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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. Peter Kemp

    Peter Kemp

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    Letter from the Countess of Mar to Professor Simon Wessely

    [House of Lords Logo]

    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 ……..in 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
     
    rosie26, golden, Wayne and 37 others like this.
  2. currer

    currer Senior Member

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    WOW!!!

    What a great letter!
     
    rosie26, GracieJ, natasa778 and 5 others like this.
  3. Chris

    Chris Senior Member

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    This is indeed a great letter--in addition to, once again, documenting Wessely's continuing contradictions and slipperiness, it gives a vivid picture of the man in action--and it is very disturbing. The Countess is using her position--as she has often used it in the House of Lords--to make a strong and public statement, and we all owe her our gratitude and appreciation for what she has done and continues to do. The Duke and Duchess of Cambridge are preoccupied with family issues for the time being, and I guess would not be encouraged to take up such a controversial topic, but one wonders what would be the effect if...
    Anyway, thank you, Countess, for doing your very considerable best for those suffering in England under the present treatment regime! Chris
     
    GracieJ, beaker and ukxmrv like this.
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    I am shocked, SHOCKED at this further harassment! After just this morning reading more of Simon's website simonwesley.com (apparently i'msoawesome.com was taken) I now know how persecuted this wonderful, saintly human being is. He's the victim. I trust him. Trust me.
     
    "this encounter left a rather enduring and nasty taste in my mouth"
    Is that another breath threat?
     
     
     
     
     
     
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  5. Enid

    Enid Senior Member

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    Wow - thanks Peter - now the other - real side of the story is laid bare here again. Thanks to the Countess of Mar for her tireless work over many years. Love the word traduced - precisely.
     
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  6. maryb

    maryb iherb code TAK122

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    The Countess - what can I say but...... GREAT.
     
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  7. alex3619

    alex3619 Senior Member

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    The Countess of Marr has distilled many of the arguments we have been making and have had ignored. Some of what she says is further explained in Angela Kennedy's book on all this. In particular Angela recounts claims made at one time that strongly contradict claims made at another time by various proponents of CBT/GET.

    The question is: is anyone listening?

    The claim that we don't like psychiatry is a nonsense generally speaking: our arguments are against a particular branch of psychosomatic "medicine". A number of psychiatrists and psychologists have been embraced by our community. We don't always agree with them, but they have our respect. For example, take Ellie Stein whose arguments generally make total sense and who I respect. I met her in 1999 at a conference and we spent an hour or so talking.

    So the question is, if we get along with many psychiatrists and psychologists, why do we have a problem with the proponents of the dysfunctional belief model? Why is almost nobody outside our community asking this question?

    Well the Countess of Marr is asking some very good questions. I can't wait to hear some replies.
     
    HTree, justy, Merry and 5 others like this.
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    Why would Saint Simon play the victim? Wikipedia says some people play the victim to manipulate others. But that can't be our man Simon. As a psychiatrist he wouldn't even know how to manipulate people. And after 25 years working with patients like us, Simon wouldn't know how to do that to any of us. And that wouldn't have been happening to some members here recently, right?
    http://en.wikipedia.org/wiki/Victim_playing

    Sometimes "Lady" is more than just a title. I think we are lucky to have her.
     
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  9. alex3619

    alex3619 Senior Member

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    Politics and science are different pursuits. In entering into polical rhetoric its a whole new ball game. Psychiatrists know psychology, but lifelong politicians know politics.
     
    ukxmrv likes this.
  10. Sasha

    Sasha Fine, thank you

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    Hence the bit about him being too tight to buy her lunch, presumably! :)
     
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  11. Min

    Min Senior Member

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    This wonderful woman is now on my Christmas card list. \

    Is there a real bravery award we can nominate her for? ;)
     
  12. user9876

    user9876 Senior Member

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    The piece about after her evidence he harassed her for a meeting. I seem to remember that after Sonia Pouton published a sympathetic article he rang her up to try to put her right. I suspect he feels he can sucessfuly manipulate things behind the scenes but its much harder now information is more open and people can easily communicate on the internet.

    The thing I think the countess of Mar is wrong about is saying its about economics. I think people like Wessely and Crawley are trying to build their own little empire and are distressed as they see it crumbling. Looking at their papers they are third rate academics with ambition hence they have tried to dominate a less than popular area of medicine.

    Don't expect him to answer the questions since he only engages in a debate on pieces of his choosing. But expect more stories of extremists, militants and death threats.
     
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  13. Simon

    Simon

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    Anyone got a link to the Independent on Sunday correspondence where Simon Wessely claimes the Countess is harassing him? Would be good to see exactly what SW regards as harassment. Thanks
     
  14. maryb

    maryb iherb code TAK122

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    @user9878 I think she's right and it is about economics, Wessley sold CBT and GET to the NHS who love the fact that they already have the workforce eg. too many physios,- they double as ME therapists. Its so easy for them thats why Wessley has been so successful, if his treatment cost many millions it wouldn't happen, it would be questioned and someone would come up with the answer, hang on isn't this a physical illness what are we doing here?
     
  15. urbantravels

    urbantravels disjecta membra

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    Hot damn, but nobody can administer a slap-down quite like the British upper crust. Americans can only DREAM of being this cutting.

    Also, "traduced." LOVE

    Is this open letter posted somewhere on the Internet other than as a discussion forum post? I would like to be able to link to it somewhere more official.

    Can some of you Brits explain to me what the powers of the House of Lords are and are not?

    And who is the Countess of Mar, and how did she get involved in ME advocacy?
     
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  16. Ritto

    Ritto

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  17. Merry

    Merry Senior Member

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    What a ridiculous little man. The lunch scene is hilarious and definitely should be included in the screenplay that SilverbladeTE, alex3619, and justy are, I trust, busy working on.
     
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  18. Sean

    Sean Senior Member

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    Great letter. Much thanks to Lady Mar.

    Ha ha ha ha ha...


    It is about economics, and egos, and careers, and morality play ideology. A very nasty confluence of 'interests'.
     
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  19. ukxmrv

    ukxmrv Senior Member

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    I guess if we use the "follow the money" idea we end up with it

    1. furthering the careers of Wessely, White, Crawley etc. NHS public money goes straight into their pockets. They only need to continue to be employed to get a well paid public pension.

    2. Insurance companies paying less out. They also pay anti-ME docs to act as their advisors and as experts in cases

    3. The NHS not having to treat us except with CBT and GET which many patients simply won't do because it doesn't work. Many long term ME patients go with out normal NHS medical help as they are at home or have been treated badly and avoid doctors

    4. The Medical Research Council not having to spend money on research unless it is to the Psych crowd (cheaper than the money spent on HIV/AIDS I guess)

    If the members of each of the different groups are not directly lining their pockets with money from the public purse (my taxes!) then they are saving money for their masters.
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    we should nominate her for next years 'John Maddox Price' for standing up to wankers in science. :thumbsup:
     
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