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

=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)

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
 * 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”."  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)

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)

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)
 * 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 Alsop unhappy about the use of "smearing criticis" on the Esther Crawley page). notjusttired (talk) 18:38, September 10, 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.

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.

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.