Talk:Michael Sharpe

Old links
backup if removed in future https://web-beta.archive.org/web/20160123014124/http://www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296

https://www.youtube.com/watch?v=HnZd4-X3lEE

https://www.youtube.com/watch?v=U0_8eVl99zs

https://www.youtube.com/watch?v=_PuGKWIXWdQ

Bio?
I thought this page was a bio? If a separate bio page is needed can one be created? I can't see where it would belong.

I feel the quotes are relevant here in adding to the description of how he views the illness.

Some quotes could be added to the List of quotes page

Notjusttired notjusttired (talk) 11:24, 3 December 2018 (EST) - These quotes could be incorporated in bio instead of a separate section.

Quotations

 * 2015, "It’s sometimes quite hard to understand what motivates the very vocal minority that gets so upset about this apparently benign bit of moderately helpful treatment."
 * 2015, "These are not magic cures. This is just the only game in town really in terms of an evidence-based treatment if you have got this condition to get yourself improved."
 * 1999, "Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the 'reality' of their condition (and who) are in this sense undeserving of treatment...Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service" Problems and Solutions ? - Eileen Marshall and Margaret Williams 23rd February 2005
 * MEActionUK Quotes from Mike Sharpe

=Awards= Worth adding in my view
 * Professor Sharpe has been named as Psychiatrist of the Year at the Royal College of Psychiatrists Awards Ceremony in London
 * Academic Psychiatrist of the year

=Large update of the page September 2019=
 * Hi User:Sisyphus. Thank you very much for tagging me and thank you for your incremental, methodological approach to updating this page.  I'm afraid I won't be of much help here as Michael Sharpe is not one of my areas of expertise.  (All I know is that his "undeserving sick" comment might have been a misinterpreted ironic allusion to a Victorian-era concept.)  But many thanks for all your hard work and all your contributions!
 * Pyrrhus (talk) 20:57, September 9, 2019 (EDT)
 * No it's not been misinterpreted, and Sharpe has repeated it a number of times and defended it despite strong criticism by patients. Sharpe claims it's a quote from a book, but the book quote is different (which has been pointed out to him). It is part of a pattern of attempting to deny medical care to patients by attempting to portray them as not very ill / disputing and minimizing their illness. Repeating a quote you know is offensive to patients is a deliberate act.  notjusttired (talk) 18:38, September 10, 2019 (EDT)

Undeserving sick quote controversy

 * This has become so notable that it should be covered in controversy. Possibly under denigration (of patients, not critics). fumblings blog (which Sharpe commented on about this. "It seems odd therefore, given your professed sympathy with those with ME/CFS, that you chose to highlight their plight with reference to a rather self-pitying monologue, which represents the voice of someone with a conscious wish to perpetuate his own poor state as a vehicle to personal gain."
 * Despite writing a response on the blog, which describes the "undeserving poir" source of the quote as being someone lazy abs describing himself as poor because of his own choices - he then denies involvement with UnumProvident (followed by listing some of his involvement) and denies viewing patients as undeserving sick (which I think should be referenced. source - multiple comments notjusttired (talk) 20:02, September 10, 2019 (EDT)


 * There is no controversy as far as I can see, just some people who misrepresented Sharpe's quote because they are unfamiliar with his work. One of the main themes in his publications is that patients in whom no objective pathology can be found and do not have (or want) a psychiatric diagnosis are being overlooked by the current medical system. He thinks he is standing up for these patients by arguing that doctors and researchers should take symptoms seriously regardless of pathology and he is frustrated that CFS patients do not join him in this plight but instead try to argue that there is objective pathology in ME/CFS and that recognition of this is important for the recognition of ME/CFS. But to be honest even if I hadn't read his work, I would still interpret the out of context quote as Sharpe condemning this situation rather than claiming that CFS should be regarded as the undeserving sick. In my opinion, it's very unfortunate that people keep repeating these irrelevant and false claims about Sharpe, Wessely and others as it is damaging to others who are trying to point out the real problems with their work.--Sisyphus (talk) 07:33, September 11, 2019 (EDT)

Locking the page
User:Sisyphus I appreciate being tagged. It is not OK to exclusively edit the page, since that prevents collaboration. A cleanup tag should be used if citations are missing, but please add what's missing after each paragraph / section rather than leaving large sections unreferenced. The cleanup tag can be used to highlight which sections it refers to. I've added the cleanup tag but you may want to move to the relevant section instead. notjusttired (talk) 18:38, September 10, 2019 (EDT)

notjusttired The note was there because I was inserting the references. I already have them before uploading my text, it just takes a while to insert them all. You have requested me to first work in the discussion section before doing any changes, but I think it shows that this is not a productive approach. I have all the references for the text I propose below it's just much harder to insert them in an orderly way. Most of the comments you make are about not having access to these references to check things.

I think it would be much easier if I upload the things I have in mind on the main page so you could comment on that. If I made mistakes or important omission you can point them out here and If you're right or I can't answer them I would be happy to help restore the older version so that this doesn't cost you too much energy. Since all versions are automatically stored, I don't think there's a danger of losing any information. If there was a large text with dozens of references on the main page and I changed or deleted it drastically, then I would agree that trying to contact the person(s) who wrote it and discuss some things on the talk page would be the best approach. But the information on all the pages I've worked on recently was relatively limited and I retained most of it. In the case of the Wessely page I didn't explain the changes I made in the discussion section. That was a mistake of me and might explain why we got off on the wrong foot. I will try to explain any changes I make in detail in the discussion section from now on. But working out and discussing the text in talk section first doesn't seem effective for the reasons described above. So I will now insert the changes I propose on the page for Michael Sharpe, as this will make it easier for us to discuss them. I'd be happy to help out of things need to be restored.

Finally, you say that "It is not OK to exclusively edit the page, since that prevents collaboration" which I don't quite comprehend. As I understand it this isn't how most editing works on MEpedia, so I don't see why things would need to be different for me. The page on Sharpe has been there for a while. People can add information on it if they like to work on this. I've worked on it because there wasn't much on the page about his work and career and I have read a lot about this over the years. If people see any mistake or ommissions in my text they can correct it or point it out in the discussion section where they can tag me. I don't see why I have to set up a collaboration with someone if I want to edit a page.

The thing I do differently is that I focus on a subject in depth before adding info on it on a page. I understand that could make it difficult for other editors to check that info but I believe it is the right approach for achieving high accuracy on a controversial subject (to first get a comprehensive overview). I hope to have build up some credit from previous pages I did. I will surely make mistakes like anyone else, but I try to be careful for example by using direct quotes and using references for every statement or claim. Most of the criticism you have made is about not being harsh enough on the researchers or that I try to make the text more neutral and balanced, not that I'm making unsupportive claims or overstatements. So I hope that indicates that I'm cautious about what I write. --Sisyphus (talk) 06:26, September 11, 2019 (EDT)
 * Thank you for replying. Every time you do another huge series of edits without discussion I consider reverting the lot to be honest because I can't follow the reasons and/or I think there are incorrect statements, so I think I will do a revert as you suggested. For me it's actually ackward to do a side by side compare of large changes because they are hard to read or scroll on a tiny mobile screen - although small changes are easy. I was annoyed by your suggestion that talking about large changes is a bad idea though, when it's exactly what is needed here. I don't follow what you mean by thinking that others look the page with a "don't edit this" message - it's not something I have seen before and certainly not what others should be doing. I really am discouraged to hear it's happening elsewhere. This is a collaborative skill - but to be editing also basic manners. What if someone else wants to update the page while you have that message up, or your want to do a change but someone else locks the page for days? Or is the only page you have an interest in editing? Many of us just do small tidying up edits or only edit when we can manage so coming back another time often means that unfortunately it doesn't happen at all. Try looking at it this way - why should you have priority over other editors? How can we possibly manage that and how it that fair to others, including new editors? The only priorities here are user rights and everyone has the same right to edit almost all pages (with a few key pages like editing guidelines or configuration restricted to frequent editors - like yourself - or admins). It doesn't make sense for a few editors suddenly be seen as exempt from the normal processes simply because they have done the same thing before or because they edit a lot. Please reflect on what you are suggesting and how it would feel to be on the receiving end. Wikis including this and Wikipedia work by collaboration and agreeing. If you did try this on Wikipedia or most large wikis you would find your edits reverted and most likely the edit warring - which fortunately is something that is rare here. When you make these changes it is a huge amount of work to many of us to read all the new content and that takes time and thought. So you might not get feedback the next day, and of course there will be more questions if people don't know which references you are using. If you could use the talk page - or your own user page - to copy and paste from the source version you could not lose the original references to start with. The Visual editor can be used on your user page which would save you a lot of time, you can also create subpages in your user area to separate things from messages (see User:Kmdenmark for examples). Another way to do it is to make changes but instead of saving just copy and paste the entire content to a new section on the talk page - which will grab the references for you. It really does make things so much easier when everyone follows the editing practices that have been established and have worked well for us. If you wish our policies / processes to change in this way then User:JaimeS haa overall oversight, and User:JenB founded MEpedia so it should be discussed with them, or use the talk page to suggest changes, improvements or additions. I do do appreciate your work here and your efforts in editing and hope we can find a way for things to work more smoothly notjusttired (talk) 08:19, September 12, 2019 (EDT)

- There seems to be a misunderstanding here notjusttired. I had simply put up a note to avoid cross-posting. I was inserting a lot of references and that takes a while. If someone else jumps in and starts editing the new text (for example inserting internal links) than I or he/she might lose our work because of cross-posting. I’ve lost several half hours of work because of this in the past. In fact; we had a similar situation on the Wessely page! I was inserting the references, then you did a minor edit on the page and I lost a half hour of work. So I added a note that I was working on the page and to leave it for a while to avoid cross posting and you responded “I've just seen your notice. I will leave alone.” The note on the Sharpe page was on there for less than a day and I’ve never put up a note like that for a longer period. I wish I could insert the references faster but it’s literally hours of work and I’m too ill to do it in one go. From the things you say about me, other MEpedia editors might get the false impression that I did something else, like preventing others from editing a page! I hope you’ll admit that this was a misunderstanding on your part and that you’ll clear out the confusion. --Sisyphus (talk) 16:26, September 12, 2019 (EDT)
 * Phew. Thanks so much. When there are so many references I try to make the new ones with  to avoid problems with the numbering changing as the page is edited. I'm going to go back and try to name some to help with this - it will take a number of small edits. Are you OK to discuss headings before going further? And have any old headings line Freedom of Information Act requests put back in for the time being (although this may duplicate some info). notjusttired (talk) 13:29, September 13, 2019 (EDT)


 * I don't think I'll have a problem with headings being changed. The main reasons why I changed some of them was because there were so many of the same subheading, it was confusing to read. So I tried to put some structure into them. Another reason was to use less subjective and more neutral descriptions. I rather make an understatement than an overstatement on MEpedia. But perhaps you should have a go and make some edits to the controversy section, so I can see what you have in mind. There is no rush, so no problem if it takes a couple of days to do so. --Sisyphus (talk) 18:15, September 13, 2019 (EDT)

Added information on his research
Hi all! I'm planning to do a large update of the page and include more information about Sharpe's bio and his research. I'm currently adding this information on the page but without deleting the information that is already there. Perhaps it is best to reserve this section to discuss this added information and whether there are any mistakes in it that need to be corrected. - Sisyphus.
 * Thanks for the tag. I've added some comments and an odd reference. Added words of mine are in bold, no doubt some changes I'm suggesting are will be about the original martial that yours is based on. It would be much easier if you could copy from Source editor though, since we could see what references are being used. The reference numbers will change as the page is edited. notjusttired (talk) 18:38, September 10, 2019 (EDT)

Proposed changes to the controversy section
In the end, however, I would like to change some of the info that is already on the page. Mostly because it is already mentioned elsewhere in the new text with more detail (for example on the PACE trial or Oxford criteria). But there are also some sentences that are not entirely correct.

What I propose is to change the old information (which starts at the section Oxford criteria and ends before the section books) with the information below (references will follow later):

It has been suggested to me that I should tag common editors before making a major change on a MEpedia page, hope this works: User:Notjusttired User:Kmdenmark User:Pyrrhus

References inews.co.uk - 26 Mar 2019
 * Intimidation_and_bullying_of_PACE_trial_critics Many references and additional info on this page
 * Are ME/CFS Patient Organizations “Militant”?
 * Epistemic injustice
 * Mind the Gap
 * Problems and solutions ? (Undeserving sick
 * "There has been a constant drip-feed of denigration of patients with ME and a dismissal of ME as an organic disease over the last quarter of a century by Professors Simon Wessely, Michael Sharpe and Peter White; they all belong to a group dominated by psychiatrists (named in Hansard in December 1998 as the “Wessely School”). Most of them work for the medical and permanent health insurance industry.  The industry is panicking because it stands to lose millions if it has to pay out for a severe life-long physical illness whose worldwide incidence appears to be escalating out of control.  In 1994, Wessely went on record about the industry’s concerns: “By 1990 insurance and disability claims (for ME) were doubling every year”."https://www.investinme.org/Article-419%20Professor%20Hooper%20Response%20to%20The%20Observer%20Newspaper%20Aug2011.htm
 *  - selected points from NHS Occupational health and disability document for CFS, highlighting failure to disclose conflicts of interest and recommending denying ill health retirement until after CBT and GET are done (2006). Sharpe and Peter White were the only external advisors. Document still in use. - full document added to bottom of Notable studies on the page.
 * Online activists are silencing us, scientists say Reutershttps://web.archive.org/web/20190909133155/https://www.reuters.com/investigates/special-report/science-socialmedia/ - 13 Mar 2019 (Note David Tuller's blogs about the upcoming interview were posted in Feb, he was interviewed as part of it)
 * Trolls force Oxford expert to stop research into MEhttps://www.thetimes.co.uk/article/trolls-force-oxford-expert-to-stop-research-into-me-ttnb8gznv - The Times - 15 Mar 2019
 * Science versus social media: Researchers are stopping work on ...
 * Top Oxford researcher trying to bust the mystery of chronic fatigue says he QUIT and turned his focus to new research because trolls are 'too hostile' He criticized the “ME lobby” for objecting to rehabilitative treatments and emphasizing the validity and chronicity of the illness.  According to Sharpe “a strong belief and preoccupation that one has a “medical disease” and a helpless and passive attitude to coping is associated with persistent disability.” In the article, he also claimed that the current system of state benefits, and sickness insurance payments, and litigation forms a potentially major obstacle to recovery. Sharpe argued that “benefits and medical services need to be more rehabilitation orientated.”


 * Corrected article name notjusttired (talk) 18:38, September 10, 2019 (EDT)
 * What litigation? Disability / welfare system and appeals do not involve any lawyers or legal representation, nor is any compensation for mistakes given. I think this needs to be a direct quote since I can't follow what he is talking about. Could be legal action against Unum for not paying out benefits for ME? notjusttired (talk) 18:38, September 10, 2019 (EDT)

Malingering and illness deception conference meeting

Michael Sharpe presented at a Malingering and Illness Deception conference funded by the UK's Department for Work and Pensions on the topic of distinguishing malingering from psychiatric disorders, a topic that later became a chapter of a book published in 2003 by the same name.[26] Sharpe's chapter gives an example of the case of a woman with Chronic Fatigue Syndrome, which is classified as a not a psychiatric disorder. Other contributors to the book include Simon Wessely, Peter White, Mansel Aylward, all of whom became members of the PACE Trial Steering Committee a few years later.[5][26]


 * This was a full day conference, not a single meeting or a single presentation. notjusttired (talk) 18:38, September 10, 2019 (EDT)


 * notjusttired Ok, but just to be clear this is something you yourself have written, not me.
 * I didn't remember! That must have been before I checked out the book. When I'm giving feedback is well be on whatever is there, which I realize often might not be a change you made. I have noticed that going over the page has been a chance to improve some of my previous content. I guess that means you are OK with the change though :-) notjusttired (talk) 08:28, September 12, 2019 (EDT)

The danger of believing in ME
 * This should be a heading and changed - it may be misread as MEpedia's view rather than Sharpe's. Maybe - The dangers of believe in ME (article) notjusttired (talk) 18:38, September 10, 2019 (EDT)

According to Sharpe, “the insistence that 'ME' is an exclusively physical disease, untreatable except by rest, and with a poor prognosis, may in the long run have been unhelpful for sufferers.” He has also argued that extensive laboratory investigation “may be psychologically harmful to the patient by reinforcing their beliefs or concerns about serious physical disease.” Sharpe has criticized doctors for “colluding with the patient's belief that their symptoms are explained by an untreatable disease (such as myalgic encephalopathy…).”  In a book co-written with Simon Wessely and Matthew Hotopf, Sharpe warned that campaigning for more awareness of ME in adolescents might have increased the incidence of young people with such presentations.
 * Did Sharpe cite a source for this? If so we should include it, if not I think it important to say this or include "Sharpe wrote that, in his opinion," notjusttired (talk) 18:38, September 10, 2019 (EDT)

Denigration of critics

Michael Sharpe has repeatedly criticized scientists and patients who highlighted flaws in his research or used Freedom of Information Act (FOIA) requests to demand the release of unpublished data from his research, including the successful request for unpublished data from the PACE trial.
 * This meaning isn't clear because denigration means more than criticism. Ad hominem attacks from Sharpe should be in here - there have been many and they are not limited to critics. He has made continual attacks on the character of others, and on the reality of their illness, there must be a dozen articles in popular newspapers and Reuters now. A few phrases or 1-2 sentences explaining would clarify this. notjusttired (talk) 18:38, September 10, 2019 (EDT)
 * Sharpe also threatened to sue John Peters, claiming he lied in a tweet, and only backed down after Peters posted the original documents. Peters is one of those who has put in successful Freedom of Information Act requests. Note - see reference added under References heading above notjusttired (talk) 18:38, September 10, 2019 (EDT)

“Patients would surely be too ill to produce so many complaints”

In 2018, a tweet by Sharpe claimed that some Freedom of Information Act requests and scientific criticism could not have been made from patients since they would have been too ill to do so. He claimed that “many of the activists trying to have scientific papers they don’t like retracted are not patients. Patients would surely be too ill to produce so many complaints and FOI requests to journals, funders, and universities.” Sharpe's tweet led to over 100 Australians from the ME/CFS community requesting an apology, pointing out that Alem Matthees had been bedridden for 2 years since winning the FOIA tribunal that led to the release of the PACE trial data, a decision that Sharpe had opposed. Sharpe deleted the tweet as a result of the open letter, which had been signed by Alem Matthees's family.

Comparing critics to climate change deniers
 * typo fixed in heading notjusttired (talk) 18:38, September 10, 2019 (EDT)

Sharpe has described those who opposed his research as a "co-ordinated campaign" of persons who are "against science",  similar to climate change deniers. In a lecture Sharpe said that the use of “co-ordinated pressure group action against science was prominently seen in the field of climate change research but is now emerging in other areas. Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME for short) is one of these.” Sharpe has argued that even “the well-intentioned campaigning for better recognition of CFS inadvertently reinforces the social and cultural conditions that made that recognition more difficult in the first place.”
 * Please Cite Keith Geraghty's article here and refer to it - he wrote about these attacks being a way to deflect from answering scientific questions asked by patients  and fellow researchers or professionals. I think it was the article written with Charlotte Blease. notjusttired (talk) 18:38, September 10, 2019 (EDT)

(Note: see references heading advice and Keith's tweet about the militant narrative being used to detract attention from scientific criticism.) notjusttired (talk) 08:28, September 12, 2019 (EDT)

Unbecoming of an MP and retraction requests

In 2018, UK Member of Parliament (MP) Carol Monaghan raised the issue of the PACE trial in the UK Parliament. Afterward, she received an email from Michael Sharpe saying her actions were ‘unbecoming of an MP’. Monaghan responded in parliament by stating: “if listening to my constituents, investigating their concerns and taking action as a result is ‘unbecoming’, I stand guilty.”
 * I believe she stated this was intimidation but need to check on that. This may have been when she said the PACE trial was a fraud. What Sharpe also said - was is major - is that she was using "parliamentary privilege" to avoid being sued. He repeatedly threatens to sue people. notjusttired (talk) 18:38, September 10, 2019 (EDT)

When, in 2019, the Health Research Authority’s report on the PACE trial indicated no regulatory concerns, Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of articles critical of the PACE-trial. Sharpe’s e-mails accused the writers of the articles of suggesting that PACE was “fraudulent.”
 * We should say that no retractions were made notjusttired (talk) 18:38, September 10, 2019 (EDT)

In 2018 Amy Maxman wrote an article for Nature about ME/CFS which included recent criticism of the efficacy of psychosocial interventions. Sharpe and colleagues responded with a letter in which they argued that “there is no place for stigmatizing any avenue of research or therapy that might help us to improve the lives of people with this long-term debilitating illness.”

Regarding the revision of the Cochrane review on graded exercise therapy, Sharpe has claimed that the Cochrane editor “wilted badly… under direct pressure” from activists”, despite email correspondence indicating this to be untrue. The Cochrane editor in question, David Tovey, had explicitly stated that “this not about patient pressure.”
 * Was this about a revision, or the withdrawal of the patient data? Did he comment on the withdrawal / retraction? References may be on the Cochrane page notjusttired (talk) 18:38, September 10, 2019 (EDT)

Retirement from CFS research

In March 2019 Reuters journalist Kate Kelland published an interview with Professor Michael Sharpe in which he claimed to have given up research in ME/CFS due to abuse and harassment from ME activists.
 * Can we clarify if he still sees patients, whether this is known / not known. Also he may have published research since March - Wessely published a lot after his "retirement" from research.notjusttired (talk) 18:38, September 10, 2019 (EDT)

Difference between old and proposed text
These are the main differences between the old text (that's still on the main page) and the proposed text, regarding the controversy section.

Oxford and Fukuda criteria rewritten

I have rewritten the section on the Oxford and Fukuda criteria. The old information is still on the page but I think it can be merged/deleted into the new one I’ve written. Here are the changes I propose:

Because the text on the Sharpe page is now much longer I think it’s better to merge the information on the two case definitions into one heading. The suggestion that the Oxford criteria do not exclude patients with symptoms that could be caused by psychiatric disorders is not entirely correct (it’s less stringent in this regard but some psychiatric disorders such as schizophrenia, manic depressive illness are explicitly excluded). The criticism that it excludes patients with a neurological disorder doesn’t make much sense because the same is true for all CFS case definitions. So I prefer to delete these and focus on direct quotes of criticism of the AHRQ and NIH working group (see text update). I do not think the Deale et al. (1997) study (in which Sharpe is not an author) and York review are not relevant here and should also be deleted.
 * Unlike the other CFS conditions the Oxford criteria require no neurological disease to be present. I just checked - "proven organic brain disease" (p118) is the exclusion, this is a part of the Neurological diseases in the ICD not the whole chapter - ME, CFS, and PVFS are all classified under this Brain disease heading. This is not very clear but I think excludes Parkinsons and hydriencephalomyelitis, Alzheimer's. Unsure about MS. ME and CFS in the UK health system are a neurological disease in the Brain diseases section, so this wording implies that aren't, and prevents diagnosis when someone has a neurological disease that can't for their symptoms. Other criteria allow for a neurological disease with different symptoms to be present with CFS. I think. ME-ICC exclusions are only: primary psychiatric disorders, somatoform disorder and substance abuse.
 * Fukuda exclusions - no neurological disease or brain disease exclusions. Can be diagnosed along with MS if already being treated. notjusttired (talk) 18:38, September 10, 2019 (EDT)


 * notjusttired The Oxford criteria were agreed on a meeting somewhere in 1990. It is one of the first definitions of CFS. Any organizations 'recognizing' CFS as a neurological disease would have done so afterwards (and partly based on studies that used the Oxford criteria). So it's strange to criticize the Oxford criteria in this regard.What you say about the Fukuda criteria and MS doesn't seem right: "major neurologic diseases (e.g., multiple sclerosis, neuromuscular diseases, epilepsy)" are listed as "Examples of permanent medical exclusions" in the 2003 clarification of the Fukuda criteria (see: https://www.ncbi.nlm.nih.gov/pubmed/14702202). The Fukuda criteria only leave some room for conditions that cause similar symptoms as CFS but are milder or to a large extent treatable such as sleep apnea or hypothyroidism etc. Some criteria might have worded it more eloquently than others but the principle in the CFS definitions is similar that known diseases that can account for the symptoms are regarded as exclusions rather than comorbidities, in contrast to the definition of fibromyalgia. I don't think there is a case to be made against the oxford criteria about its position on excluding neurological diseases or not.--Sisyphus (talk) 08:03, September 11, 2019 (EDT)
 * Thanks for pointing out the 2003 Fukuda criteria update, I wasn't aware of that. CFS was a term introduced by the CDC with the Holmes criteria, in 1988 I believe. With recognition - all that happened from the ICD was to add CFS as an alternative name to Postviral fatigue syndrome and ME - all under the same code. They regard all as the same illness. (Note I'm talking about the ICD used internationally, not the American-only ICD coding manual which is managed by the CDC and has different codes). I did not realize until this week that they were so different. I'm adding some references above, but do bear in mind the criticisms are those made by others including the IOM report and various patient groups. Sharpe being British has had the most influence over UK policy and treatments. I think worth mentioning that the 2003 Fukuda update would later have similar exclusions. y don't recall if there are existing references to the significance of clear criteria and the need for them, but that would also be useful in showing support for the creation. notjusttired (talk) 09:29, September 12, 2019 (EDT)


 * It's vital to keep the Oxford criteria section separate from Fukuda because Oxford has been heavily criticized and suggestion for retirement. The Oxford criteria studies for CBT and GET skewed the results, once those are removed it showed CBT and GET were not effective. notjusttired (talk) 18:38, September 10, 2019 (EDT)
 * Patient group opposition to the Oxford criteria is particularly strong eg Invest in ME Research http://www.investinmeresearch.org/IIMER-Newslet-17-07-04.shtml "...reports from NIH and CDC which state that Oxford criteria should be retired (and thereby effectively invalidating any research into ME performed using those criteria), that CBT and GET should not be used.  It ought to be obvious to all by now that the Oxford criteria cannot be used for research into ME and therefore any research based on use of Oxford needs to be removed and ignored." Oxford criteria merges Idiopathic chronic fatigue with CFS, the Fukuda criteria does not and has not been suggested for retirement. [http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578?journalCode=rftg20& study here. The Oxford criteria contains more, but unlike Fukuda they were a Wessely school creation, I believe resulting from a single meeting.

notjusttired (talk) 19:22, September 10, 2019 (EDT)

I find the sentence that the Fukuda criteria was adopted by the CDC confusing because this always was the CDC criteria; Fukuda was commissioned by the CDC to come up with an update the Holmes criteria, if I understand correctly. The CDC took the initiative for this case definition.
 * I agree that this needs clarifying. But really shouldn't it be pointing out that the CDC recommended CBT and GET too? notjusttired (talk) 18:38, September 10, 2019 (EDT)

Controversy section rewritten

I’ve also reformatted to controversy section to make it more readable. It now consists of two themes : (1) Wessely school, and (2) denigration of critics. I think the title ‘smearing critics’ is too emotive an impartial. I write denigration of critics instead of patients because his weird tweet about FOI request that couldn’t possible be made by patients is ambiguous. That section has been renamed to a quote “Patients would surely be too ill to produce so many complaints” to keep the section about this particular episode. Alternative title suggestions are welcome.
 * Denigration is a much better choice, plus "Denigration by design" by Malcolm Hooper talks in detail about Sharpe. I would prefer Intimidation to be included - Intimidation of critics and Denigration of patients? Ordinary ME patients who have never heard of him continue to be subjected to harsh character assassination by him in UK press.

(While Hooper has strong views, it's well referenced and I find it very useful to check the original sources. I am Also unhappy about the use of "smearing criticis" on the Esther Crawley page). notjusttired (talk) 18:38, September 10, 2019 (EDT)
 * I did a re-read of Sharpe's newspaper articles - he only attacks patients that are advocates not general patients here (he makes unpleasant comments about patients in conferences, some research and on Twitter but not in the press do less impact. Because of this perhaps the heading Militant patient narrative and intimidation of critics. I think worth stating that specific people have made the intimidation allegations - it wouldn't be fair to say that is an overall view. MP Carol Monaghan is one, and that was clearly an ad hominem attack. On Twitter he suggested he might sue ME patient and advocate John Peters, claiming he had made a false statement about the PACE trial; Peters then provided evidence showing the statement was true.
 * I can't edit this while choosing the original art the same time but I suggest adding something like: In 2018, Keith Geraghty, psychologist and ME patient, and Charlotte Blease, published a peer-reviewed article that found no evidence of militant behavior in patient organizations, and Geraghty suggested that the militancy claims, including claims of harassment, were being used to "downplay the legitimate concerns of ME/CFS sufferers".https://twitter.com/keithgeraghty/status/968064492025405443 Sharpe has requested retractions to a number of articles critical of his work, and publicly objected to Keith Geraghty's article stating PACE trial prononents have harmed patients,https://core.ac.uk/download/pdf/131078694.pdf and controversially claimed that pressure groups were "against science", comparing them to climate change deniers. notjusttired (talk) 09:29, September 12, 2019 (EDT)

Smearing critics’ I’ve changed the phrasing of the sentence under ‘smearing critics’. His statements on critics are condemnable but they are not ad hominem attacks, he doesn’t refer to anyone personally or by name. I’ve included a direct quote of Sharpe’s lecture abstract and included another example and quote.
 * He complained to Carol Monaghan that her conduct was "Unbecoming of an MP"https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch after she criticized his research in the UK Parliament; he has criticized Action for ME for withdrawing support for CBT and GET, claiming that they dropped support of PACE despite being involved in the because they didn't like the results - when actually they only dropped support around 2016/2017 after the Wiltshire reanalysis was published, 5-6 years after publication - and avoided mentioning repeated Action for ME surveys showing the treatments did help and often GET harmed. That's ad hominem because it's a character attack. The climate change one accused those with legitimate scientific concerns of being anti-science: "The use of such co-ordinated pressure group action against science was prominently seen in the field of climate change research but is now emerging in other areas...." during an ethics seminar at prestigious Oxford University.https://web.archive.org/web/20190713230625/https://www.stx.ox.ac.uk/current-members/events/2773 St Cross Special Ethics Seminar with Michael Sharpe Thursday, June 1, 2017 Ad hominem attacks do not have to be directed as at a named individual. notjusttired (talk) 09:29, September 12, 2019 (EDT)

Denial of illness or disability benefits In the section “Denial of illness or disability benefits” I would like to delete/rephrase the following sentence: “He has also been paid by a number of health insurance companies seeking to deny or minimize disability insurance claims or ill health retirement pensions, including Unum and has repeated claimed that ME/CFS patients are motivated to stay ill in order to continue receiving disability benefits.” The statement that these health insurance companies seek to deny disability insurance claims isn’t a neutral claim and not referenced. IMHO All insurance companies would like to make money by paying out as little as possible, but if they are too aggressive they might lose customers. Additionally, I haven’t found publication where Sharpe says patients are motivated to stay ill in order to continue receiving disability benefits, only that this is a perpetuating factor. I’ve read the 1998 Editorial by Sharpe but do not see where he would have stated that patients are motivated to stay ill (he wrote that patients object to psychiatric classification because that could mean no insurance). The other reference is about a lecture that seems no longer retrievable. I’m fairly certain that the “undeserving sick” quote is taken out of context because Sharpe has consistently decried this situation in his work (see the section bodily symptoms on the MEpedia page and his most recent publication).
 * Added reference and "undeserving sick" section above. This is the best known of his quotes so important to mention. It's actually from 1999 UnumProvident source. Invest in ME link evidences "denigration of patients" (not critics) by Wessely school. notjusttired (talk) 20:11, September 10, 2019 (EDT)

Retirement from ME/CFS Research In the section ‘Retirement from ME/CFS Research’ I’ve deleted the statement: “however, the article was published less than a week after the publication of Sharpe et al's response to the PACE trial re-analysis by Wilshire et al.” I don’t think this makes sense. If you look at the dates, the Wilshere et al. reanalysis was published on 22/03/2018. Sharpe et al. submitted their response on 31/07/2018. It was mostly the journal that stalled the publication until March 2019. Also: it’s not unusual for a research to defend his publication against criticism or publish opinion pieces on a topic to which has devoted most of his career. That is not in contrast with the claim that he has left the research (which means he no longer does RCT, studies with patient selection etc.). I would also like to delete the sentence: “The same article was criticized for repeating the claim that Sir Simon Wessely has previously given up research into ME/CFS, despite his continued research publications indicating otherwise.” I think this is about Wessely and the Kelland article, but not relevant to Michael Sharpe.
 * The article needs clarifying: is talking about newspaper articles interviewing Sharpe that being released possibly on those dates to detract from Wilshire, the usual scientific rebuttal is normal practice and wasn't then as you said. Will add more refs later today but all will be March ones. I'm fine with that Wessely sentence going. notjusttired (talk) 09:29, September 12, 2019 (EDT)
 * Have now added multiple sources - while Reuters stalled the publication of Sharpe's interview, he also appeared in Radio 4 Today on Mar 18, 2019 notjusttired (talk) 10:30, September 12, 2019 (EDT)

Pace trial I think the PACE trial section can be removed under Controversy because this information is explained in more detail elsewhere on the page.
 * To avoid the PACE trial here would be a mistake. It's one of the more significant controversies. If there isn't an easy way to avoid duplicating the info then a heading can be used, with a brief statement linkex to the earlier section on the PACE, eg Sharpe one of the principle investigators in the highly controversial PACE trial. notjusttired (talk) 18:38, September 10, 2019 (EDT)

Wessely school I’ve deleted the sentence “Some of the Wessely school have been knowing to make unpleasant comments about patients.” because no reference is given for this and it is a subjective statement.
 * There are many differences to this on Wessely's page but Denigration by Design is a key one, although virtually all interviews by the Wessely school film the last 10 years could be cited. I don't know whether this adds much to the overall page though. notjusttired (talk) 18:38, September 10, 2019 (EDT)

I think all the other info was maintained (perhaps changed a word here and there for readability). And I’ve added some sections to it. Feel free to point out mistakes or sections you disagree with.

Tidying up the page (11/09/2019)
I've now inserted the new Controversy section and deleted the old one. I've added references and here and there a sentence was changed compared to the version presented here (see the history of editing the page). I've also been trying to tidy up the page (it had, for example, two sections on books, both incomplete). I've placed the section notable studies and letters as a subsection under list of publications. I think is still chaotic though. The article seem randomly selected. Wouldn't be better to focus on his articles that are most cited (you find these her on google scholar: https://scholar.google.com/citations?user=6rmDrdUAAAAJ&hl=en). I would like to change this as well. I also find the way of mentioning the studies articles weird because it doesn't mention the first author. Researchers usually refer to studies in short as First author et al, date. So the PACE trial would be White et al., 2011. I think we should use this method on MEpedia as well.

Everything removed?
One more thing notjusttired. I saw that you've now deleted everything I've added to the page on Sharpe. Not just the old section that I've updated but also the ones that were brand new and unrelated to what was on the page. So if people now start adding information about Sharpe's bio or his work, they might be doing work or adding info that I've already done (but they can't see that because you deleted it). So we might end up with duplicates. I hope you agree that, even if a lot of changes need to be made to the text I proposed, the final version of the Sharpe page will still look more like the text I wrote than what is currently displayed on the page (simply because it has a lot more information and references). So I think it would make more sense to start working from this version. If the problem is that you do not trust the accuracy of what I wrote perhaps you could just add a warning template that "The neutrality of this article is disputed" or something like that? I'm concerned that if people start working on the page then we might end up with the two versions: the one I wrote and another one that has been worked on during the time my version was not displayed. And that might make it all the more difficult to come up with a consensus version. So what I would suggest is to restore the version of my last edited. That is the text that I propose. You can then make changes to it and comment on it. If you think something important is missing, I'll try to help restore it from the old version. --Sisyphus (talk) 18:17, September 12, 2019 (EDT)
 * Did I misunderstand you? I thought you said it was OK to revert because nothing would be lost since it's all stored in different versions. I assumed you meant to copy over content from the talk page after editing/agreeing together. Since doing that all I've done is redo your reference updates plus add s few more. I will add the new sections back in. With the references, it's not a matter of trust. It's a matter of needing citations for everything, and often different interpretations of research or of Sharpe's opinions. Different editors will have different views most likely due to having reading sources that others may not be aware of. And if course that's always a likelihood of misreading or jumping to conclusions even with careful editing, or phrasing something in a way that is interpreted differently by others to what was intended. I'm sorry for the inconvenience. What I would suggest with your edits though, is that instead of removing sentences that you can't find referenced or think are wrong - it's better to put citation needed, then give it a while for another editor to sort that. If they don't, then remove later on. I forgot to suggest earlier - with references it might save work to add mentions of the source in the text - eg "Sharpe and Wessely (1999) found that.... Very fast to add the reference without working out what the number changed to on a long page this this. notjusttired (talk) 20:54, September 12, 2019 (EDT)
 * User:Sisyphus I've added back in one major new section but brain has packed in so the rest will need to be done another time. Feel free to add back in your new sections, I think there were few more. I would prefer to agree on new headings before going further. I was not aware that the FOI section had gone. Also Sharpe considers CFS a functional somatic syndrome so it doesn't make sense to put this under non-ME/CFS research. I would prefer to not have so many headings with subheadings. What about clarifying the headings instead - eg Oxford criteria for CFS, Fukuda criteria for CFS, Functional Somatic Symptoms heading, MUS. Hope to be back online tomorrow. Sorry for any stress and extra work I may have caused by misunderstanding earlier. notjusttired (talk) 21:35, September 12, 2019 (EDT)

notjusttired It's not so easy to reinsert a text if there are lots of references (I had some trouble copying the references indirectly from an older version to a newer one). So what I did is I restored the page version that had the most information on it. That was the version where I inserted all my text but where I hadn't deleted the old info. I've then reinstated the edits you made after that version so that these were not lost. So the section on Books, notable studies, letters, media coverage and interviews are now in the version that you last edited it before I did the restoring to the older version. I've also added a cleanup template saying there are duplicates and that the page needs working on. Hope that will inform readers and other editors of the current situation while we work this out.--Sisyphus (talk) 08:10, September 13, 2019 (EDT)

Restart
So now we have a version of the page that has all the information on it. I would suggest that you take a look at the updated 'controversy section' I wrote and edit it in the way you would like to be. Since the old version is still on the page it would be easy to copy or restore info from there. I understand that you prefer working on the discussion section first. But please understand that this isn't workable for me because there's no visual editor here and the page has more than a 100 references. I don't think that there is a discussion on a 3500-word text with more than 100 references elsewhere in the discussion section on MEpedia. It's not doable to present this is in an orderly way (at least for me) - the small discussion we had is already quite chaotic. By editing the page step by step it's easier to read the intention of those proposing a change.

I also think/hope you might be underestimating how little I've changed to the old info that was on the page! I've mostly added info (for example on the Oxford criteria) and many of the changes I did make were often just to make it more readable. The FOI information, for example, is still there, I just had deleted the title because there were a lot of titles (have reinstated it now). I have no objection to adding the Geraghty/Blease study or the incident where Sharpe threatens John Peters on twitter. But this is info that wasn't on the original page. So it's unrelated to the changes I made. And I prefer working out a disagreement about these changes first before adding new information. I don't think I'll have major objections to the changes in title names you suggest. I was mostly concerned with keeping a neutral tone that's why I didn't like terms such as 'smearing' ad 'hominem attacks' 'denial of illness' etc. I prefer erroring on the cautious side and just explaining what the incident was. But perhaps you notjusttired should give it a go and edit the controversy section I've worked on. It would be easier to see for me where you are heading at and what you mean. --Sisyphus (talk) 08:10, September 13, 2019 (EDT)
 * I have a lot of brain fog just at the moment so can't  take in so your message at once right now. If at any time you wanted to use your user page to edit them that works with the Visual editor and I am happy to look there. Since I can't take in much right now I will try and do a few reference fixes. Good idea on the cleanup tag. notjusttired (talk) 20:16, September 14, 2019 (EDT)