your argument "You seem to have come here to try and shoehorn something into wikipedia due to your beliefs/politics. That is never going to work here, so I'm just warning you that you're wasting your time." and a number of others along that line. I don't find that helpful. We disagree on the question if the NPOV section you refer to applies here. That doesn't mean you are right and I am wrong. The text I have improved decribes the responses to the trial by different groups. The most reliable sources for who said what are representatives of those groups themselves. Allowing one group to interpret what the others say and presenting that as fact on Misplaced Pages is not a neutral point of view. Your idea of weight seems to be based on personal likes and dislikes, not on Misplaced Pages policies. Anyway, I have put this opinion forward, but I don't see you addressing it. Just reverting my edits, because you don't like them is not an example of civil behaviour. Saflieni (talk) 19:02, 8 May 2014 (UTC)

I'm sorry that that comment upset you. I was merely trying to let you know that ignoring wikipedia policies is a waste of time here. I've removed that comment. You seem to be under the illusion that WP:NPOV and WP:WEIGHT applies just to some sections (medical, scientific). That is NOT the case. They apply to all articles. That's not my opinion, that's how wikipedia works. If you read the policies you will see this. I'm not reverting your edits because I "don't like them". I'm reverting them purely based on policy. --sciencewatcher (talk) 19:46, 8 May 2014 (UTC)

Again you ignore my arguments. Besides, how is this not expressing likes and dislikes: "The problem with your 'experts' is that they tend to push crappy science (XMRV even after negative studies, or mould even though there is zero evidence) and then they badmouth good science that doesn't fit their preconceived ideas." If you took the time to read the comments you would realize you are jumping to the wrong conclusions. But even so, if you describe a controversy between different points of view, you have to summarize those points of view accurately, without inserting your own bias. It doesn't matter who wrote them, it does not even matter if they are true or not. That's irrelevant to the issue as becomes clear from the guidelines: "Use sources that directly support the material presented in an article and are appropriate to the claims made." "Avoid stating opinions as facts." "Try not to quote directly from participants engaged in a heated dispute; instead, summarize and present the arguments in an impartial tone." And so on. These were all violated in the original text. I haven't yet seen any specific guidelines to support your opinion. My guess is they don't exist. Saflieni (talk) 21:56, 8 May 2014 (UTC)

I was more referring to people like Shoemaker and Myhill (among others) who are regarded as 'experts' on forums and spout really bad quackery. Some like Hooper aren't exactly experts, but not quacks either. Since you quoted Hooper, that was why I said 'your experts'. Hooper, Goudsmit, etc. certainly aren't experts as far as wikipedia's sourcing guidelines are concerned. However, getting back to the point: the guidelines you should be looking at are WP:NPOV and {{WP:WEIGHT]] (actually they're both the same guidelines, but different parts of it). The point is that it does matter 'who wrote them'. You can't just quote everyone equally, as that is a weight violation. --sciencewatcher (talk) 23:02, 8 May 2014 (UTC)

Again not addressing my arguments: This is a description of the different points of view in a controversy! Weight has nothing to do with it! Different guidelines apply in this situation than the section of NPOV you keep referring to. I explicitly quoted them several times already and, as I have argued over and over again, it's also common sense. You fail to produce any guideline that says differently. If you can't accept that you might be wrong, file a dispute or something. I give up. Saflieni (talk) 23:39, 8 May 2014 (UTC)

No, WEIGHT applies to controversies as well. Please quote where it says that WEIGHT only applies to scientific or medical info (as you seem to believe). I certainly could be wrong, but it looks like I've done a lot more editing here than you, so perhaps you should consider the possibility that you are misunderstanding the guidelines. Have you read the 'neutral point of view' page in its entirety? --sciencewatcher (talk) 23:43, 8 May 2014 (UTC)

The controversies you think of are of a different nature and concern majority/minority views along the lines of evolution/creationism, medical science/homeopathy, and so on. The NPOV section you refer to even gives an example of this: the flat earth concept. We're not dealing with that here. This controversy is about perceived flaws in the methods used during a specific trial. We're not discussing a "subjective" issue here, but responses published in reliable sources concerning a verifiable issue. If we choose to describe the vigorous/furious responses, we have to summarize and attribute them accurately. Even where fringe science is concerned Misplaced Pages NPOV FAQ WP:ASSERT states: "When a statement is an opinion (e.g. a matter which is subject to dispute or commonly considered to be subjective), it should be attributed in the text to the person or group who holds the opinion." So, "weight" should be considered as appropriate to context, which in this case is the controversy itself: ask yourself what are the most reliable sources for each opinion? If you allow either side of a dispute to represent the views of the other side, you are strawmanning instead of applying "weight". I have already quoted guidelines for how best to describe the different views in a situation like this. But I believe I have answered all your questions many times already and in many different ways, while you fail to produce any guideline that say differently. Why don't you start concentrating on that? Saflieni (talk) 08:34, 9 May 2014 (UTC)

Arbitrary Break 2

The point is that the Lancet carries a lot more weight than each of those letters. So how much space should we give them? It would seem that the Lancet editorial should get the majority of the space, and then Hooper as he is the main opponent (and he has the most coverage). That is the way the article was before, and it is better than your version.

Also, regarding "not subjective" and published in "reliable sources": in that case we should only be using reliable medical sources, and letters to the editor definitely fail MEDRS.

Let me ask you two questions: have you fully read the MEDRS and NPOV guidelines? Did you yourself write any of those letters to the editor that appear in the Lancet website? --sciencewatcher (talk) 13:58, 9 May 2014 (UTC)

London Criteria

Following on that topic, since the study uses the London criteria in the subgroup analysis, and we mention that as well, it would be good if we could add that to the criteria descriptions. From a quick Google, it looks like a bit of a minefield ( ) and all the hits I found were non-MEDRS sources. The first mentions that there are multiple online versions, but I wasn't able to find anything definitive. Does anybody have any good sources for what it is...or might be? – RobinHood70 21:12, 22 February 2011 (UTC)

Yes, we should probably add it. Here is the reference for the London Criteria used in the PACE trial: "The London criteria. Report on chronic fatigue syndrome (CFS), post viral fatigue syndrome (PVFS) and myalgic encephalomyelitis (ME). Westcare, Bristol: The National Task Force, 1994." Unfortunately I can't find any online versions either. It looks like it was published in a book which is now out of print and unavailable. The best info seems to be here so maybe just give the proper ref and also a link to that page on the ME Association website. --sciencewatcher (talk) 21:45, 22 February 2011 (UTC)

Okay, added here. I didn't add it to Chronic fatigue syndrome, as it doesn't appear to be a "notable" criteria outside of the fact that it was used in the recent PACE trial (and it sounds like another PACE trial in 2004, though I only came across that in passing). I tried to summarize the criteria and took the rest from the Additional Information bullet points immediately beneath the criteria description. I also linked both references to it in this article (since they were so far apart), but haven't checked anywhere else. As always, go nuts if you think there's anything that needs to be changed. – RobinHood70 00:43, 23 February 2011 (UTC)

I suggest putting it after the CCC to reduce the weight of it as it is not mentioned in reviews. Ward20 (talk) 19:53, 23 February 2011 (UTC)

I was just putting it in alphabetical order (failing to notice, at the time, that the Canadian criteria isn't). Feel free to move it and/or mention that it's not peer-reviewed. – RobinHood70 21:30, 23 February 2011 (UTC)

I moved it to the bottom of the section. Ward20 (talk) 03:17, 24 February 2011 (UTC)

Updated BMJ clinical evidence review of CFS available

It's available here. Does anyone have access to the full text? --sciencewatcher (talk) 23:29, 30 May 2011 (UTC)

Non MEDRS source

Is there a reason a survey from a patient group is cited on the page? Has it been discussed to establish a consensus?

Also, the link is dead and should be updated or replaced with one from the internet archive (if people decide to use it). WLU (t) (c) Misplaced Pages's rules:/_complex 23:54, 27 June 2011 (UTC)

It should probably be re-written to present it in this light, but I think the general idea is to present the fact that the patient community as a whole (especially the subsets of it where neurological and immunological symptoms are predominant) roundly rejects the notion that CBT is meaningfully helpful. By extension, surveys such as the one quoted reflect this. While it may not be MEDRS in and of itself, I think it fairly presents the dichotomy between some doctors' views and those who are actually experiencing the symptoms. To not present this information at all would be pretending like patients agree that CBT is helpful. Many (most?) of us don't, along with several researchers and scientists (as presented here, though this is not a MEDRS source either). I think the citation above was the attempt to present this from a neutral point of view, but in so doing, it perhaps lost a little of the appropriate context. – RobinHood70 19:46, 28 June 2011 (UTC)

Rather than presenting a survey as a source, a statement by such an agency should probably be used. It would be clearer, it would present it as a perspective of one group, and it wouldn't attempt to put it on the same par as medical research. Right now it looks like there was survey, which is as good as a medical trials that preceded it. A summarized statement would be better, without the pretence of a methodical research. WLU (t) (c) Misplaced Pages's rules:/_complex 13:47, 29 June 2011 (UTC)

Just to...errr...not follow up on this ;) I didn't take your advice above for the simple reason that looking at what's already in the original section, as well as the two new ones you just removed, I didn't really feel there was anything that needed to be added. The sections already cover the fact that there are differing views/results by patient organizations. – RobinHood70 06:51, 7 July 2011 (UTC)

Management techniques

Hi. I've just started looking through this article.

This final sentence could be misleading:

A systematic review published in 2004 concluded that depression was the only factor associated with unemployment, :and that only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with :restoring the ability to work, although for questions of disability and employment in CFS, the limitations inherent :in the current literature are extensive.

Even though it makes clear the limitations of the current literature, it does give the impression that depression in CFS is associated with unemployment, while disability levels are not, when the review itself shows that there is evidence of association, but that the measures of disability used in CFS, and the papers that use them, suffer from limitations which prevent a firm conclusion. I get the impression that this sentence is intended to 'balance' the one before, but I'm not sure how much useful information it provides. I tried including more detail on the evidence and it's limitations as explained in the review, but it ended up too long unwieldy for such a minor point. I think it would be best to just remove it, but didn't want to do so if it had been a matter of prior debate. Flatronal (talk) 10:08, 12 August 2011 (UTC)

Taking a quick look at this, it looks like we are just presenting the results of 2 reviews - one of which shows that no intervention gets patients back to work, and the other review shows that CBT, GET and rehabilitation do get patients back to work. When there are two reviews showing different results it's important for us to present them both. If we are misrepresenting one of the reviews then certainly we should change the wording, although from a quick perusal it looks like we're presenting a pretty fair summary of the abstract of the review. I haven't read the full-text, but if it does say what you are saying, it might be worth adding another sentence to clarify. --sciencewatcher (talk) 15:28, 12 August 2011 (UTC)

We could just remove the reference to depression, which seems superfluous and potentially misleading, reducing the sentence to "A systematic review published in 2004 concluded that only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work, although for questions of disability and employment in CFS, the limitations inherent in the current literature are extensive."

I've pulled out the relevant section from the review... to me, it doesn't sound compelling enough for inclusion, and as the prior sentence only says "none of the interventions had proven to be effective in restoring the ability to work", I'm not sure if there is any real conflict here.

What Is the Evidence That in Individuals With CFS, Treatments Are Effective in Restoring the Ability to Work?

Among the 14 interventional trials with work or impairment results after intervention, there were too few of any single intervention with any specific impairment domain to allow any assessment of association. Only 4 longitudinal studies26-29 reported employment at baseline and follow-up after intervention (Table 6). Two additional studies11, 30 reported employment at both times with no interventions. In the 4 studies with interventions, the percentage of patients with CFS who were employed at baseline ranged from 0% to 39%; at follow-up (3-42 months after baseline), employment ranged from 44% to 53%. Interventions associated with increased employment at follow-up included individualized rehabilitation programs,27, 29 cognitive behavior therapy,26 and exercise therapy.28 The studies are not comparable, however, owing to differences in study design, duration of follow-up, and types of intervention. Furthermore, up to 29% of patients were lost to follow-up. Still, all 4 studies showed improved employment outcomes, whereas the 2 studies11, 30 with no interventions showed worsening of employment outcomes.

If we really wanted to include this review in to balance the prior review, then I'd suggest: "A systematic review published in 2004 found four papers which measured the impact of intervention upon employment levels, all reporting improved employment outcomes." It could just as fairly be condensed to "A systematic review published in 2004 found that there were too few papers on any single intervention with any specific impairment domain to allow any assessment of association" - which would seem to support the prior review.

I'm in favour of taking it out. Flatronal (talk) 12:01, 13 August 2011 (UTC)

I had another look at these studies. The Chambers review is just quoting what Ross says in their comment section: "No specific interventions have been proved to be effective in restoring the ability to work". So really there is no discrepancy. I think the main points are that although 4 studies showed improved employment outcomes, there is insufficient evidence to say that any one treatment can restore the ability to work. I'd suggest just reworking the text to clarify, and maybe removing the bit about depression. If anything we should probably remove the Chambers review and just leave Ross as it gives more detail, and include the comment about no treatment being proven effective in restoring the ability to work. --sciencewatcher (talk) 22:33, 13 August 2011 (UTC)

Okay - I cut it down a bit. I'm not really sure if there needs to be any significant mention of the lack of evidence around 'return to work'. PACE should be providing some new data on this soon, so we could wait for that.Flatronal (talk) 07:56, 14 August 2011 (UTC)

I just added a bit more info from the review about which treatments showed an improvement, and the fact that the 2 studies with no intervention showed worsening outcomes. Yes, hopefully PACE should give some more definitive info. --sciencewatcher (talk) 14:39, 14 August 2011 (UTC)

I just added the info posted above on CBT and GET in to the PACE section. I tried to find a way to integrate it in to the CBT/GET sections, but couldn't find a source to support that claim that these approaches were typical of CBT and GET programmes for CFS, and it sounded clunky when they were presented as only examples from one trial. There are also different approaches that can be taken, so I didn't want to be seen to claim otherwise. While not perfect, I think their inclusion is an improvement. Flatronal (talk) 10:49, 15 August 2011 (UTC)

One other thing - why is Specialist Medical Care reduced to SMT in the PACE section? In PACE and elsewhere it's referred to as SMC. I also think it should be made clearer that PACE compared SMC+CBT and SMC+GET with SMC alone, rather than CBT and GET alone with SMC alone. — Preceding unsigned comment added by Flatronal (talk • contribs) 11:01, 15 August 2011 (UTC)

Just changed it.Flatronal (talk) 11:16, 15 August 2011 (UTC)

It was me who added the PACE info in the first place with "SMT". I had a look at the original refs, and none mention SMT, it is SMC. I think I just got carried away because all the other treatments end in "T". Thanks for fixing. --sciencewatcher (talk) 13:57, 15 August 2011 (UTC)

No probs. There are too many acronyms with CFS - surely they could have called the Chalder Fatigue Scale something else! I think I'm done here. Thanks for the help.Flatronal (talk) 16:09, 15 August 2011 (UTC)

The evidence for CBT/rehabilitation/exercise and employment outcomes is very poor

Regarding the issue of CBT/rehabilitation/exercise "restoring the ability to work", the evidence is very poor. In the full text the authors Ross et al refer us to Table 6 for this information. Akagi et al 2001 for CBT: no control group. Dyck et al 1996 for rehabilitation: I don't know if there was any control group, but the employment outcome was based on only 2 patients (one becoming employed and one remaining not so at followup). Fulcher & White 1997 for exercise therapy: although it was divided into an exercise group vs a flexibility group, and those "working or studying at least part time" went from 39% at baseline for all patients to 66% of those who completed the exercise treatment and12 months followup, this was a cross-over study and this figure does not account for dropouts and does not tell us the % of those who did the flexibility program so is essentially an uncontrolled comparison. Back to the Chambers et al 2006 systematic review, when referring to Ross et al 2004, it states: "Although the authors found some small studies of interventions (including rehabilitation, CBT and graded exercise therapy ) that reported improved employment outcomes, they concluded that no intervention has been proved to be effective in restoring the ability to work." Of course, this does not necessarily mean the reported improvements were because of the interventions, it just means these studies reported improved outcomes. So after considering the poor quality of the evidence for employment outcomes and the fact that the authors of these systematic reviews conclude no intervention have proven to restore the ability to work , I removed the previous Misplaced Pages sentence and restored the original caveat.

Maybe I was a tad hasty deleting it entirely, so here is the text and wikimarkup of the removed statement citing Ross et al 2004 if anyone wants to use it again after factoring in the above: "While there is little evidence for any one intervention's effectiveness in restoring the ability to work, four papers which measured employment rates before and after different treatment approaches - cognitive behavior therapy, rehabilitation, and exercise therapy - all reported some improvement while two papers with no intervention both showed worse employment outcomes at follow-up." <ref>{{cite journal |author=Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB |title=Disability and chronic fatigue syndrome: a focus on function |journal=Arch. Intern. Med. |volume=164 |issue=10 |pages=1098–107 |year=2004 |pmid=15159267 |doi=10.1001/archinte.164.10.1098 |url=http://archinte.ama-assn.org/cgi/reprint/164/10/1098}}</ref> - Tekaphor (TALK) 12:14, 29 October 2011 (UTC)

The following point is already in the article, but just noting here for the above conversation, the PACE trial was larger and better designed than the above studies and showed that CBT and GET have no significant effect on restoring the ability to work at 52 weeks follow up. - Tekaphor (TALK) 04:41, 5 June 2013 (UTC)

Belgian report

@IP 74... a lot of active editors on these pages -- including me -- doubt the efficacy of CBT. However, person opinions must come second to WP:MEDRS rules on validity and weight of resources. We have to wait until the weight of published material supports any proposed content and in this case for reasonable secondary-sourced content in this area. Please have this debate on the talk page where it started. Page hoping content makes everyone's life more difficult. TerryE (talk) 15:51, 17 April 2012 (UTC)

It's not entirely the editor's fault...it was me who suggested that the info would be better on this page IF it is added, but I'm not sure it satisfies MEDRS for the same reasons you give. Feel free to move this talk section into the main CFS talk page if you wish. --sciencewatcher (talk) 20:31, 17 April 2012 (UTC)

I added it back in for the reasons stated on the main CFS talkpage . MEDRS must come second to WP:NPOV. - Tekaphor (TALK) 02:42, 18 April 2012 (UTC)

Sorry, for interfering guys. I missed the suggestion to move the debate and putative content to this talk page, though I was tracking the discussion on the main CFS page. I felt that it then suddenly appeared here without explanation in the talk page or editorial support. I understand Tekaphor's arguement. -- TerryE (talk) 17:03, 22 April 2012 (UTC)

Recent changes

I'm having a lot of difficulty justifying the recent changes.

• The initial change to the first CBT paragraph really just expands on what was already there. Not a big deal to me whether that stays or is reverted.
• In the changes to the next paragraph, I see no reason why the date of the Sharpe study is relevant. Studies on all sides of the issue go back for a decade or more; none are particularly relevant on WP when compared to secondary sources.
• Where do we have support for the "weak" and "strong" hypotheses of CBT? I'm not aware of anything that lends credence to that belief, and in the very next paragraph, it covers low evidence quality for CBT outside of specialist settings, and that overall there are no conclusive improvements from it. It's a huge stretch to say that CFS being completely reversible via CBT is a "strong hypothesis". Having said that, though, I think it's entirely appropriate to outline the fact that there are two different approaches to CBT.

For the time being, I'm reverting all three changes pending further discussion and supporting evidence. – RobinHood70 23:19, 14 February 2013 (UTC)

That is directly from the ref (from the book) - it's available free on google books (at least, that page is). When it talks about "weak" and "strong" it's nothing to do with quality of evidence - it's just about whether they believe cognitive factors are weakly or strongly implicated in the etiology. I'm happy enough with the original text, but I decided to change it to this after reading the reference, as it seems to explain the situation more fully. I'd suggest you read that page of the book and see what you think. --sciencewatcher (talk) 23:31, 14 February 2013 (UTC)

I'm not getting previews for any page numbers that high—it cuts out after page 88, except for the back cover. Do you have a link, or can you tell me what you searched on that brought it up? – RobinHood70 00:32, 15 February 2013 (UTC)

here is the link. The page is 248, which is in the preview. Just scroll down and you should see it - it jumps a bunch of pages. Note that I changed the page number in the reference. --sciencewatcher (talk) 05:09, 15 February 2013 (UTC)

It must show different pages for different people because it's still cut off after page 88 for me. Even switching to a different browser so it wouldn't have the same cookies, I couldn't see it, though it looked like there it was sort of trying...I could see the outline of the page but it said I'd exceeded my limits for the day. I'll give it another shot tomorrow.

In any event, if you want to put it back to how it was with the book as a ref, I won't dispute it, but I feel I should point out that that book is over 15 years old now. We should probably find something a little more up-to-date as support for those kinds of statements if we can. – RobinHood70 06:44, 15 February 2013 (UTC)

Conflating changes in questionnaire scores with changes in fatigue.

Given the difficulty of measuring fatigue in a meaningful manner, I was surprised by the way in which this page spoke of studies finding certain changes in fatigue, without explaining what proxies were being used to measure fatigue.

This causes particular confusion when two different measures show different results, eg:

"A 2010 meta-analysis of trials that measured physical activity before and after CBT showed that although CBT effectively reduced fatigue, activity levels were not improved by CBT and changes in physical activity were not related to changes in fatigue. They conclude that the effect of CBT on fatigue is not mediated by a change in physical activity."

If patients were significantly less 'fatigued', as the term is generally understood, then this should allow them to increase their activity levels. It seems unsafe to assume that the questionnaires used capture the levels of a patient's fatigue more accurately than objective measures of activity. I would recommend describing what the studies actually found, rather than just assuming that the measures used to assess fatigue accurately did so, eg:

"A 2010 meta-analysis of trials that measured physical activity before and after CBT showed that although CBT effectively reduced patient's fatigue questionnaire scores, activity levels were not improved by CBT and changes in physical activity were not related to changes in fatigue questionnaire scores. They conclude that the effect of CBT on fatigue questionnaire scores is not mediated by a change in physical activity." — Preceding unsigned comment added by 87.115.106.22 (talk) 03:21, 13 May 2013 (UTC)

We can only conclude the same things the meta-analysis itself concludes. Since they make no mention in the abstract as to how fatigue was assessed (only referring to physical activity being measure by actigraphy), we can't say anything further. If they clarify that in the full study, then it might be something we could look at. – RobinHood70 04:27, 13 May 2013 (UTC)

That paper reports using this measure of fatigue:

"The subscale fatigue severity of the Checklist Individual Strength (CIS) was used to indicate the severity of fatigue experienced by patients."

It could be that this example particularly stood out, but generally I think it would be better to report the outcome measures used as proxies for fatigue, rather than writing as if we can be confident that these proxies consistently and accurately reflect a patients level of 'fatigue'. The further we get from the evidence, the more likely it is that errors of thought or misleading assumptions will occur. — Preceding unsigned comment added by 87.115.106.22 (talk) 00:01, 14 May 2013 (UTC)

Something that clearly states that all the studies used the same scale would be better, but I think that's sufficient to warrant changing the article wording. I'll go ahead and do that. – RobinHood70 16:27, 15 May 2013 (UTC)

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