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== Simon Wessely Page == {{collapse top}} 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. [[User:Notjusttired|notjusttired]] ([[User talk: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? [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 10:45, July 16, 2019 (EDT) 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. [[User:Notjusttired|notjusttired]] ([[User talk: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? 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. <br > 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".<br> 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). [[User:Notjusttired|notjusttired]] ([[User talk: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. 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. [[User:Notjusttired|notjusttired]] ([[User talk: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). 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. 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. [[User:Notjusttired|notjusttired]] ([[User talk: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. {{collapse bottom}}
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