Open letter from The Countess of Mar to Professor Simon Wessely | 4 December 2012

December 5, 2012

4 December 2012
Dear Professor Wessely

I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it is not surprising that I regard this belief with something less than amusement.

I wonder whether you recall the time when you were just getting your initial research into Gulf War Illnesses off the ground in mid-1998? I had given evidence to the Royal College of Physicians and Royal College of Psychiatrists Inquiry on Low Level Exposure to Organophosphate Sheep Dip which was published in November 1998. Your colleague, Professor Anthony David, was a member of the inquiry. I recall receiving a letter from you both to the effect that you were sorry that I had had reason to criticise your Gulf War research in the course of my evidence when, in fact I had not mentioned Gulf War research. You also asked to meet me. I recall correcting you on the facts and stated that I had no desire to meet you. I then received a number of telephone calls and letters, both to my office and my home, demanding that I meet you. I have to say that I regarded this as harassment at the time, though I did not see the need to contact the police. Eventually I agreed to accept your invitation to lunch at Gordon's Wine Bar behind Charing Cross Station.

I brought with me Ms Emily Green, an eminent scientific journalist, with your agreement. I shall never forget being astounded to find that, when we arrived at the appointed time, 12.30 pm, you had arrived early; bought your own lunch, and presented us with a bottle of water. Prior to the meeting you were very firm
about the time, as you had patients to see at 2.00 pm. We discussed a number of topics, including whether you knew Elaine Showalter and whether you had ever advised the Department of Social Security on subjects such as ME. Some of your responses we found were economical with the truth to put it mildly. It was very shortly before 3.00 pm that you finally got to the point – you wanted me to help persuade the Gulf War Veterans to complete your questionnaire!
I think you need to understand that this encounter left a rather enduring and nasty taste in my mouth, not least because I had to buy my own lunch when you had invited me to lunch. Neither was I impressed by your deviousness in response to straightforward questions. This caused me to look more deeply into what you were doing and into your associations, most of which are now public knowledge. This, in part, helps to explain why I have reason to criticise some of your work.

I have also attended some of your lectures and have read reports of others. I have heard and read the extraordinary way in which you and some of your colleagues have denigrated people with ME and have tried (and to some extent succeeded) to persuade others that people with ME are not really ill at all; they merely have aberrant illness beliefs'. You have deliberately obfuscated the terminology surrounding ME by linking it with chronic fatigue and attempting surreptitiously to reclassify it as a psychological condition under the WHO ICD classifications. In doing this you appear to have totally ignored the first exhortation to doctors – “First do no harm”. Yet when this beleaguered population has reason to look at your work critically you deny what you have said and written and plead persecution and harassment from the very people you purport to be helping. I would have thought that any thinking person would ask themselves why this is happening; would ask the individuals who are clearly angry what is angering them, and try to put things right. You are in an exalted position a Professor of Psychiatry with all sorts of awards. Why on earth do you need to play the victim?

My personal experience with organophosphate poisoning taught me that there are members of the medical profession who are not prepared to “listen to the patient for they will probably tell you the diagnosis”. I am fortunate in that I am articulate and determined and I have been put into a position where I can speak for others less fortunate than I am. If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way.

So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB on 2 November 1993 which was considering those with ME/CFS you said: “Benefits can often make people worse”, yet in your letter to Dr Mansell Aylward at the DSS you wrote: “CFS sufferers should be entitled to the full range of benefits”. Given that, in 1990 you had written: “A number of patients diagnosed as having myalgic encephalomyelitis……… were examined …… many of them, the usual findings of simulated muscle weakness were present” (Recent advances in Clinical Neurology, 1990, pp 85-131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME.

I note that you do not hesitate to condemn statements from your critics as “the same old stuff that they have been saying about me for years”. People with ME could be equally justified in their belief that you perpetuate the beliefs that you have long held that ME is a psychosocial behavioural problem and that you have totally failed to embrace the vast body of peer reviewed scientific literature that demonstrates damage to neurological, cardiac, endocrine and other systems in people with ME. I believe it was you who recommended that GPS should not indulge patients with too many investigations. This has meant that people with conditions that could have been treated have been misdiagnosed and neglected. I have spoken strongly in defence of people with ME who have been traduced by you and your colleagues who have embraced the psychosocial behavioural model. I am not ashamed of having done so for they have few who will defend them publicly. The scientific evidence is heavily weighted against ME being ‘all in the mind' so, by deduction it must be the economic argument that prevails, to the disadvantage of the estimated 250,000 people who have ME. have you ever considered the savings to the exchequer and to the insurance industry if people with ME were properly investigated and treated so that they could return to work or education?

I take no pleasure in asking “bogus” questions and making speeches in the Lords. I would very much sooner your profession got its act together and spent some time studying the real effects of ME on patients and looking for solutions. We all recognise that chronic illness, whatever it may be, presents with psychological aspects. CBT can only be a management tool and GET reportedly does more harm than good for patients with ME/CFS as opposed to chronic fatigue.

Patients must be able to trust doctors and scientists. You have betrayed this trust. A scientist should be able to accept honest criticism. You have misconstrued criticism and turned it into harassment. You have much to answer for, so it ill behoves you to employ diversionary tactics in an attempt to portray yourself as the injured party.

I have written this as an open letter because so much of this debate has been in the open. It would be helpful if you would make your position with regard to people with ME/CFS utterly clear. Do you still believe the ME/CFS is “perpetuated by dysfunctional beliefs and coping behaviours” as you wrote in your 2002 CBT Manual for Therapists? If you do, please will you explain why no one got better with your model. If you do not, would it not be sensible for you to withdraw it instead of continuing to make the facts fit your theories as they appear to have been in the PACE statistics where you were in charge of the Clinical Trial Unit.

I look forward to hearing from you.

Yours sincerely
Countess of Mar

12 thoughts on “Open letter from The Countess of Mar to Professor Simon Wessely | 4 December 2012”

  1. What an absolutely brilliant letter from the Countess of Mar, what a heroine she is. It would be great if it could be published in the Independent as a riposte to the one published on 25 November.
    And while we all know Wessely’s failings – being too mean to buy the lady lunch when he’d invited her…that’s a new one…

  2. I would just like to thank this wonderful lady, the Countess of Mar.
    I am truly thankful that we have her to defend us, as many of us don’t have the strength to defend ourselves. I’ve never left a reply before and it’s just taken me about half an hour to do so because I wanted so much to express my appreciation to the Countess of Mar for her tireless support and to the ME Association for keeping us up to date with articles, research, news, etc. – it’s all some of us have left to justify why we feel so tortured, firstly by an inexplicably cruel illness and secondly by inexplicably cruel professionals who are supposed to care but don’t!
    Kind wishes

  3. I literally had a spring in my step after reading this, like having an angel speak out on behalf of us all, and a weight falling off our shoulders. We need more public figures speaking up on our behalf, more robust support in our corner.

    The issue of not indulging patients with too many investigations is especially resonant for me as if Prof Behan had not ‘indulged’ me with many specific blood tests and EMG and musle biopsy, I would possibly not have had a confirmed diagnosis.

  4. So Simon Wessley harrassed the Countess of Marr with letters and telephone calls whilst himself purporting to be the victim of harrassment; I wondered why several publications ‘spontaneously’ launched into character assassinations of Simon Wessley’s erstwhile ‘patients’, implying they were mad, bad and dangerous to know. It’s all beginning to make sense. The only issue still remaining is why Simon Wessley is still authorised to practice medicine even setting aside the fact that he is an obnoxious little creep.

  5. I registered just to say how grateful I am for this brilliant letter. I’ve been too ill to speak or do more than cope for the past 2-3 years and it’s truly inspiring to see those who can standing up for so many who can’t speak up for themselves. Thank you.

  6. Massive thanks to the Countess of Mar for her reply to yet another “poor me” tale of woe from Professor Wessely. Am I being too cynical if I suggest that every time there are a few articles in the media that appear sympathetic to the ME community, this old chestnut of persecution and harassment is trotted out by his camp to redress the balance?

  7. Don’t think your being cynical at all, Kailey. The biopsychosocial school simply cannot bear that their flawed theories are being exposed as wholly inappropriate for our illness, so we get these harassment tales popping up over and over again. I reiterate, none of us endorse unpleasant threats, why on earth would we, but really it is no longer newsworthy. Yet this theme of poor Simon, or poor Esther or poor researcher is wheeled out again and again, just to discredit ME sufferers, lest people – who are still in the dark about ME- actually start to believe us. Really, it is time to move on. There *are* eager biomedical researchers out there, and we don’t need dragged down by all this old news.

    The threats narrative has been allowed to take over the ME narrative, the narrative of 250 000 ill people – whose lives are often in tatters because of ME – is frankly at this point more important than these doctors’ woes. Report the wrongdoers, investigate them, and move on. Please.

    The Countess has said it all in her letter. But I don’t think Simon has really addressed her concerns at all. His reply is here, and also her reply to him:

  8. Countess you are a wonderful lady. Taking the above letter into consideration and remembering little snippets of information I’ve read about this man over the years, i.e. reportedly accusing Camelford Water poisoning victims of faking symptoms for Insurance claims and reports of manipulating M.E. clincal trials with people with the right set of symptoms, I wonder whether these reports are true and whether there is enough collective information to hand over to Panorama or the Tonight programme etc. to do some digging and ask the question “Is this man a vile excuse for a human being, persecuting vulnerable people, is he fit to practice?” or is he the one being completely unjustifiably persecuted? I think it would make for good viewing. There must be some historical documents hanging around.

  9. I too would like to express my gratitude to the Countess of Mar for her forthright approach. The only issue not addressed here is why on earth Prof Wessely repeatedly maintains he has quit the field of M.E. research (for one reason or another -usually some version of being harassed by patients,) to hang out in ‘safer’ climes (a war zone such as Afghanistan,) only to resurface yet again with yet another tedious article or piece of ineffectual research (usually a rehash of previous tedious & long ago proven to be ineffectual research). Grow up man and move on. Most of your patients had to years ago.

  10. I agree, it’s a great letter, and thank you to the Countess. Simon Wessely has been active for years muddying the waters, presumably to benefit insurance companies and the DWP. A year or so ago, he put out his press release about “death threats” to co-incide with the release of an international consensus on a definition and diagnosis of ME.

    The “death threats” were events that had taken place some years before – hardly urgent news. Needless to say, it was the “death threats” that got widespread news coverage – the international consensus didn’t receive a mention. Job done. I hope this letter will help more people see through his antics for what they are.

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