Michael Sharpe skewered by @JohntheJack on Twitter

Carolyn Wilshire · Jun 23, 2018

Sly Saint said: ↑

In 1992 Dr Anthony Pelosi , then Consultant Psychiatrist at the
Lanarkshire Health Board, Hamilton + East Kilbridge Unit, Glasgow, a
longstanding friend and collaborator of Professor Simon Wessely and Dr
Peter White, said in a personal letter to me :
‘ ...I am rediagnosing a substantial proportion { probably over 50% ) of
the [ME/CFS] patients who are referred to me. ..The diagnoses so far have
included thyroid dysfunction, breast cancer, chronic renal failure ,
severe endogenous depressive illness and severe anxiety states ...’....."

am I getting warmer?
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No comment.

Sly Saint · Jun 23, 2018

Back to Sharpe.....
https://twitter.com/user/status/1010446942336376832

TiredSam · Jun 23, 2018

Woolie said: ↑

Oh, woops, that idiot psychiatrist quoted some of his own work in that review. I guess his identity is now formally outed!
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I wouldn't worry, I'm sure no-one will go searching for clues:

As I have written before (Pelosi, British Journal of General Practice, January 2000) and I have thought to myself on many occasions since - may God forgive me for the part I played in destroying the lives of some of these vulnerable patients.
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And look up the citation to see who has been beseeching the almighty for forgiveness, in a review of a publication by his mates no less on page 82 of the following:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1313620/pdf/brjgenprac005045000071.pdf

Chronic fatigue and its syndromes
Simon Wessely, Matthew Hotopf and
Michael Sharpe
Oxford University Press 1998.
HB, 416pp, $79.50, 0 19262181 5

I first came across patients with severe and unexplained fatigue states in 1981 when I was a keen and, I thought, ever so knowledgeable registrar in neurology. These patients would get a huge battery of tests — from lumbar puncture, through visual evoked responses, to muscle biopsy — which were always normal. They would then be given the diagnosis of ‘myalgic encephalomyelitis’ (‘ME’), a disease that only our group knew about and understood. They were told that not one of the couple of hundred patients we had seen with this illness had ever got better but research advances in neuro-virology may lead to a cure. For reasons that we never really thought about many of these patients hated their previous doctors, especially their general practitioners. However, they were grateful to us and this felt extremely satisfying.

It is now obvious that before embarking on these investigations we should have spoken to our patients using the skills we were all taught at medical school. Our social history was farcical — usually along the lines of ‘Smokes 10/day; occasional alcohol; currently unemployed’. We never did a mental state examination because to do so was somehow considered an insult to patients. We should also have been in the library finding out how other doctors from other specialities had tackled similar clinical problems.

It was all a complete mess and may God forgive me for my part in ruining the lives of some of these vulnerable patients. Things are in an even greater mess now. Journalists have sensed a good story and, with a few honourable exceptions, they are either in the insulting ‘yuppie ’flu’ camp or they believe that patients are being deliberately maltreated by an uncaring medical establishment. This media interest is fuelling self-diagnosis in people with a host of unrelated illnesses and problems. Even worse, parents are now diagnosing ME in their children.

Panorama (BBC Television, 8 November 1999) recently allowed its journalists to dive into the debate without any attempt at balanced reporting. They implied that nothing could be done to help ill children with severe and chronic fatigue. The parents of their featured patients had trooped around the country until they found a paediatrician who would agree with their own diagnosis of ME. Some child psychiatrists were at least prepared to try a rehabilitation programme. They should have accepted that this was doomed to failure since they had lost the trust of these parents and, inevitably, of the ill children. They set themselves up as easy meat for their critics by unwisely resorting to compulsory court orders. Unfortunately, the Panorama programme makers appeared unconcerned that doctors find it difficult to abandon an ill child to a potential lifetime of disability when this is due in part to a self-fulfilling prophecy of a poor prognosis.

General practitioners have a duty to protect their patients from simple-minded approaches to these heterogeneous and sometimes complex problems. In refining their own approach they can do no better than read Chronic fatigue and its syndromes by Wessely, Hotopf and Sharpe. This contains a wide-ranging discussion of the latest aetiological research into symptoms and syndromes of fatigue. It summarises outcome studies and offers approaches to investigation and treatment that could form a template for the management of these problems in primary and secondary care. However, it does not stop there. It tackles all of the medical hubris, subspecialist ignorance, journalistic excesses, and patient misunderstandings that have contributed to such a raw deal for some people with severe fatigue in recent years. It is also firmly rooted in a fascinating historical perspective that demonstrates repetition of errors at various times in the past century.

All doctors, and especially general practitioners, will continue to have difficulties in dealing with chronic fatigue states over the coming years. I firmly recommend to them this book, which is highly readable despite its intense detail. It should be read by the other health professionals who are involved in the management of chronic fatigue states, including physiotherapists, occupational therapists, psychologists, and complementary practitioners. I will also take it upon myself to send a copy to the producers of Panorama with a request that they pass it around their journalist friends.

Anthony Pelosi
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Carolyn Wilshire · Jun 23, 2018

We didn't just roll over. Here was my reply to BMJ:

Dear Navjoyt,

Thanks for your reply. I do understand you cannot accept every paper.

However, with this submission, something does seem to have gone very wrong in the review process. There is a very serious problem with one of the reviews. Reviewer 2 comes across strongly as having a personal agenda or viewpoint, and makes a number of statements that are highly emotive or otherwise inappropriate in the context of a journal review (e.g., ad hominem attacks on me or my co-authors). Many of these are also are ill-informed. The review also completely fails to directly address the core evidence and arguments presented in the paper. The reviewer is also incorrect that the work has already been published. Our previous publication considered only one aspect of the trial (claims of recovery). It was designed to pave the way for this broader article that evaluates the trial as a whole, and delves into considerably more detail – including presentation of the much-awaited novel findings from the reanalysis of the PACE trial.

It is the quality of the review, not its final outcome, that concerns us here. This review appears, at least on the surface, to recommend publication. But this makes it no less acceptable.

Reviewer 1’s review, although positive, was also rather scant. In this situation, it should have been clearly evident to the editors that an additional reviewer was needed.

In fact, I urge you to consider whether it was proper to forward Review 2 to us at all. Forwarding a review to the authors endorses its legitimacy as a source of valid information about the manuscript. By sending this review out, the BMJ is communicating the message that insults and emotive statements are acceptable substitutes for proper scholarly analysis of its manuscripts.

I have attached some brief notes that are intended to highlight the concerns about Review 2. I understand the need for confidentiality of reviewers. However, we will be making public some of these notes, including original quotes from Reviewer 2 and our accompanying responses. We feel this is important to maintaining an open process. No reviewers’ names will ever be revealed. The BMJ’s name won’t mentioned, at least not immediately. You need a chance to speak in your own defence first.

We gave BMJ the opportunity to consider this paper at their leisure, and had good faith that they would apply a fair and reasonable process. On submitting a paper to BMJ, we do not expect acceptance, but after nearly seven months’ wait, we do expect a proper scholarly evaluation of our manuscript. We do not feel that this has happened, and it is very disappointing.

Sincerely,

Carolyn Wilshire

Examples of Inappropriate Content in Review 2

“… these authors provide examples of what people with severe and prolonged fatigue have to put up with - even from other people who themselves have severe and prolonged fatigue.”

It is not for a journal reviewer to make wide claims about the views and potential reactions of patients, but rather to assess the content of the paper within its scope (which is patients diagnosed with CFS by Oxford criteria). Accusations of perceived wrong-doing, unsupported by evidence - are also clearly inappropriate.

This comment also displays an alarming lack of understanding of the patient perspective. Amongst CFS patients, there is widespread dissatisfaction with the treatments currently on offer (CBT and GET). The patient-organisation ME Action recently obtained more than 12,000 signatures on a petition calling for the misleading claims of the PACE trial to be withdrawn (http://www.meaction.net/pace-trial).

“I am sorry to hear of these authors’ ill health. I hope they will not be upset when I say that I do not accept their diagnosis of chronic fatigue syndrome. I do not accept at face value anybody’s declared diagnosis of chronic fatigue syndrome until I have done my own history and examination.”

Extraordinary comment for a scholarly review. Such ad hominem criticisms are not only irrelevant to the assessment of a scientific article; they are frankly insulting.

“These authors make a big deal of the fact that their paper is the result of collaboration between patients and scientists. I am still unsure whether that should be clinical scientists. Dr Wilshire and Dr Geraghty – do you have any clinical training and experience?”

Again, it was our hope that the BMJ would judge this paper on content rather than on ad hominem criticism of the authors. We do not make a “big deal” of the patient status of the article. It is mentioned in the author note. We do not use our status at any point in the paper to support our arguments; instead, we base our arguments on solid evidence and reasoning.

The reviewer goes on to express his wish that the “flaws” of our article, if published, will be revealed in the BMJ Rapid Responses, preferably by the authors of the original article. However, at no point does he attempt to identify these flaws himself, despite this being the primary task of a journal reviewer. Why is there no engagement in this review with the actual content of the manuscript? And how was it possible that the BMJ overlooked this key requirement for any review?

“Whether to publish this paper will not be a straightforward decision for the editors. It is certainly not an original contribution to the scientific literature. A paper with similar content by some of the same authors appeared only a couple of months ago in the journal "Fatigue, Biomedicine Health & Behaviour"….I am still waiting for that paper from my librarian…”

Before making a claim that two papers are heavily overlapping in content, a reviewer really does need to read both papers. Our papers are all available online without cost – no need to wait for the “librarian”. Just type in the names into Google scholar!

The paper in Fatigue paper does NOT cover the same material as the current ms, but deals in detail with the issue of recovery. The current paper has a much broader scope, delves into theory as well as evidence, and also presents the much-awaited results from the reanalysis of the PACE trial data that was recently made publicly available.

“The main reason I would like this paper to be accepted is because of some careless use of language by the authors. This can happen to anybody and I am sure these authors do not really mean what they say. They have however insulted and demeaned a subgroup of people with severe and prolonged fatigue (see below). This is in spite of the fact that Mr Kindlon, Mr Courtney and Mr Matthees are themselves in poor health due to severely fatiguing illnesses.”

Here are some further, highly emotive accusations of wrong –doing on our parts. Also, accusing us of “careless usage of language” is itself a careless accusation, if it is not supported by references to sentences in the document and an argument as to why they should be considered careless.

“If not, then I will write in and tell the authors that they should know better and I think I would end with a "Shame on you".”

Again, rather stunned to as the tone of language here that would normally be considered unacceptable in a journal review.

“It is about time that they moved on from their obsessive (in the non-psychiatric use of the term) poring over the results of a good (albeit imperfect) randomised controlled trial…”

This is a first-class example of the highly emotive language and style of this review, which seems to be based largely on strongly-held opinions and beliefs about the subject matter in general and/or its authors, and not about the material in the manuscript itself. Also, a professional who works with CFS patients (as he declares later) should not need to be told why such a critique is important. This trial continues to affect the treatment options of CFS patients both in the UK and overseas, and this is of enormous concern to patients. Therefore, attempting to negatively characterise myself and my co-authors as “obsessive” is not only unscholarly, but it betrays a profound lack of respect for the patient point of view.

“From what I can gather from this paper and their other writings Dr Wilshire, Mr Kindlon, Mr Courtney and Mr Matthees and to a lesser extent Dr Geraghty seem to believe that the best definition of chronic fatigue syndrome is whatever condition it is that has led to ill health in Mr Kindlon and Mr Courtney and Mr Matthees.”

Further examples of unseemly statements that should never have appeared in a journal review. No this is incorrect, we specifically define CFS in the article, using the primary definition from the trial. At no point do we discuss any of our own experiences.

“Wilshire and colleagues are right that the PACE trial is not definitive. I have only seen the PACE investigators say this on one occasion and in one paper although I may have missed some other instances. I think this was just some careless use of language. Give them a break.”

The exhortation to “give them a break”, referring to the authors of the original trial being critiqued is another type of polemic that has no place in a formal journal review. I understand these researchers are his friends and co-authors (that much is clear from his CV), but one has to put aside such things in a review and act in a professional manner. Or else, declare a conflict of interest.

“There is something unpleasant in the tone of this article (although I am also being influenced here by outpourings on the Internet). I cannot help but get the impression that Wilshire and her colleagues were punching the air when they thought they had come up with support for their views that certain treatment methods for certain people with serious ill health were not as helpful as others (both patients and clinicians) had hoped. Are Mr Kindlon, Mr Courtney and Mr Matthees absolutely sure that they are writing about syndromes of chronic fatigue? Are they sure they are not simply writing about themselves? “

Again, I was struck by the irony here, given the emotive and sometimes insulting and patronising tone of this review. Note here there is a further appeal to ad hominem arguments.

“This brings me to the insulting language about certain patients with severe and prolonged fatigue states. Mr Kindlon, Mr Courtney and Mr Matthees are absolutely certain that their condition is not influenced by psychological troubles or social stressors. This does not give them and their co-authors any right to belittle other patients and understate the severity of illness in those with a diagnosis of chronic fatigue syndrome where such factors are playing a major part in their ill health. These authors write “…the CBT programme considers patients’ concerns about exercise to be merely ‘fearful cognitions’ that need addressing”. Earlier in the article they state “This model proposes that there is no major ongoing disease process in CFS – merely deconditioning due to recent inactivity, and its various consequences”. Merely? Have they never met anybody with near 100% disability due to mere fearful cognitions? I have. Have they never spoken with patients who are at risk of dying due to mere fearful cognitions and their consequences? I have. Wilshire and her colleagues should be ashamed of themselves and I think their shameful language should be published and then condemned.”

In the context of a formal scholarly review that discussed only evidence and make not statements about individuals, it is quite astounding to be personally accused of “belittl(ing) other patients and understat(ing) the severity of illness in those with a diagnosis of chronic fatigue syndrome”. Two of our co-authors will not be able to read this review at all because they are currently entirely bedbound and cannot use a computer. In this context, the assumption that we lack understanding of severe illness is particularly offensive.
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Lucibee · Jun 23, 2018

Sly Saint said: ↑

Back to Sharpe.....
https://twitter.com/user/status/1010446942336376832

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Yeah - I saw that about a month ago...
https://www.s4me.info/threads/a-general-thread-on-the-pace-trial.807/page-8#post-74052

Luther Blissett · Jun 23, 2018

The Present:

'HaVe YoU ReAd ThE PaPeR?"

The Past:

Lucibee · Jun 23, 2018

Carolyn Wilshire said: ↑

We didn't just roll over. Here was my reply to BMJ:
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And what was their response?

Carolyn Wilshire · Jun 23, 2018

TiredSam said: ↑

And look up the citation to see who has been beseeching the almighty for forgiveness, in a review of a publication by his mates no less on page 82 of the following:
"It was all a complete mess and may God forgive me for my part in ruining the lives of some of these vulnerable patients."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1313620/pdf/brjgenprac005045000071.pdf
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This is so funny!, He must just trot out his favourite phrases over and over again. Never mind the 20 year gap, eh?

chrisb · Jun 23, 2018

Perhaps that is part of the litany whenever the original triumvirate meet.

Carolyn Wilshire · Jun 23, 2018

Lucibee said: ↑

And what was their response?
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Dear Dr Wilshire,

Many thanks for getting in touch with us with your concerns. I am so sorry that the review process fell short of the standard you expected from The BMJ.

From your email to us on 8 April 2017, you explain that you do not feel that a proper scholarly evaluation of your manuscript took place, with specific concerns about the quality of referee reports and the appropriateness of forwarding reviewer 2's comments to the author team

The usual process for Analysis articles is that they are screened initially by an editor and then sent out for external peer review if deemed to be on a topic that is potentially relevant, interesting, and important to readers. Once we have the referee reports - ideally a minimum of two - the paper is listed for discussion at a fortnightly manuscript meeting. We select reviewers with different types of expertise and experience, and as you know we are committed to a peer review process that identifies reviewers to the authors (and, in the event of publication, to readers). At the meeting, a group of 3-5 editors discuss a batch of Analysis articles, in turn going through each paper's substance, strengths, and what it adds to previous work. Editors will also be mindful of a paper's suitability for the section and how it compares with other articles we are considering at the moment. We take the reviewers' comments into account, but the final decision rests with the editors and the degree to which reviewers' reports influence a decision will vary.

On this occasion, a thorough internal review of your paper by five editors gave us sufficient and convincing reasons to reject it. I’m afraid that all editors felt that the paper did not add enough to the debate for our audience of general clinical readers and raised more questions than it answered decisively. When this is the case, we tend to the view that the debate is better aired in the more specialist literature, where those most able to weigh the concerns will be sure to read the article. Our decision was informed by the reviewers but not driven by them, particularly because, as you note, on this occasion the two reports were each quite unusual: one was very short, and the other recommended publication so as to air in public many of the reviewer’s criticisms of the article. We did not feel that either reviewer persuaded us of the case for publication.

In terms of the time taken to review, and the possibility of seeking other reviewers’ reports,

there were, I am sorry to say, several delays that occurred during the editorial process for this paper, in part due to the length of time taken to send the article out for peer review, difficulty in obtaining reports from suitable reviewers, and finally a short wait in the queue of papers for the manuscript meeting.

While perhaps in another situation we may have sought additional reviews, when weighed against the unanimous editorial view for this paper and the time already taken to reach a decision, we did not think that in this instance we would be helping you by delaying the process further, given that it was very unlikely that any further reviewer would alter the editorial assessment of the article.

We do understand that you may find reviewer 2's comments upsetting and I’m very sorry for any offence they might have caused you. We passed these on to you in the spirit of our open review process but I regret that we did not do better to signpost them to you in our letter. Please do be assured that in evaluating the comments of both reviewers, the editors are used to considering the substance beyond the tone, and looking specifically at the issues that allow us to assess the article’s suitability for our particular audience.

I must also remind you that although we have an open peer review process where authors and reviewers are aware of one another’s identities, we do expect authors to keep reviews confidential, as we state in the decision letter. This blog explains our thinking: http://blogs.bmj.com/bmj/2016/05/16...-why-the-bmj-rejected-a-weekend-effect-paper/

In summary, while I do understand your comments about the quality of the referee reports, I am confident that a proper scholarly evaluation of the article took place. I unreservedly apologise once again for the time taken to reach a decision and for any distress the review process might have caused.

Yours sincerely,

Navjoyt
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Carolyn Wilshire · Jun 23, 2018

And my reply to their response:

Thank you for your reply, Navjoyt.

It is most interesting that you chose to take the stance you did.

I probably don’t need to point out the problems with your explanation. The most obvious one is that if you were able to make up your mind about the paper without reviews, why did you send it out for review and makes us wait seven months? That is a very long time.

Also, you say “in evaluating the comments of both reviewers, the editors are used to considering the substance beyond the tone”. But the evidence from the decision letter contradicts this claim. Some of Reviewer’s 2 phrases appeared directly in your justification of rejection - you note “methodological issues, such as patient selection and heterogeneity” - but there’s no indication that you understand what these phrases actually mean. Think about it for a minute. This paper reanalyses data from a previous trial, and we do not have the privilege of fine-grained information about the clinical similarities and differences between the patients they selected. So it isn’t really possible for us to consider heterogeneity, is it? Yes, it is true to original authors could be critiqued for not themselves considering this issue in greater detail (I think Reviewer 1 was hoping we’d add that point in a revision). But we can hardly “fix” the trial for them! Statements like this do not place your editors in a good light.

Given your lack of personal expertise and the lack of any real substance in the reviews, your only option was to seek out further information from other experts. You failed to do that.

I also have no doubt that you were aware Reviewer 2 was a close friend and frequent collaborator with the researchers whose trial was being criticised in this article (I see he is well known to the BMJ). You perhaps should have asked yourself whether that person was a good choice in the first place. Sure, it is possible to put aside personal beliefs and alliances to write a review, but its abundantly clear this particular reviewer was unable to do so.

But in any case, I’m not writing now to continue the debate, and I’m not seeking a response. I just want to have these points on record.

On the confidentiality issue, as I said earlier, we will never be make the reviewers’ names public – they will remain confidential. But dated correspondence from BMJ and the reviews themselves will be made available to academics interested in the review process, to share as they see fit. I do hope something good can come out of this, in terms of improving BMJ editorial processes and/or drawing attention to the way reviewer beliefs and biases can operate to silence good quality critical analysis in this area.

CFS is not my usual area of research, but it has been fascinating to see the way in which professional connections and strongly held beliefs amongst a powerful group of UK psychiatrists and psychologists silence high quality debate in this area. We offered the BMJ the opportunity to publish a critical but carefully balanced analysis of the entire trial (it notes the many strengths of the trial, as well as its limitations). But instead of being part of the solution here, the BMJ instead chose to be part of the problem.

Sincerely,

Carolyn Wilshire
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Lucibee · Jun 23, 2018

It's "hilarious" how these journals court controversy, and then act all coy when real debate starts to happen.

[by "hilarious", I of course mean "utterly infuriating"]

Snow Leopard · Jun 23, 2018

chrisb said: ↑

For the benefit of those who may in the past have seen oblique references to Reviewer 2 and not understood them, this is he.
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http://jonathanweisberg.org/post/Reviewer 2/

(includes some analysis/discussion of reviewer order etc...)

large donner · Jun 23, 2018

Carolyn Wilshire said: ↑

We had two reviewers, one reviewer recommended publication, describing our piece as a "very well-written and incisive analysis" and made some useful minor suggestions. The other reviewer, who is a Scottish psychiatrist that has previously coauthored publications with the Sharpe/White/Wessely group, was (unsurprisingly) very critical,
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Do we have to refer to him as the Scottish Psychiatrist from now on or forever bring a curse upon ourselves, is it because of unbecoming behaviour?

Inara · Jun 23, 2018

Carolyn Wilshire said: ↑

We submitted an earlier version of this paper to BMJ. It did not include as much reanalysis detail, it mainly focused on the recovery data and the arguments concerning the interpretation of subjective measures in non-blinded trials. The authors were myself, Tom Kindlon, Robert Courtney, Keith Geraghty, and Alem Matthees.

We had two reviewers, one reviewer recommended publication, describing our piece as a "very well-written and incisive analysis" and made some useful minor suggestions. The other reviewer, who is a Scottish psychiatrist that has previously coauthored publications with the Sharpe/White/Wessely group, was (unsurprisingly) very critical, and pretended that he wanted to see a paper this bad being made available publicly so he and his cronies could fully criticise it! It is worth reading the full rant, to really appreciate what passes for peer review at this journal. I would add that bits and pieces from this diatribe were quoted by the editor as justifications for rejecting the paper. What a shabby excuse for a journal.

Here is the full diatribe:
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Is this a "normal" review in the field your paper was written? It feels very personal and pretty attacking. I/We never received something so...subjective.

Diluted-biscuit · Jun 23, 2018

Andy said: ↑

Personally I'm not keen on MEAction UK taking that kind of direction in their communication. I can understand the temptation to create such an attack on Sharpe, he pretty much deserves all that he gets, but I'm not convinced that this is an effective message. It seems to be an attempt at a meme just for the sake of it.
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I agree. Honestly I just don’t like memes full stop for anything but pure humour. Flat earthers, antivaxers and other conspiracy theorists all rely on them which says to me they are not the way to argue something seriously.

Hoopoe · Jun 23, 2018

These psychosomatic theorists give me a backwards religious nutter vibe. The similarity is in the belief in mysterious unseen forces, which only they can understand, and in their tendency to attribute illness to the moral failure of the sufferer, and their lack of interest in objective science and sound logic.

Indigophoton · Jun 23, 2018

https://twitter.com/user/status/1010509868954980357

Indigophoton · Jun 23, 2018

https://twitter.com/user/status/1010294745971724299

large donner · Jun 23, 2018

Spoonseeker@spoonseeker In this video clip, @profmsharpe clearly presents ME as being synonymous with CFS. So how can he now claim #PACE not about ME? Thanks to @johannawj80 for finding this. https://twitter.com/johannawj80/status/1010422209804931074 …

michael sharpe@profmsharpe Read the paper
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I have stated on numerous occasions over the years since PACE and Peter Whites statement.....

In their letter, Peter White et al state: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”.
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http://www.investinme.org/Article427 Initial response by Hooper to undated letter by White to Horton.htm

.....that this would be their fall back position and they have done this by using the oxford definition.

Its still nonsense and most can see it as double speak but they are claiming now that others may call x, or y or z ME but they only studied the thing in that statement above so "read the paper".

I have been told on numerous occasions that Whites statement above was insignificant when I brought it up. Although it still doesn't excuse the outcome switching etc.

Anyway that's where we are now.

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