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Today Wessely authors an article in the Spectator about ME extremists

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 26, 2011.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.spectator.co.uk/essays/all/7190703/mind-the-gap.thtml

    Prof Wessely writes an article for the Spectator newspaper today. As ever the chameleon, he paints the protest against the huge harm he has done to the patient community as being undertaken by a few extremists who are damaging the collective health of all ME patients. In essence, he blames us for his crimes and sounds oh so reasonable.

    There is a comments section.


    Mind the gap
    SIMON WESSELY27 AUGUST 2011
    Its time to stop separating psychiatry and neurology

    In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queens Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). I cant understand why they think its an encephalomyelitis, one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: Dear Simon, please see this patient. There is nothing wrong with her.

    But there was. The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS). At that time, patients at the Square, as the hospital was called, were usually told that the only thing they could do was to rest and either hope that the condition would go away or that doctors would come up with a magic bullet.

    I started, with a group of other doctors, to try to do better. Over the next two decades, we developed two different approaches to rehabilitating CFS patients, based on the idea that even if we didnt know what caused the illness, we could still help patients manage their symptoms and regain control of their lives. Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked. In 2007, some 20 years after we started, the National Institute for Health and Clinical Excellence approved both treatments as safe and effective.

    I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers. We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is all in the mind, i.e. non-existent which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.

    Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a rat who should be thrown into a cage with infected mice. One blogger wrote a post addressed to me in which he called me the born personal physician of Heydrich, Goebbels or Hitler. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.

    OK, lets keep a sense of proportion. Its only a small number of people who do this. I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.

    For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.

    My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one. But three things here anger me. First, the repeated claim that we dont think our patients have an illness. They do, and to say otherwise is insulting.

    Second, even if you dont think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queens Square are the best we have. They are by no means a cure but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinsons, schizophrenia and many more. No one would advocate leaving them without any prospect of treatment.

    And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.

    Its not so much the threatening emails and blogs that rile. Its the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word not deleted, for instance. And transcripts of our speeches are sometimes altered so that yes becomes no.

    How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers who did believe that many illnesses were all in the mind led to an increasing separation of the two disciplines.

    By and large, the current generation of psychiatrists accept that many disorders autism, schizophrenia, bipolar, OCD, Alzheimers and others are disorders of brain function. Yet the division between neurology and psychiatry remains. It is almost impossible, for example, to train in both fields in this country, unlike in Germany. A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. If we could identify the problem with the brain, we could tell patients its not all in their heads, he said, without apparent irony.

    We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the all in the mind slur, and let us get on with our jobs improving the treatment of patients and their illnesses
     
  2. Enid

    Enid Senior Member

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    I see his Media Centre hasn't run out of steam. What he fails to grasp in his attempt to merge psychiatry and neurology is that it is of no value to us. ME is a multi-system disease - the Neuro being only part. My Consultant Neurologist accepting an abnormal MRI scan admitted he did not understand (too many other symptoms) and couldn't aid with regret but thought viral. He asked me to find a specialist in ME - ie outside his particular field and he would release his own findings.

    Rather sly this - and the constant referral to a few "incidents" directed against a handful of Psyches in the past only. Most criticism has come from scientists. If he read the International Concensus he might get a better picture of the advances in understanding ME. And at the same time stop what is now amounting to a harrying and deliberate smear campaign to discredit a whole community mostly too ill to respond. Does he seriously think that anyone would accept the offer of CBT and GET when one can at last find Doctors finding and addressing the underlying causes (pathologies) and treating.
     
  3. Merry

    Merry Senior Member

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    So now Simon Wessely's a Neuroscientist.

    Or something really, really close (it would be so unfair to cut someone like him off from research funds).

    And the moment I post this response, I am an internet extremist.
     
  4. orion

    orion Senior Member

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    Wow, yet another cut'n'paste job from the Science Media Centre. Those guys must be more desperate than I realised.
     
  5. Dolphin

    Dolphin Senior Member

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    E-mail address for Spectator letters

    I see the Spectator have http://www.spectator.co.uk/corporate/contact-us/

    Can anyone see the longest and shortest letters? How many words do they have (approx. would be ok)? There is a chance a magazine might not want a very short letter e.g. 50 words, so Id like to have an idea what sort of letters they like. Should be useful for other people also.
     
  6. Enid

    Enid Senior Member

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  7. Dolphin

    Dolphin Senior Member

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    If the people re-submitted them as letters, perhaps they might be published. But usually (for other media outlets) online comments aren't considered for publication (presumably because the publication doesn't have contact details to include with a letter and it may be too much trouble esp. with deadlines to try to see if they can contact the person). So if somebody is aiming for a printed letter to the editor, I think it's best to E-mail it in (unless a publication specifically says it will consider comments for publication e.g. like the BMJ, but then it asks for lots of contact details for e-submissions).
     
  8. Enid

    Enid Senior Member

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    Thanks Dolphin - I'm just going to post a comment (my limit). I notice Rod Liddle (of earlier - can't recall which pub - notoriety. Letters to the Editor which presumably could be selected for publication require "Office" and details. Also note they receive thousands of emails so just might get lost in the volume.
     
  9. Dolphin

    Dolphin Senior Member

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    I'm not exactly sure what you are saying - are you saying as you said in some thread that because you don't have Microsoft office, you can't submit a letter? I don't believe that - letters are submitted in plain text E-mails - I have had lots published in various publications over the years.

    If you are saying in the Sunday Times, they only published people who were associated with charities, that is true; however, the (weekday) Times published five letters recently, and only two of the people gave ME patient group details - the other three were just "ordinary" members of the public.
     
  10. Enid

    Enid Senior Member

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    I see what you are saying about letters by email - many thanks.
     
  11. Min

    Min Senior Member

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    Dr Charles Shepherd of the MEA writes on his facebook page of the recent media articles of Wessely etc claiming harassment from ME sufferers:

    "My own view is that most of the people who do this have a mental health or personality problem rather than having ME/CFS."
     
  12. Enid

    Enid Senior Member

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    I've not really looked into his perceived harassment in detail but could well imagine it contains genuine scientific criticisms as well as some forced in the early days into psychiatric treatment. It wasn't so long ago here that sufferers were forced into CBT on that or nothing basis and diagnosed depressives. Be interesting to look into th few particular instances (history) rather than CS's blanket mental/personality problem. A few "instances" whatever do not excuse SW's current media campaign to discredit all who suffer from ME. Can't see what CS is playing at. I've not heard of any physical abuse or "murder" - shouldn't SW stop to consider the reasons for such intensity and tell us all why. Give us ALL the facts not just claims of abuse surrounding each case.
     
  13. Dolphin

    Dolphin Senior Member

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    Looks like CS can't win whatever he says. People weren't happy with him saying there could have been any number of cases; but now if distance is put between who might have threatened, and people with M.E., people aren't happy either. I don't know what happened but it seems that CS is in a no-win situation. Where are the other medical doctors or researchers to speak up?
     
  14. Enid

    Enid Senior Member

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    I must say I don't think in terms of "winners" or "loosers" at all - just watch now research is well on the way to unravelling this multi-system disease (formally claimed by the Psyches as their own which we know it's not and never was). Opinions don't matter - the science does and then no room for any more argument.
     
  15. Min

    Min Senior Member

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  16. Esther12

    Esther12 Senior Member

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    Didn't he used to post here?

    He's twenty years old, and has CFS. Only comment if you're going to do so in a sympathetic manner imo. (Also - while I disagree with a lot of the blog, and the analysis is pretty light-weight, I don't see why you'd describe it as bigoted.)
     
  17. Enid

    Enid Senior Member

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    Evidence is the thing but I don't have it - the Afghanistan comment by Wessely is somewhere about and meant of course unkindly. But he has a very big and influential platform of course to speak.
     
  18. Nielk

    Nielk

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    I am thinking that instead of always posting, e-mailing responses to his articles, what if we all just totally IGNORE it.
    No comment at all. No mention of it, as if it didn't happen at all. I think it's a more powerful response especially since what he is looking for is attention.
    Whatever has been done till now, has not worked. I would think that let's just make believe he doesn't exist or at least totally ignore what he says or what he prints.
    As if he is a non-entity.
    It's like a funny sign I saw recently. " if a man is in a forest by himself with no women around, is he still wrong about what he says?"
    I say, let's ignore him.
     
  19. Enid

    Enid Senior Member

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    I quite agree Nielk - just lost any interest now in these blatant self promotions in the media. And events, research and pathologies, treatments etc have left him (& co) far behind. Can't even raise any feelings about it anymore ....gone, gone, gone ! Hooray.
     
  20. Ember

    Ember Senior Member

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    This seems to me to be a huge face-saving display by a man who has seen the writing on the wall. His latest spin...

    This has all been a big misunderstanding started by Americans:

    The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS).

    I never said it was a false illness belief:

    Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is all in the mind, i.e. non-existent which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.

    I may have exaggerated a bit:

    OK, lets keep a sense of proportion. Its only a small number of people who do this.

    But don't remove me from the field:

    For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.

    I never said I could cure anything:

    Second, even if you dont think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queens Square are the best we have. They are by no means a cure

    I just got misquoted:

    Its not so much the threatening emails and blogs that rile. Its the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word not deleted, for instance. And transcripts of our speeches are sometimes altered so that yes becomes no.

    It wasn't my fault that the research went nowhere:

    And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.

    Freud did it:

    How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers who did believe that many illnesses were all in the mind led to an increasing separation of the two disciplines.

    Did I say Americans are silly?

    A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. If we could identify the problem with the brain, we could tell patients its not all in their heads, he said, without apparent irony.

    By the way, I'm a neurologist now:

    ...merging psychiatry and neurology into one category. This would rid us of the all in the mind slur, and let us get on with our jobs improving the treatment of patients and their illnesses.

    I agree. It's all but over.
     
    Roy S, Merry, Sean and 2 others like this.

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