Michael Sharpe skewered by @JohntheJack on Twitter

Matt (@DondochakkaB) said:
I think the Lancet is likely to make some sort of move first. Surely it must smell the foul air after thursday's debate. Wouldn't be the worst gesture to offer to publish Wilshire et al's paper.
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That's what *should* happen, but knowing The Lancet's entrenched position, it won't, unfortunately.

btw - did @Carolyn Wilshire et al submit their paper to The Lancet in the first instance? TL guidelines do say that you can request that certain people don't review your paper. Asking for independent review would have been reasonable in this instance. Then, if TL turn that down, they are the ones being unreasonable.
 
Lucibee said:
That's what *should* happen, but knowing The Lancet's entrenched position, it won't, unfortunately.

btw - did @Carolyn Wilshire et al submit their paper to The Lancet in the first instance? TL guidelines do say that you can request that certain people don't review your paper. Asking for independent review would have been reasonable in this instance.
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I think one paper got submitted to the BMJ as reviews were unprofessional and commented on.
 
I second Andy on this. Unless they are aware of the substance of the communication in which Sharpe used the term this appears very risky. Sharpe is no fool. Unless they know what response Sharpe might have it would have been better to avoid this. Perhaps they have inside information and have assessed the risks and consider them worthwhile. Perhaps not.

I think there is a risky practice developing of using edited comments for short term gain. It is not a practice which is viable in the long term. I am still dissatisfied with the approach of leading members of Forward ME to this practice elsewhere.
 
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:
One of the nice things about providing a referee's report (and it is even nicer when I am the recipient) is when a fresh look at a manuscript provides simple suggestions that lead to clear improvements in the eventual published paper. For the 1st time in the three decades that I have been refereeing scientific papers I am going to recommend publication of a manuscript but only on the condition that no changes are made based on any of my comments or questions or criticisms or praise. This is because the tone of this paper and certain of its content provide a fascinating illustration of some of the problems that surround the management of people with severe and prolonged fatigue states. As well as making some quite interesting points 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. If this manuscript is published in the BMJ this will give the chance for correspondents in the Rapid Responses section to point out some of its flaws and hopefully a valuable debate will follow that will contribute to a more thoughtful approach to this whole difficult field.

There has been and continues to be a great deal of scientific controversy surrounding the PACE trial of the treatment of chronic fatigue syndrome(s) using graded exercise therapy vs cognitive behavioural therapy vs adaptive pacing therapy all in addition to standardised care delivered by doctors with specialist experience of chronic fatigue syndrome(s). The back and forth scientific controversy makes fascinating reading as does this manuscript by Dr Wilshire, Mr Kindlon, Mr Courtney, Dr Geraghty and Mr Matthees.

In my opinion, the differing scientific interpretations of this trial have little or nothing to do with the participants' scientific training and expertise. Rather, scientific stances are dependent on people's personal background and/or their clinical training and/or their clinical experience of assessing and treating patients with severe fatigue states and/or their own personal experience of ill health and/or the illness experience of family members and/or their personal experience of clinical care especially the care they have received from doctors. I will try - briefly and I hope not too boringly - to weave into this referee's report some of my own background which will perhaps give some understanding of why, overall, I dislike this paper and yet still want it to be published in a widely-read journal.

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". However, if it is published in the BMJ then this would provide a readily accessible update on some of the continuing controversies surrounding the diagnosis, prognosis and treatment of people with severe and prolonged fatigue. Because of the Rapid Responses/Correspondence section of the BMJ it will give the investigators in the PACE trial the opportunity to put their different scientific interpretations to a wider audience. They have already published these different interpretations in “Fatigue, Biomedicine, Health & Behaviour". I am still waiting for that paper from my librarian but I am certain that these scientists are more than able to defend their trial. An up to date defence of the PACE trial with balanced consideration of its strengths and weaknesses will be very helpful for clinicians and policy makers if it is published in the readily accessible BMJ.com. This will, in turn, make it easier when clinicians and health service managers try to improve services for the wide range of patients with severe and prolonged fatigue.

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. I am sure this will be picked up by the PACE investigators and other readers of the BMJ and highlighted in the Rapid Responses. 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".

If this manuscript is published in the BMJ and the authors receive the appropriate criticism (and credit) for some the things they have said I hope they will then get on with applying their skills and intelligence and insights to some proper work that will have a chance of genuinely benefiting patients with chronic fatigue syndromes and other overlapping disorders. 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 (…and name me one perfect trial that exists in any clinical field).

Here are some comments on the manuscript that may be helpful to the editors in deciding whether or not to publish this non-original paper in a major general journal. I am hoping that these comments will help draw out how interesting this paper will be to many readers of the BMJ.

1) These authors make no attempt whatsoever to acknowledge the heterogeneity of patients who are labelled with a diagnosis of chronic fatigue syndrome (and, in my experience, the even greater heterogeneity of the smaller number of patients who are labelled using the diagnostic concept of myalgic encephalomyelitis).

2) 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?

3) 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.

4) 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. The reasons for this are as follows. When I was a junior registrar in neurology in 1981/1982 our team investigated referrals – including self referrals – of patients with severe fatigue. They received a battery of investigations from brain scans through lumbar puncture through visual evoked responses to muscle biopsy. Every test would be normal. We never took a social history and never carried out a mental state examination. Come to think of it we never even took a proper past medical history. The patients would then be told that they had a condition called myalgic encephalomyelitis and would be sent home to rest with the prognosis that they would not improve but that there may be a cure in the future with advances in neurovirology. 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.

I later did clinical work with referrals with severe fatigue in three different clinical and geographical settings between 1988 and 2011. I found then that a substantial minority (for a period it was the majority) of patients with a diagnosis of chronic fatigue syndrome and myalgic encephalomyelitis had readily diagnosable conditions using basic knowledge of general medicine and general psychiatry. Sometimes my rediagnosis/reformulation would lead on to effective treatment. However, some patients would reject these alternative explanations. Some, sadly, would be angry towards me and state that I was not taking their illness seriously. It was very disconcerting and it raised major worries about the inadequacies of my clinical communication skills when I would tell a patient with a diagnosis of chronic fatigue syndrome or, more usually, myalgic encephalomyelitis that their profound fatigue and other serious symptoms were better explained by, for example, their recurrent diabetic ketoacidosis; or the systemic effects of their known severe rheumatoid arthritis and its treatment; or their severe psychotic illness and its treatment; or profound depressive illness; or crippling panic disorder; or Reiter’s disease; or obsessive compulsive disorder with co-morbid depression; or malnutrition due to anorexia nervosa; or the temporary aftermath of newly diagnosed and treated severe thyroid disease…….I could go on and on - and then be told by the patient that I was not taking their ill health seriously.

I accept that my experience must have been unrepresentative since I was working from psychiatric outpatient clinics and for most of this time I was based in the West of Scotland that was the epicentre of myalgic encephalomyelitis movement. However, I cannot believe that I am the only doctor who encountered this phenomenon. How can I be sure that Mr Kindlon, Mr Courtney and Mr Matthees do not have ill health that could be much better categorised using any one of a range of much more straightforward diagnoses?

5) Who diagnosed Mr Kindlon’s, Mr Courtney’s and Mr Matthees’ condition? I do not expect an answer since their medical history is and should remain confidential. However I have to raise the possibility that they are self diagnosed. For a while at my clinic a clear majority of diagnoses of chronic fatigue syndrome or myalgic encephalomyelitis had been made by the patient themselves or by a relative or friend or neighbour and not by any doctor or other clinician. Many (but not all) of these patients had other obvious reasons for their fatigue after taking a full history and doing a physical examination and mental state examination. I accept that such high frequency of self diagnosis/lay diagnosis may not be found in other clinics but, once again, I cannot believe that I am the only clinician who has encountered this phenomenon.

6) If they have been diagnosed with chronic fatigue syndrome by a doctor was this by their own doctor? There certainly used to be a phenomenon whereby patients with a self diagnosis of chronic fatigue syndrome and (even more so) myalgic encephalomyelitis used to go doctor shopping until they found a doctor who agreed with their own diagnosis. In my experience many (but not all) of these patients had readily diagnosable and fairly straightforward alternative diagnoses.

7) I notice in the manuscript that Dr Wilshire says she has “recently co-authored a major critical review of the concept of psychological causation in medicine…”. Dr Wilshire, I mean no disrespect, but is it for you to say that your review is a major one? I hope you will not mind my saying that I found it to be very unbalanced and highly selective in its use of the medical literature. Once again, I want this manuscript as it stands to appear in a widely-read journal so that interested readers will be able to get a clearer view of Dr Wilshire’s thinking and I hope it will be criticised appropriately.

8) I think Wilshire and colleagues are right to question the number of subjects in whom there has been “recovery”. They may not be aware that the word “recovery” has been hijacked throughout mental health services by the very influential and international Recovery Movement. This is a positive example of a powerful and creative collaboration between service users and clinicians. Wilshire and her colleagues should look it up. The Recovery Movement has contributed to improved care for many patients especially those with chronic psychotic illnesses. I think I was the last person involved in mental health services in Scotland – patient or clinician – to argue against some uncritical approaches of the Recovery Movement but I ended up giving in. I find myself talking to certain patients about recovery - who have no chance of recovery in the dictionary sense of the word. The PACE investigators will easily be able to defend themselves in regard to recovery in their trial since they have operationally defined what they meant by their use of this word and they have been very clear about changes they made in their definitions. Nevertheless, Wilshire and colleagues do have a point about how reported “recovery rates” could be misleading.

9) 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.

10) 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?

11) 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. They should then be given the opportunity to write what they really mean and apologise to those patients about whom they have been so offensive. This is the main reason why I want this article to appear in a widely read general journal that has an active Correspondence/Rapid Responses section.

I hope these comments are helpful to the editors. There is such widespread and heated debate around this subject that I think it would be helpful for some of it to appear in a widely-read journal. I hope the editors will agree with me and publish this article – then stand back and see how the debate unfolds in the Rapid Responses/Correspondence. I think this will lead in the end to more people with severe and chronic fatigue getting better care packages - which will include for some cognitive behavioural therapy and for others graded exertion therapy and for yet others perhaps even adaptive pacing therapy and for others none of the above but with high quality informed medical care for everybody. Hopefully it will also contribute to efforts to raise funding for more research projects that will join the PACE trial in giving us guidance about how to treat and how not to treat individual patients with severe fatigue be it explained or unexplained or simple or complicated.
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Thank you @Carolyn Wilshire for making public that truly shocking diatribe that pretends to be a review.

Surely the proper response by the BMJ to receiving such vitriol should be to report the writer to his employers for unprofessional behaviour. To use a current phrase 'conduct unbecoming...'

The man should be sacked and struck off the medical register.
 
PS I know the reviewer's name, and have chosen not to disclose it, as I think its more powerful as it stands - a ridiculous non-scholarly diatribe by a Wessely crony. It is clear the man has no scholastic ability, but his belief in the righteousness of the BPS crew (of which he is a member) is genuine and unshakeable.

I found this entire enterprise very disheartening, not for me personally, or even for PwMEs (we expected rejection given BMJ's stance, but decided to give it a go), but because it was like the whole psychiatric profession suddenly had no clothes, nothing but the belief in their own authority and righteousness. The fact that we trust these people to care for, and make decisions about, some of the most vulnerable members of our society is chilling.
 
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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 also agree with this ...it represents us as infantile and crass, same for the one that says “thank Parliament”. You thank your MP not the legislative body?

I think MEAction is at risk of becoming disparate and disjointed in its communication if they don’t centralise their comms better.
 
Carolyn Wilshire said:
Here is the full diatribe:
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Wow, this is truly unbelievable and totally disgusting.

It is an empty response, with no substance at all. Not a single trace of constructive criticism, of any concrete point in your paper, but mere ad hominem attacks.

I do not accept at face value anybody’s declared diagnosis of chronic fatigue syndrome until I have done my own history and examination.
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Who diagnosed Mr Kindlon’s, Mr Courtney’s and Mr Matthees’ condition? I do not expect an answer since their medical history is and should remain confidential. However I have to raise the possibility that they are self diagnosed.
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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?
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WTF


Sometimes my rediagnosis/reformulation would lead on to effective treatment. However, some patients would reject these alternative explanations. Some, sadly, would be angry towards me and state that I was not taking their illness seriously. It was very disconcerting and it raised major worries about the inadequacies of my clinical communication skills when I would tell a patient with a diagnosis of chronic fatigue syndrome or, more usually, myalgic encephalomyelitis that their profound fatigue and other serious symptoms were better explained by, for example, their recurrent diabetic ketoacidosis; or the systemic effects of their known severe rheumatoid arthritis and its treatment; or their severe psychotic illness and its treatment; or profound depressive illness; or crippling panic disorder; or Reiter’s disease; or obsessive compulsive disorder with co-morbid depression; or malnutrition due to anorexia nervosa; or the temporary aftermath of newly diagnosed and treated severe thyroid disease. I could go on and on - and then be told by the patient that I was not taking their ill health seriously.
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What is the link between this guy's clinical pratice and the paper????

I find myself talking to certain patients about recovery - who have no chance of recovery in the dictionary sense of the word.
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Yeah, that's the problem!!

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.
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Yeurk
This is disgraceful
Especially when you know how kind Tom is and Bob was (and I guess Mathhee, but I've never interacted with him). Precisely the opposite of this mean, pretentious and unscientific reviewer.

Edit: I am truly in anger. I'm sorry you had to undergo this @Carolyn Wilshire and @Tom Kindlon
 
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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I started reading this and had to stop at the doctor shopping bit ...I can’t quite believe what I’m reading.

I think this should be taken further.

I am actually lost for words to express myself properly.

Utterly unprofessional and toxic ..it’s a good example of what we face. Dare I suggest this is sent to Carol Monaghan?
 
https://www.bmj.com/content/324/7328/7.1/rapid-responses
"
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?
 
Carolyn Wilshire said:
Here is the full diatribe:
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Wow, that is truly disgraceful. I'm really sorry you and co-authors were subjected to such an unprofessional and offensive rant. Plus, who does he think he is, to ask "Dr Wilshire and Dr Geraghty – do you have any clinical training and experience?" and to question the credibility of your patient co-authors' diagnoses and that he would only believe it if he diagnosed them himself? He clearly doesn't even know what ME/CFS is, keeps referring to it as 'severe and prolonged fatigue', which shows his ignorance about diagnosing ME/CFS.

His smugly self-absorbed, self-indulgent writing style reminds me of 'someone else' we know in the BPS field...

I, too, feel lost for adequate words to express my disgust well enough. The well-worn phrase 'Wow...just wow' comes to mind. Ugh.
 
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