Thursday, December 20, 2012

Simon Wessely do not want to answer.

Countess of Mar, a UK member of parliament who has been asking tough questions on behalf of patients with ME in the UK, has been pressing simon wessely to answer this upmost important question.

If you don't know simon wessely, he is a psychiatrist proponent of cognitive behavioral therapy and graded exercise therapy as the sole therapies for patients with ME. However, it is possible that today he would attempt to protect himself and say "you took my words out of context" or something to make him look as the good guy.

simon wessely, however is not the good guy in this story. He has effectively blocked biomedical research from happening in the UK and around the world. He is controlling what information goes to the media and what is gagged from them, notably good biomedical research. He has spread his beliefs, and yes they are beliefs, all around the world, telling our doctors we patients with ME had symptoms of "mass hysteria" (and if you didn't know, hysteria comes from the word uterus) and "false illness beliefs". This has gone on for over 25 years.

So Countess of Mar is asking the tough questions. "In the light of these results, do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?"

And s.w. goes silent. Does not want to answer. Takes long detours. Does not want to answer publicly. And when forced to (to save face)- he still refuses to answer the question, taking a long detour in the country side. Probably he will go cry to the media that he is being bullied by Countess of Mar at first chance he gets, because that's what he does. 

But he's a big boy controlling a lot of strings. 

And patients, they have had enough. Well that was an assumption. I know I have. And I am in Canada. 

As a parallel I am still waiting for the Canadian Health Minister to provide me with an answer of my February 16th 2012's letter (which can be seen here). No comments about my 2400 name petition, and still no response from the Order Paper #1044 which was due on December 15th, but since the government was no longer sitting on Dec. 15th, the response is being delayed until the House of Commons opens for business again mid January. The federal is funding 0$ for research for 411 500 patients with ME/CFS in Canada, and seemingly has no intention to pay attention to us patients with no health care  because simply put, it does nothing for their image to fund such disease. 

So here you go. Returning to simon wessely and Countess of Mar. I am sharing the dialog with the hope not only to entertain you but also to support my belief that s.w. continues to cause great harm to our community of very sick patients. 

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
Exhibit 2: December 12th Countess to simon

Then simon answers, and the Countess replies:
From SW 12 Dec 2012

Dear Lady Mar
May I ask, genuinely respectfully, am I writing to you, or am I writing to all the internet?
When you wrote to me, you said it was an “open letter”, and indeed, it appeared on the internet as you sent it me
Personally, I don’t particularly like that way of communicating. If I write to a newspaper, or have a paper in a journal, then clearly that is public. But if I write to a private individual, then that is private, unless I indicate otherwise (as you did in your letter to me) or the other person asks for permission to repost, I think the word is.
So if we are to pursue this, can I first of all establish what is the basis of our correspondence. Is it private, or is it public? I can cope with either, but I think it’s only fair to both of us to establish which it is.
Simon Wessely

From: MAR, Countess
Sent: 12 December 2012 17:12
To: 'Wessely, Simon'
Subject: RE: My letter of 5 December 2012
Dear Professor Wessely
Thank you for responding to my letter of 12 December 2012.
As this correspondence began with an open letter I believe that it should continue as such. Unless you can give very good reasons why it should not, I can see no reason why your private response should be any different from your public response. Your answer to my question should be the same to whomever you reply.
Much of this debate has been conducted in the public arena, but a public arena from which people with ME/CFS are largely excluded. I am sure that you are aware that they do not have the same access to press, radio and television as you do. As we are concerned with their health, they should be privy to your honest opinion. Do you still believe that ME/CFS is “perpetuated predominantly by dysfunctional beliefs and coping behaviours”?
I still look forward to your reply.
Yours sincerely
Exhibit 3: simon to Countess of Mar and Countess of Mar answers: December 17th

More of wessely's words here, here and the lovely piece by Margaret Williams called "wessely is misunderstood"

And I go on, and on, and on. There is so much more to say. I will try to update as more conversations come, if they come.