Talk:Simon Wessely

Simon Wessely Page (discussion moved from Njt talk page)
Wessely Page - Hi Notjusttired. I'm currently editing the page on Simon Wessely by inserting many references. Please leave the page for a moment otherwise we crosspost and I loose all the changes which is many hours of work. Kind regards, Sisyphus.
 * I've just seen your notice. I will leave alone. I am going to put some improved citations on the talk page and leave it at that. notjusttired (talk) 08:08, July 16, 2019 (EDT)

Thanks. It's ok now. The references have been inserted (It took a while). Could you delete the warning "This article may require cleanup to meet MEpedia's quality standards"? If not, could you explain which sections or claims you disagree with (for example in the discussion section of the page). Kind regards, Sisyphus.
 * I will take a look. Did you see the citations I suggested on the talk page, including the Camelford ones? notjusttired (talk) 10:45, July 16, 2019 (EDT)

Camelford
See later

I used some of them. I only briefly mention Camelford as an example where Wessely controversially pointed towards psychosocial factors in a case that isn't clear. More information about this could be posted on a seperate MEpedia page. I unfortunately do not know the details of this case, so I'll leave it to you and others. - Sisypus.


 * User:Sisyphus

Can you explain why so many sections have been removed or pretty much reverted? It was only recently changed about 3 weeks ago. It now reads as if everything Wessely claims via journalists or is in his research is a fact - even though at times he contradicts his previous statements so making it hard to know what he thinks. Eg the fact that Wessely claims CFS is part of MUS is his opinion, not a generally accept fact and that needs to be clear. In fact, one of the controversies around Wessely is him repeatedly making the claim that it can be classed as a psychological condition in the ICD-10 manual - despite confirmation from the World Health Organization that it is explicitly excluded and only classified as neurological. Including the death threats. The carefully phrased sections I added about those contesting his many claims are gone. He is known for saying one thing to one audience and something totally different to another. The links to the 3 pages of quotes complied from him are gone. I haven't seen a reason in the history or a mention of the removals or changes to the headings. Even his retirement claim is not a fact - he carried on publishing CFS research for years after "retiring". Eg police freedom of information act requests contradict that. As far as Wessely's claims of victimization go, we should be reporting "In a 2017 interview, Wessely stated that" but not in a way that suggests that it is factual. Wessely refused to appear before the UK's Gibson Enquiry which was pressing him for answers on his views. notjusttired (talk) 11:59, July 17, 2019 (EDT)

I tried to rewrite the page in full text and provide more context to his work and the controversies. I’m sorry if have deleted things without providing a reason why. Regarding the ICD, I personally think he was trying to say that patients with the symptoms of CFS can be diagnosed as having CFS (G93.3) or neurasthenia/fatigue syndrome (F48.8) and don’t see this as a big issue. If you disagree, perhaps we can make a section on this under controversies. Regarding the quotes: I am not a fan of quotes without context, certainly if it is used to criticize someone or cast someone in a certain light. That’s certainly the case of the links you mention. If you want them restored perhaps we could use them as example of criticism of Wessely rather than as an resource of quotes from him?

Death threats and Gibson Inquiry
Regarding the death threats I’m ok with restoring the info for example regarding the freedom of information request. I didn’t think this was vital because the information doesn’t permit us to make conclusions about what happened. And regarding the Gibson Enquiry if Wessely did actually get serious death threats, than I could understand why he prefers not to be questioned about the details on this. So I don't think this means much. If you insist on including more info about this, perhaps there is enough to make a separate page on this (there’s also some relevant info about this from Valerie Eliot Smith’s blog). Kind regards, Sispyhus.


 * I'm happy to have the quotes back under a heading "Quotes critical of Wessely" or similar. The classification of ME/CFS is a huge issue because it is part of his claims that it is not a disease / has no disease process and that it is psychological or mostly psychological which justifies the CBT and even GET. He refuses to acknowledge any science he does not like such as mitochondria or immune days. It's quite likely he quit research rather than having his work proved wrong. Same with Michael Sharpe, also from the PACE trial. Peter White of the PACE trial allegedly retired early from clinical practice to avoid GMC complaints that could have removed his license to practice (he was under investigation). Wessely also helped design the PACE trial - a crucial fact now missing from the top of his page. Wessely and his policies largely in control of UK treatment and has been for over a decade. Regular political questions on him and his Wessely school. Thanks to his attempts to re-classify the illness all UK ME/CFS treatment comes from a mental health health budget, he controls the media via the Science Media Centre, and gives numerous interviews making nasty persons attacks on patients. Wessely and Deale provided the key randomized controlled trial in the 1990s still used as "evidence" for CBT. The Gibson Enquiry was a scientific one, many years before he stated his death threat claims - which some have suggested are simply a way to detect from PACE trial criticism, since that's when they appeared. Absolutely nothing to fear from that except scientific scrutiny. Several Freedom of Information Act requests have shown that PACE trial critics are not harassing let alone threatening anyone. Although they tried to use this argument to prevent the release of the data.

I feel that the page re-write portrays Wessely incorrectly as mostly not controversial, and portrays his science as student accepted, and endorses his views given in newspaper interviews as accurate and unbiased. He will make claims like Gulf War Illness doesn't exist, then later claim to have originally discovered it! He's also a social security advisor and does not believe patients should be entitled to disability benefits.As regards the quotes - they come from several charities and are certainly not taken out of context. It's very hard to see how many of the statements could be out of context given how rude and nasty they often are about patients, who he calls "disgusting" and "not wanting to get better". What do you think about adding back in the references that were removed, and then working together to tackle a section at once? I think it important to be very careful not to claim Wessely has reported the truth about himself since this is often untrue or contradicted (either by himself or by independent sources). notjusttired (talk) 13:35, July 17, 2019 (EDT)

I have thought about your comments but I think we have to be neutral and objective on this. I don’t think the texts of Margaret Williams and Malcolm Hooper should be used as a basis for the MEpedia page for exactly this reason. The page already contains much criticism of Wessely. It says in the introduction that his work is controversial and has been repeatedly criticized and it already contains numerous controversial quotes of him (including the “not wanting to get better” one). Regarding the quotes out of context: I do think this is a big problem. The one about ME merely being a belief for example has been circulating within the ME community as it were to mean that ME patients are malingering, which isn’t what Wessely was saying. These kinds of misunderstandings are very unfortunate and distract from the real issues with his work. I also think the MEpedia page should not only be directed towards patients but also to outsiders such as journalists or researchers who want objective information about Wessely. So a link to a list of controversial quotes with comments mocking what he said seems inappropriate. There are plenty of blogs and articles that criticize his work or scrutinize every word he said during his career, looking for inconsistencies or poorly nuanced statements. I don’t think the MEpedia page should be another of these and instead should offer an overview of his work and career like we do with other pages on researchers. If you see further problems with the page, I don’t mind discussing it further. But I think the current version is well balanced. - Sisyphus.
 * I think the issue we are disagreeing on here is mostly neutrality. While parts of the previous page were not put across in a way that was fully neutrally totally excluding critical sources has in fact done the opposite. We can look at phrasing at the amount of text given to criticism but removing it is entirely inappropriate. I have an issue with passing off Wessely's views as facts when they are not - such as claiming CFS is part of MUS. We should not be doing that on any researcher's page. There is no doubt that Wessely is controversial - in fact he has given a number of interviews knowing that they would be controversial. "Controversial" is not a negative judgement - the Enterovirus theory is also controversial. ME itself and much of the research is controversial. The fact is his research is controversial too - after all the CDC, NHS and others followed it and the CDC and others then dumped it, plus there was the Stop GET petition too. The Institute of Medicine report disputes it. On neurality, we also can't claim Wessely invented CBT for CFS when he actually was one of 3 - Trudie Chalder has separately claimed to be the inventer. I am going to make some edits today, keeping in mind what you have said, to add in more neutral phrasing on his research "Wessely stated", in "Sir Wessely's view" etc. And add back in some references critical. While Margaret Williams and Malcolm Hooper are very critical, that does not mean they should be totally left off the page - that's not neutrality - but neither should they be emphasized. Patient groups critical of Wessely should certainly be referenced, along with Freedom of Information Act requests since they are neutral and accurate. This might mean overall that less text is critical of Wessely than before, but that there are a large number of sources supporting certain points. Part of the guidelines we are writing for is to allow others to find out more information, so we do need to either reference or link to quotes or Hooper's Mental health movement, but also any articles praising him and summarizing his contribution. If Quotes aren't used as a heading then they could go in Learn more for example. Clearly given the significant time taken to collect all these, they do have significance and may bring people to do the page who are looking for "Weasel words" - in which case they would then see an article more balanced than just those quotes. Perhaps you would like to look for those, or have some in mind.

Malingering
Re: Malingering: Wessely has said exactly that, in fact using the phrase "malinger's charter". Part of the basis of his scientific arguments is that around the "secondary gain" - his work and especially interviews repeatedly make this claim. That doesn't necessarily mean that particular quote needs including, but it is representative of his views. notjusttired (talk) 07:12, July 18, 2019 (EDT)

With all the respect notjusttired but I disagree with some of your changes and would prefer the original to be reinstated. I don’t want to use an argument of authority here, but my text does include 135 references, mostly scientific publications. I have worked many months on this and I know what I’m talking about. For example regarding the Gulf War syndrome: there’s not really a contradiction: his 1999 epidemiological study demonstrated that there was an adverse effect of going to the Gulf war that goes beyond deployed to war or being a soldier at that time period. So his study was one of the most important ones in demonstrating that the health of soldiers who went to the Gulf War was affected by something. But he doesn’t want to say there is a Gulf War Syndrome because there was no evidence for a unique constellation of signs or symptoms – the Gulf war veterans reported more of all the 50 symptoms assessed in the study. That’s his view and it’s unambiguously presented in his publications. It’s only by relying on fragmented quotes or misrepresentations by Hooper and Williams that things get obscure and that’s what I’m trying to avoid on the page. Malingering is another example. There is no evidence that Wessely thinks CFS patients are malingering. In fact he has repeatedly warned against this idea, saying “there is little evidence to suggest that the fatigue results from impaired motivation, and the use of terms such as ‘malingering’ or ‘hysteria’ is to be deplored.” (Source: https://studylib.net/doc/7895242/chronic-fatigue-syndrome). He made similar arguments about Gulf War Syndrme (see minute 50 of this lecture: https://vimeo.com/52995882).

Chalder Fatigue Syndrome and CBT
I can also attest that Wessely developed CBT for CFS: he was to first to publish about this in 1988 and to first to publish a trial on this in 1991. Chalder worked for him at the time so when she says she first developed CBT, she probably meant she was part of the team that did and that team was lead by Wessely. I highly doubt that she would contest that. She has no problem with crediting him, even about the scale that now bears her name: “I think its more Simons research than mine that we developed a fatigue scale, which is now called The Chalder fatigue scale.” (source: https://www.s4me.info/threads/13-march-2019-chalder-%E2%80%98medically-unexplained-symptoms%E2%80%99-my-clinical-and-research-journey-over-30-years.5576/page-3#post-152193) I have reread the page and don’t understand what you mean by presenting Wesselys' view that CFS is part of MUS as a fact. I constantly use the phrase “they argued…” Williams and Hooper are allready on the page, they are references as examples of criticism of Wessely’s work. And I don’t quite understand why you made a separate heading for the PACE trial: Wessely wasn’t an author of the PACE trial. It seems weird to focus on this. He has published approximately 600 papers, several books and numerous newspaper articles – most which don’t get a mention because of a lack of space. I’ve waited on editing the Wessely page until I’ve read most of his work and got an overview. By working this way I hoped to achieve a balance in attention each items receives without making the page too long. So please be mindful of that if you change things. Kind regards - Sisyphus.

"CBT is is based on a psychological and fatigue-based approach, with an expectation that exercise would normally be part of the treatment." is also not correct. In contrast to the CBT developed by Bleijenberg and Vercoulen, the CBT model developed at Kings' College does not necessarily include exercise. Instead it is focussed on graded actvity which can be increases in social activities, reading etc. Furthermore it is strange to describe it as a fatigue-based approach as it was inspired by the treatment of chronic pain. Wessely and other CBT-authors acknowledge this repeatedly.
 * Do you mind if I move this conversion to the Talk page for Wessely? We are getting into what feels like a stalemate, I think input and suggestions from others would help. There shouldn't be a question on authority here, I would like to achieve a consensus and that should be possible.

Malingering quote
One of the very difficult issues with Wessely is that he contradicts himself, and these are worth pointing out. He will claim one thing in one place and another to a different audience - "malinger's charter" is a direct quote from him which he later contradicted (just as an example). So we should be careful in claiming his view or one thing or another when he himself has contradicted it elsewhere. The new section I will respond on in a moment, with a paste from the research to clarify.


 * I recognize you have worked hard on this, but I think to make huge changes at all once causes issues for other editors. I also have worked extensively in this page, in Nov/Dec, and in March and then in June, plus on related topics recently - eg CBM model, and CBT. I too would prefer a revert to before you made the changes (!) but I think a looking towards a consensus would be a better approach. notjusttired (talk) 09:20, July 18, 2019 (EDT)

Yes perhaps it's best to move the conversion to the talk page for Wessely. Perhaps we can just copy paste what we wrote here so that others can follow our conversation? I also agree in working towards a consensus. But changes need to be carefully argued with good references (not just something someone else has claimed on a blog or tweet). I haven't seen any evidence that Wessely often contradicts himself, excepts perhaps for his statements on not seeing Ean P. Of course if one dissects everything a researcher has said or published in the last 30 years, you'll always find something. But haven't noticed clear contradictions. I'm not aware however where the 'malinger's charter' quote comes from - was this during a lecture? One option would be to add more detailed criticism and information about Wessely on a seperate page - for example 'Wessely school' and to add a prominent link on the Simon Wessely page to this one for further details on the criticism of his work, including what Hooper and Williams have written. I apologize if I deleted information you saw as important. I tried to incorporate most in the text I've wrote. I appreciate the hard work you put into MEpedia. (discussion moved from Njt talk page)


 * Thanks for your reply. I'm pleased to have input from other editors and that your also wish to work towards a consensus. I wonder if some of what I dislike is due referencing issues on old edits, and some extra references needed for new edits. I noticed you've also been picked up on referencing issues from the page. It was already a long page before I started at edits. I've addressed some points you raised below. Should one of the first tasks be to discuss the main headings and subheadings, then work from there?

re: Wessely contradictions. The more you read the more confusing it becomes, he implies one thing and then will later say stay opposite and contradict his previous research - but these can be brought up when relevant. One of his biggest critics is actually the Countess of Mar from the House of Lords and chair of Forward-ME - the collaboration of the largest UK ME charities. With references, although on the surface some are from twitter or forums, some like this are actually copies of crucial documents like the National Archives summary of a Wessely speech in this case. It may be that improving the reference to clarify this or finding the original source is the way forward. notjusttired (talk) 11:08, July 18, 2019 (EDT)
 * I would just like to thank both of you for your contributions to this page! I can imagine how frustrating it must be to try to come up with a neutral text for this page, especially when based on a consensus.  I wish I were informed enough to contribute, but “Sir” Simon is not one of my strong suits.
 * Pyrrhus (talk) 21:45, July 18, 2019 (EDT)

CBT / exercise link
The first CBT plan reference I can find is 1989, Management of chronic (post-viral fatigue), p27 states under treatment that exercise is part of it: After the initial session patients should be able to accept the proposed model as one they can work with, even if they do not believe in it. They should also haw a clear understanding of the loss of tolerance to activity and the fcar-avoidance model.

Ideally a behavioural programme should be individually tailored, with agreed targets appropriate to the degree of initial disability. However, it is likely to involve the following features: 1. Regular exercise, with which the patient can feel comfortable. 2. A graded increase in exercise, involving walking, swimming and so on. 3. Encouragement of exercises such as yoga and callisthenics. 4. Gradual exposure to all avoided activity. 5. Cognitive work to break the association between increase in ...
 * This would be reworded to "gradually increasing exercise" or similar but does not explicitly mention GET or its 10% increases. The original interview cited by Wessely did not directly mention CBT as his greatest achievement, although that can be implied, so that's why I changed it source. The 1998 "A new approach" paper didn't directly mention CBT. I will look into the Chalder quote where she credits him with creating CBT. notjusttired (talk) 11:08, July 18, 2019 (EDT)

Wessely and the PACE trial
Done

The PACE trial has become a seminal publication - MEpedia:Science guidelines due to size and influence. Hence the need for a heading given Wessely's major work on it. (Will expand with more refs) "All members of the trial management group (see below) participated in the design of the study. The treatment leaders (see below) led the treatment manuals' design"
 * He's not an author but was on the Trial Steering Committee
 * He was one of a dozen or so centre managers who helped conduct the trial by providing and overseeing treatments
 * He helped design it prior to submission for a grant (I need to look up this ref)
 * The final PACE publication thanks him for reviewing and suggesting improvements to the manuscript
 * The PACE trial was criticized for bias because it tested the theories of the authors themselves (reference to follow) - their research reputation depended on it
 * He's a director of the Science Media Centre which has been the main source for defending the PACE trial (and also "broke the story" on harassment of ME researchers - including himself - it's not neutral commentary notjusttired (talk) 11:08, July 18, 2019 (EDT)
 * From the PACE trial main outcome: "The authors thank Professors Tom Meade, Anthony Pinching and Simon Wessely for advice about design and execution.." and
 * Wessely attempting to deny involvement in the PACE trial - only disengaging after screenshots of trial publications are posted. Note original thread is Keith Geraghty's. notjusttired (talk) 13:32, July 18, 2019 (EDT)
 * Commented on an early draft of the PACE trial main publication (as stated in the report) notjusttired (talk) 19:11, July 18, 2019 (EDT)

Chalder Fatigue Scale
Done

I don't know the history on this. I thought it important to alter the heading since there's so many other fatigue scales. If I made another change in their feel free to change it back. notjusttired (talk) 11:08, July 18, 2019 (EDT)

Psychological and fatigue-based
Fixed my mistakes

I misread the paper on that - see p3 top right - it actually said the research should be psychological and fatigue based, but didn't say CBT is psychological and fatigue-based (although clearly it is). I will fix that. Original from paper notjusttired (talk) 11:08, July 18, 2019 (EDT) defined operational criteria," perhaps using our suggestions as a framework with emphasis on fatigability and psychological symptoms, onset, and course; (6) explicit infonnation on the populations from which cases are drawn—a valuable start has been made with primary care based studies; and (c) standardised instruments with proved validity and reliability for assessing symptoms.

Neurologists treating patients with derision
Removed

Moved from main page:
 * Such patients were commonly referred to neurologists, who often treated them with derision.

Reason: This is a very broad statement - in which countries? During which time period? A claim like this requires multiple pieces of evidence showing 1. most referred to neurologists (rather than ignored, sent to pain clinics, etc), and that neurologists treated them with derision in that time. The evidence was only that neurologists didn't view the illness as neurological, and is a UK survey only. It is also a UK 2011 survey - dated many years after CFS became treated by specialist UK clinics (which may have influenced views) and 4 years after the roll out of CBT. The second reference I moved to the references section for use elsewhere actually showed Wessely - not neurologists - encouraging derision by having people vote for CFS as a non-disease along side pimples and pregnancy in a "fun" medical journal poll. notjusttired (talk) 16:11, July 19, 2019 (EDT)

Other points
If you can quote sections you disagree with that would be a great help. (CBT etc done.)

Sorry I tried to post this but it didn't come through because I was temporarily logged out - I think the page looks ok, there might simply have been differences about the phrasing. I've now changed some little things. I wrote Wessely helped developed the cognitive behavioral model (CBM), instead of also mentioning the other authors of that first paper (I think some of them didn't continue working on this). I've added references for how UK neurologists do not take CFS seriously. I've added a critique of the countess of Mar as a reference. I've added a sentence about criticism of MUS. I've relocated the PACE section under the CBT section and included that Wessely is a trustee of the Science media centre, which has defended PACE. I've added a sentence in the CBT section "This usually involves a gradual increase in exercise such as walking or swimming." and rephrased the beginning. Feel free to say if you disagree or if you see other sections on the page that need to be changed.
 * Was this User:Sisyphus posting? I've also had intermittent issues finding myself logged out - or appearing logged on when another tab says I'm logged in.
 * I saw your changes today and thought they were good. :-( I don't think the references are quite right for the neurologists so I moved them into the talk page. I think there's a difference between them being unhelpful / not interested / not knowledgeable and regarding it as not really their field, and perhaps bring dismissive / disinterested and derision. I'm also unsure if most people did go to neurologists, or if it was a mix of neurologists, neurologists, and PCP / GPs.
 * With the talk yesterday I think we were talking at cross-purposes, you were talking about the Chalder Fatigue Scale being mostly Wessely, and I was talking about him not being the only one developing the CBM and CBT for CFS. I think we are agreeing basically. (I also think I saw something recently that might clarify more on the CBM though).
 * I renamed 2 headings today and wondered what you thought on that.

CFS as illness without disease
I think it's worth having a "CFS as a non-disease" heading since that is one of the key points that causes an issue - "illness without disease" being the MUS model and also fitting the CBM too. "Response to criticisms" or "Main criticisms" might be worth of a heading under controversies. It would be the place to (very briefly) reference the many sources of quotes. Wessely is so frequently quoted as claiming that patients have mental health stigma and that is the issue, but actually that's his way of distracting from greater issues. I think we are moving in the right direction. User:Pyrrhus thanks for the encouragement. notjusttired (talk) 19:40, July 19, 2019 (EDT)

Yes, I posted the comment above. I agree with the changes you introduced, such as deleting that sentence about neurologists' derision and changing some of the headlines (just deleted 'atypical' before depression in the headline). I don't know if 'CFS as a non-disease' is a good one though. It' might be confused as being his view which I think wouldn't be entirely correct. He thinks CFS patients are really ill, it's just that he mostly has a psychiatric etiology in mind. He has defended the construct of CFS against people like Showalter. He might think it's not a disease but that's mostly because he thinks CFS is heterogeneous, much like hypertension. There's already a section on his view on ME - where he thinks this label and its campaigners are doing more harm than good so to say. What content are you thinking of for a 'main criticism' section except for the quotes? I see that the 'Learn more' section consists mostly of criticism of Wessely. So perhaps we can change the title and turn that into an overview of criticisms of Wessely where the link to his quotes can be included? - Sisyphus.

I already gave it a go. If you don't like it you can delete it and reinstate the previous version. It's just a suggestion. - Sisyphus.
 * Disease has a specific, scientific meaning but illness has a different meaning. He's basically claimed there is no underlying disease process - and I think it was him he used the term "illness without disease". The scientific meaning for the word "Syndrome" as in Fibromyalgia Syndrome or CFS means a collection of symptoms often found together. It does not suggest an underlying disease process. The ICD classification is of a neurological disease - there if a separate "Signs and Symptoms" category for anything that may not have an underlying disease process. This is significant because according to the rationale of the cognitive behavioral model, and the justification for  CBT and GET, there is no possible underlying diaease in the model - which means of that model were correct, those treatments would be cures. They are both rehabilitation treatments - yet if there's an untreated underlying disease, as we know there is through Immunology evidence, autopsies etc, you can't expect a rehabilitation treatment to be much use - it's like rehab for a broken leg without setting the leg first. Imagine doing rehab for heart disease, without treating the heart disease. Wessely nominated CFS as a "non-disease" for a poll in the highly influential British Medical Journal. I will find some references on this, but the significant might escape some. It's best understood through looking at the diagrams explaining CBM vs biomedical models. BTW: Showalter who you mentioned above is Elaine Showalter, not a scientist but an opinionated writer / English literature academic. Wessely will defend CFS because it's his funding source (and I think he accepts it as an illness), but then alternates between saying CFS and ME are the same and claiming ME doesn't exist. A frequent pattern for Wessely is to claim no disease but that the people are sick and he knows how to treat them - Gulf War Illness, Fibromyalgia, ME/CFS - the many physical abnormalities don't matter, the degree of disability is minimized and people's reality is questioned. They are accused of being "motivated" to remain ill and that neglecting their medical needs and denying access to disability payments will "help" cure them. This is the psychosocial approach - he claims his approach is biopsychosocial but actually he suggests no medical tests, never recommends medication and blames everything biological on psychological or social causes (social = benefits, help from others). notjusttired (talk) 19:07, July 25, 2019 (EDT)

Sorry for my late response. I think we should be careful not overstating things. Disease usually refers to demonstrable pathology and most experts agree that the pathology of ME/CFS is currently not or poorly understood. The WHO is much more careful in its statements about ME/CFS than you suggest. Regarding the new ICD-11 it made the following comment: "Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time. Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter." See: https://www.s4me.info/threads/updates-on-status-of-icd-11-and-changes-to-other-classification-and-terminology-systems.3912/page-9#post-123205
 * Thanks for your comments. I'm entirely in agreement with the ICD statement above. Medically "disease" does not mean contagious / infectious or suggest any cause at all. It means there is an underlying disease process. I will check the medical definition to be clear. I believe the WHO classification may be linked to earlier research incision post mortem findings involving brain and spinal cord abnormalities, which are uncontested.

If you can explain what you understand by "disease" rather than illness that would be great. I think to include this needs explanation - absolutely don't want anyone to misinterpret the meaning. ICD-11 classification is the same. This is significant because on many occasions Wessely has attempted to claim it can be classified elsewhere, as non-neurological and not a disease. See:
 * The WHO classification is under VI Diseases of the nervous system, then Other disorders of brain (reflecting that much is not yet known so can't be grouped in with others yet)
 * after some investigation I found that illness not known to be linked to a specific disease / medically unexplained symptoms are classed in the Symptoms category "Signs and symptoms - which also has a "nervous system" subcategory - Fibromyalgia is in Signs and Symptoms at present.
 * this model for no disease process - all impairment is shown as the result of things under patient control, with all biological symptoms except the initial fatigue resulting from boom and bust behaviors, meaning without no underlying disease and according to this theory totally reversible by psychotherapy and behavior changes. The biological model instead - not supported by Wessely - shows IO&NS pathways and a disease process only partly influenced by patient behaviors like exercise or stress. The metabolic trap hypothesis is also about an underlying disease process. notjusttired (talk) 13:21, August 7, 2019 (EDT)

Do you have a link that Wessely nominated CFS as a non-disease
I thought he simply commented on that BMJ poll. See: There's a number of different sources for this, besides the poll, but every time he claims it's Neurasthenia that is what he is saying eg Old wine, new bottles. Will find some sources below. Calling CFS a "functional somatic syndrome" and the same syndrome as fibro and IBS is part of this since he does not recognize that the disease process exists in any of these notjusttired (talk) 13:21, August 7, 2019 (EDT)
 * https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122847/

"Similarly, functional somatic syndromes refer to groups of symptoms lacking disease-specific, demonstrable abnormalities of structure, and are usually defined by specialty or organ system.1 They include irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, chronic pelvic pain, temporomandibular joint dysfunction and more recently Gulf War syndrome." "WHY DO WE NEED CRITERIA FOR THE CHRONIC FATIGUE SYNDROME? The need for criteria for the chronic fatigue syndrome comes from two sources. The first is the research community. Without criteria, meaningful comparisons between studies become impossible, and the introduction of such criteria has been a prerequisite for the cur- rent research effort. But we must not forget that our operational criteria for something we call “the chronic fatigue syndrome” is just that—operational criteria to allow research to be done. The existence of the criteria does not mean that there is a disorder that corresponds to the criteria. The criteria operationalize, but they do not reify. The pressure to reify the chronic fatigue syndrome also comes from the way in which the developed world organizes medical services and reimbursement systems. There have always been sound financial reasons for each medical specialty to develop its own unexplained syndrome, one that its practitioners alone are qualified to diagnose, manage, and bill for (34)."
 * Chronic Fatigue Syndromehttps://doi.org/10.1038/npg.els.0002207 Full text - see summary
 * What do you think is a non-disease?: Pros and cons of medicalisation Full text
 * UK Parliament discussion on Wessely's article and BMJ poll
 * Chronic fatigue syndrome: An overview Full text - claims no biological abnormalities exist in CFS - despite huge amounts of evidence including the IOM report (not published at the time) -
 * he was part of the working group of the influential Joint Colleges report, p5 states: "The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors” (Joint Royal Colleges Report on CFS, October 1996)" Full text
 * Chronic fatigue: symptom and syndrome Full text - claims it is just a label for whatever is unexplained rather than a specific illness -

Removing cleanup tag
I have had another look at the MEpedia page on Wessely and did some more changes for readability. I've changed the PACE section a little bit because wasn't a call for retraction on virology blog but for an independent reanalysis of the full individual patient data.I think the page looks fine now and no longer deserves the 'requires cleanup' tag. Could you please remove it?
 * I would like to check over a fee more bits first (might be wording that's been there a long time) I did some minor improvements to MUPS earlier notjusttired (talk) 13:21, August 7, 2019 (EDT)

A general remark I would like to make: In my view, it is much much more problematic to overstate claims or criticism than to understate or overlook them. One can make harsh criticism explaining the problems with Wessely's research elsewhere on blogs on forums, but the MEpedia should try to be neutral and objective. - Sisphyus.
 * I think the page is much improved, but that the accusations of abuse heading needs to go back, along with lack of evidence of this. A criticisms section may be useful, but I'm not sure on this. notjusttired (talk) 13:21, August 7, 2019 (EDT)

content to consider merging back into page
notjusttired (talk) 13:54, July 17, 2019 (EDT) Previous content link

Complied by charities and advocates critical of Wessely.
 * 4.1 Accusations of abuse
 * 4.2 Evidence of abuse and threats
 * 4.3 Accusation of "blocking research"
 * 4.4 Accusations of poor quality research
 * 4.5 Camelford water supply contamination
 * 4.6 Past beliefs of stress in Gulf War Illness
 * 4.7 Scotsman retracts article criticizing Wessely
 * 4.8 Negative stereotyping and comments about patients with ME/CFS
 * 4.8.1 Denigration by Design Update (Vol 2): A Review of the Role of Simon Wessely in the Perception of ME 1996-1999
 * 4.8.2 The Mental Health Movement: Persecution of Patients
 * Quotes by Simon Wessely

Original content  Added for reference - Njt Aug 8, 2019

Accusations of abuse
Professor Wessely stated in summer 2011 that he had been the subject of abuse and threats of violence by patients objecting to his research. Professor Wessely claimed in an interview that research into CFS/ME made him feel unsafe, stating that specializing in the problems of war veterans "I now go to Iraq and Afghanistan, where I feel a lot safer."

Evidence of abuse and threats
In 2017, King's College London, Sir Wessely's employer, received a Freedom of Information Act request asking if any King's College had a record of any "substantiated claims of harassment of allegations of threats" to staff, which King's College refused to disclosure, claiming this information was exempt from from FOIA disclosure.

In 2012, the year after publication of the PACE trial, King's College London responded to a Freedom of Information Act request stating it held information on threats to Simon Wessely from "a range of individuals". The college refused to confirm or deny whether it has a record of Simon Wessely taking private legal advice about the alleged intimidation or whether he had reported any to the police, but the response implied that legal advice had not been provided by King's College London.

Accusation of "blocking research"
Dr Ian Gibson has criticized Professor Wessely's purely psychological approach to the disease.

Accusations of poor quality research
In 2000 Wessely & fellow researchers were accused of "unsupported conclusions derived from faulty analyses", and responded that "we've been attacked by gremlins" who changed the data on their manuscript. This was later revealed to have been happened at the BMJ, although Wessely was criticized for not keeping the original manuscript or data.

Camelford water supply contamination
In 1988 the public water supply in Camelford in England was accidentally contaminated with aluminium sulfate. Professor Wessely published a paper in 1995 playing down the effects of the pollution and suggesting significant psychological factors were involved. The government formally and unreservedly apologized in 2013, 25 years later, to those whose health was affected by the water supply contamination.

Past beliefs of stress in Gulf War Illness
Professor Wessely believed that stress was involved in Gulf War Illness, with an long-term psychiatric paradigm research and public view on it.

Scotsman retracts article criticizing Wessely
In 2003, Dr Margaret Cook, a hospital consultant, wrote an article in the Scotsman newspaper entitled ME sufferers have found an enemy in Wessely – so they need friends, which was quickly retracted.

Negative stereotyping and comments about patients with ME/CFS
Sir Simon Wessely, in an interview for the highly influential BMJ, referred to patients with ME/CFS, stated "[w]ith these people, it isn't that they don't want to get better but if the price is recognising the psychiatric basis of the condition, they'd rather not get better". A number of patients and some patient organizations have been critical of Sir Wessely's views and have highlighted certain comments made by Professor Wessely, including sections of his published academic writing, and summarized them.

Denigration by Design Update (Vol 2): A Review of the Role of Simon Wessely in the Perception of ME 1996-1999
Written by Margaret Williams, this contains many quotes by Simon Wessely, including some from his research or interviews, and highlights many of the generalized comments that Wessely has made about criticizing patients with Chronic Fatigue Syndrome, including his agreement with negative comments made by other professionals, and his views that CFS is neither a serious nor a disabling condition.

The Mental Health Movement: Persecution of Patients
Professor Malcolm Hooper's report, subtitled A consideration of the role of Professor Simon Wessely and other members of the "Wessely School" in the perception of Myalgic Encephalomyelitis (ME) in the UK was written as a briefing for the UK government’s House of Commons Select Health Committee. The Mental Health Movement: Persecution of Patients describes how Simon Wessely, psychiatrists of the Wessely school and a few other professionals have "denigrated" patients over a long period of time, presenting patients as manipulating others for "secondary gain", and Wessely's attempts to re-classify myalgic encephalomyelitis as simply a fatigue condition called chronic fatigue syndrome, presenting it as a psychiatric rather than physical, neurological condition–even misusing the World Health Organization logo and incorrectly presenting the WHO classification of ME/CFS to do so.

Science Media Centre
Consider new heading for this notjusttired (talk) 14:03, July 17, 2019 (EDT)

Pace trial in intro
Serving as an advisor to the PACE trial investigators, Professor Wessely has defended the PACE trial, stating "this trial was a landmark in behavioral complex intervention studies."

New references

 * "cleave at the joints" quote from Wessely, Simon White, Peter D. Cannon, Mary (Ed) McKenzie, Kwame (Ed) Sims, Andrew (Ed)
 * 2004, There is only one functional somatic syndromehttps://psycnet.apa.org/doi/10.1192/bjp.185.2.95 (Full text)

2013, Camelford water poisoning: Unreserved government apologyhttps://www.bbc.co.uk/news/uk-england-cornwall-24164253 2018, Camelford water poisoning: Calls for new inquiryhttps://www.bbc.co.uk/news/uk-england-cornwall-44727036 notjusttired (talk) 09:13, July 16, 2019 (EDT)
 * Nuimann citations to link to Chaichana Nuimann page
 * Camelford - add Wessely's paper for "the most likely explanation" quote
 * 1995, The legend of Camelford: Medical consequences of a water pollution accidenthttps://psycnet.apa.org/record/1995-45677-001 (Abstract)
 * New refs for Camelford - disputing Wessely's anxiety theory
 * 1993, Camelford water poisoning accident; Serial neuropsychological assessments and further observations on bone aluminiumhttps://journals.sagepub.com/doi/abs/10.1177/096032719301200108 (Full text)
 * 1999, Disturbance of cerebral function in people exposed to drinking water contaminated with aluminium sulphate: retrospective study of the Camelford water incident https://www.ncbi.nlm.nih.gov/pmc/articles/PMC314205/ (Abstract)
 * Inline citation without link - [31] about Camelford water supply - correct this
 * news - Camelford compensation and apology,

New section suggestion
Bullet points - possibly using Wesley's quotes, linking to how this saves the UK government money

Denial and downplaying of physical or mental illness

 * Post-traumatic stress disorder
 * Gulf War Illness
 * Chronic fatigue syndrome as a metaphor
 * Fibromyalgia
 * Camelford water supply poisoning blamed on anxiety, leading to the death of Carole Cross, UK government paid compensation, then apologized in 2013

Tidy up
The citations & references need to be tidied up. SW (the other one)



Simon Wessely Tweeted "Tomorrow is a good day for those interested in links between immune system and psychiatry - @BBCr4today then @BBCRadio4 "Inflamed Mind' 21.00".

The broadcast Inflamed Mind looks into a valid diagnosis of brain inflammation causing psychosis and anti-inflammatory drugs helping. They are now hypothesizing some depression can be caused by brain inflammation. My opinion: Wessely is doing all he can to make ME/CFS's brain inflammation depression.

ME/CFS patients have inflamed brains. Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder.

This will be the UK Psychiatric Lobby's next misdiagnosis of a valid ME/CFS symptom of brain inflammation, making it depression and keeping control of the disease, ME/CFS. He is not interviewed however you can see his next venture into our disease along with Suzanne O'Sullivan going on her book tour to ELLE Magazine with the acronym PVFS.

And you know UNUM will love this as much as the PACE trial.

The broadcast is probably up for 30 days from August 24, 2016. I will see if I can get a transcript.

http://www.bbc.co.uk/programmes/b07pj2pw

--DxCFS (talk) 10:41, 25 August 2016 (PDT)

In 2016, Jose Montoya and Michael Zeineh have published that they have found 3 areas of the brain in CFS patients that differ from healthy patients. --DxCFS (talk) 14:35, 27 August 2016 (PDT)

Wessely's opinions
Please use at least 3 sources for Wessely's opinions, because they change so much we want to make sure what we Cite is accurate. For instance, we do know he doesn't regard ME/CFS as a neurological illness. He also is known for making false assertions, as in Michael Sharp. Typical false assertions include claiming CFS can be classified either as a psychiatric or physical illness in the ICD, which the World Health Organization has corrected him on, claiming that opposition to his work is based only on the assumption that his treatment / approach regards the illness as psychological - and assertions about the personality of people with CFS that are contradicted by his own research, and others which are simply ad hominem attacks (claiming CFS patients want to avoid the stigma of a mental illness are entirely without anything to back it up).
 * "There is great dispute over the findings and beliefs of Professor Simon Wessely. Many patient groups believe Wessely and his colleagues are responsible for maintaining the perception that ME is a psychosocial illness.... There is conflicting evidence available regarding Wessely’s true opinions. The Group invited Wesseley to speak at an Oral Hearing, however he declined the offer and sent his colleagues Dr Trudie Chandler and Dr Anthony Cleare... Wessely did not submit a written piece to the Inquiry, however in a letter to the Inquiry he did set out his belief that CFS/ME has a biological element which needs further research and investigation.
 * Claims Wessely has made about third parties or his other opinions risk biasing the page if we quote them without checking if they are true, or without checking if they are a consistent view . notjusttired (talk) 18:08, July 25, 2019 (EDT)

Thanks for your explanation, but to be frank this is all basic stuff which I know very well. I've just written an extensive summary on Wessely with more than 150 references. Most of the references you used are already on that page. From the document of the Countess of Marr, it is not clear to me that Wessely had any role in the design of the BMJ poll. What she says is consistent with what I had in mind: that BMJ organized this offensive poll and that Wessely wrote a letter, commenting on the results for ME/CFS.

I also don't agree with the recent changes you've made. I've checked and the Huibers & Wessely reference (https://www.ncbi.nlm.nih.gov/pubmed/16403245) on CFS being a mirror of society is correct and contains all the quotes. I did make some spelling errors (English is not my first language), so please be free to correct those - but I don't think a cleanup tag is necessary in such cases.

Thanks for checking for duplicates and mistakes in the references, but I disagree with the changes on the epidemiological study. The title says it was also on chronic fatigue, but all CFS epidemiological studies have such data because that's how they select the CFS patients. I think there were already prevalence studies of chronic fatigue, but no goods ones on CFS. And that's what makes Wessely's study important historically. The fact that he found no economic gradient also is (it was confirmed by Leonard Jason's study). I'm also confident that the sentence about selection bias is correct.

Regarding Wessely's view that he thinks there is no disease process, that's possible but it's difficult to find a quote where he expresses that view. He's very cautious in that regard and I think it's important not to overstate criticism in this regard. Claims that no pathology in ME/CFS has been found is not that controversial - that usually requires independent replication in large samples something that hasn't been done yet in ME/CFS. People like Jonathan Edwards (on S4ME) would probably agree with Wessely on this point. So Wessely isn't denying any evidence, he's simply on the sceptical regarding biomedical findings, as are others who do think ME/CFS is a neurological illness. I think the WHO statement on ME/CFS also reflects that view. - Sisyphus.

Cleanup progress
I will need to respond to your comments above tomorrow since my brain is too foggy now. I apologize if I made an error checking references. With the spelling I highlighted - I would have changed it but could not be sure what it was so thought it best to ask. I am adding some comments that look like this  - unlike the cleanup tags they are invisible to those not signed in, and they are simply to help me remember where I am up to. I have read / checked to the end of CBT. I hope you can see I'm aiming for neutrality but felt it essential to add a 5 year follow up study of the same one cited (also by Wessely) since it is significant if a study has an initial positive result but null later (treatment may speed up recovery for instance). Also CBT trials were never all positive - even before Wessely there were some null results eg Lloyd 1993 in Australia. I felt it read that CBT was only questioned later, when the evidence was mixed from the start (more positive than null, but many BPS proponents returned null results). The 1997 Deale and Wessely study was a huge influence in the UK (see new reference from Centre for Reviews and Dissemination - actually an NHS review) - it was the highest rated for quality in that review. I am 'not sure if to mention that Deale and Wessely 1997 found 12% were misdiagnosed at long ten follow up - relevant to the Oxford criteria so may be best there. 'Epidemiology - I feel we may be downplaying it a bit since it's the first UK one I believe - and it assessed by multiple case criteria, and separately assesses idiopathic chronic fatigue - see page 5 - so that's why I felt it important to point that out, as well as pointing out that the % given is for the Fukuda criteria (perhaps it might help to also quote the idiopathic chronic fatigue rate too, for clarity?). Concerns 
 * "Wessely and colleagues stated that there’s a large overlap in case definitions of these illnesses and that patients often meet multiple diagnostic criteria" - this is a contested point, patients have been shown to have comorbidities in many illnesses, and symptoms are not overlapping much except in the weakest criteria - I would like to either rephrase as Wessely's view or add in evidence against the view, Wessely is against scientific consensus here
 * "as his team indicated that there was no such health effect with soldiers deployed to the Iraq war" - This is a disputed point and not a fact, how to rephrase? 
 * "According to Wessely “there is a considerable degree of iatrogenesis in the rise of these conditions. I am concerned people don't understand what iatrogenesis / iatrogenic means
 * PACE trial - thank you so much for pointing out it's not a call for retraction - I misinterpreted it. Hugely grateful to your knowledge on that.

I feel things are certainly moving in the right direction. This would be much easier without the brain fog. I had actually not realized that you were not a native English speaker! If you are interested there's now some Userboxes if you want to add language info to your user page or special interests. :-) notjusttired (talk) 22:34, August 7, 2019 (EDT)

I'm not used to working in the 'editing source' mode, so apologies if my comments on this discussion section appear on the wrong places. I'm not so sure about the changes on the CBT-section. For example, now it reads that the Deale et al. 2001, 5-year follow up reported null findings, but that isn't the case. It used composite outcomes of improvement and reported the follow-up to be a great success. It reads: "Significantly more patients receiving cognitive behavior therapy, in relation to those in relaxation therapy, met criteria for complete recovery, were free of relapse, and experienced symptoms that had steadily improved or were consistently mild or absent since treatment ended. Similar proportions were employed, but patients in the cognitive behavior therapy group worked significantly more mean hours per week." It's only when you look at the tables, that one sees that the outcomes of fatigue and physical function themselves were not significantly better in the CBT group, as Vink reported in his review (I suppose you got the info from there). Also: The CDC no longer advises CBT on their website, so it might be confusing to mention them.

I think one should be careful not turning each section where the page explains Wessely's view into a discussion of that subject where you invoke as many criticisms of Wessely's view as possible. All I wrote on the page was: "Other researchers have reported similar findings[58] and CBT has been recommended as an evidence-based treatment for CFS by several health authorities." - which seems rather uncontroversial. I see no need for citing individual studies that did not find good results for CBT as criticism is mentioned in the section below. Almost all of the CBT-trial reported positive findings one way or another, only Jason et al. 2007 seems an exception. The early ones of Lloyd et al. 1993 and Friedberg & Krupp, 1994 also found null results but they didn't use the fear-avoidance model Wessely and colleagues developed. Pretty much all other CBT-trials reported positive outcomes for CBT (and so did all the reviews except for the one of Vink & Vink-Niese from this year). So I don't see the relevance in mentioning the few trials that did not find a positive outcome - It's not an overview of CBT but of Wessely:I wanted to explain how the CBT-version he developed became recommended by health authorities such as NICE.

Regarding the other concerns: when the page writes "Wessely and colleagues stated that..." or "his team indicated that..." I think it's already pretty clear that this not presented as a fact but as what Wessely and his team are reporting. Again, I don't think we need to try to add criticism or debunk each of the standpoints Wessely makes. MEpedia or Wikipedia wouldn't do that for pages on other people. - Sisyphus.