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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. Daisymay

    Daisymay Senior Member

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    Posted on behalf of Margaret Williams, permission to repost:


    http://www.meactionuk.org.uk/Wessely-is-misunderstood.htm


    Professor Simon Wessely says he is misunderstood

    Margaret Williams 27th November 2012



    On his up-dated website (“Misunderstandings and Misperceptions” http://www.simonwessely.com/misund.html) Simon Wessely writes about the BMJ 2002 poll of “non-diseases” and states: “I had nothing to do with the poll or choice of subject, nor did I suggest ME or CFS as a non disease”. It was, however, commonly understood at the time from sources close to him that he was involved with the BMJ poll and, given his own record, it may not be unreasonable to believe that he was involved with it.

    He certainly wrote in support of the poll (BMJ 27th February 2002): “The BMJ’s decision to extend participatory democracy to the question of disease – legitimate or otherwise, is important not so much for the results (which along with bags under the eyes, freckles, big ears and gap teeth, included ME/CFS in the BMJ’s list of suggested non-diseases best left medically untreated) but because it happened at all”.

    Wessely went on to discuss: “how professions control and define their authority”, asking “why the outrage exhibited by so many of the correspondents?”.

    He continued: “I suspect it comes from a failure to recognise different concepts of illness and disease….Let us take the example of chronic fatigue syndrome…Few now could question that CFS is indeed an illness….But is it a disease?...Is CFS a disease?...Not yet….Previously apparently sound entities lose their disease status under the cold light of scientific scrutiny….Crudely handled, medicalisation can perpetuate disability”.

    On 17th June 2002 The Times (online) published an article quoting Wessely: “Many of the conditions recognised today were unheard of in the past, from allergies to chronic fatigue syndrome. ‘People are increasingly likely to see their symptoms as representing some potentially serious and certainly biomedical process’ says Wessely, who believes that this can be misleading at best and dangerous at worst”.

    From the above, it is difficult not to conclude that Wessely agreed with the poll’s findings in relation to ME/CFS, especially as he is on record as arguing that ME is merely “a belief” that one has a disease called ME and that it is “part of the world of myth” (9th Eliot Slater Memorial Lecture, 12th May 1994).

    In an article in the Independent in Sunday calling for him to be stripped of the inaugural John Maddox Prize (ME: bitterest row yet in long saga; 25th November 2012), Wessely stated: “I have never said that CFS is all in the mind. I do not believe that, and have never written that”.

    Given this clarification from Wessely himself, it is curious that Wessely gave the keynote lecture at “The International Congress on Somatisation Disorders – New Approaches and Treatment” in Marburg, Germany held on 21-24 February 2002, and that his lecture (on 23rd February 2002) was entitled “The chronic fatigue syndrome and the ‘S word’ ”. The definition of somatoform disorder is “emotional distress experienced as physical symptoms”. At that same congress, on 21st February 2002 Professor Michael Sharpe spoke on “Management of somatoform syndromes in primary care”, describing them as “somatic symptoms without evidence of disease”.

    It is even more curious that on 10th April 2002, in written answers to questions put to him by Trevor Wainwright (one being why he classified (ME)CFS as a somatoform disorder when ICD-10 classifies it as a neurological disorder), Wessely wrote: “I don’t classify CFS as a somatoform disorder”.

    Certainly Wessely’s colleagues are on record stating that Wessely regards ME/CFS as “somatisation par excellence” (J Psychosom Res 1994:38:2:89-98).


    It will remembered that the original PACE Trial CBT Manual for Therapists of June 2002 (of which Wessely was a co-author) says: “CBT is based on a cognitive behavioural model of CFS. According to the model the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patient's emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability”.

    It would be hard to find a better description of a somatoform disorder.

    In answer to another question posed by Trevor Wainwright (“How do you manage to manipulate the broadsheet press to perpetuate your views even when the Chief Medical Officer won’t support (them)?”, Wessely said: “What a question… The real scandal is that most of the coverage of CFS/ME is the usual junk science and exaggerated claims made by people with financial interests”.

    On 19th December 2002 one internationally known psychiatrist wrote about Wessely’s discrepant statements about the same issue: “Considering the thrust of his views there seems to me to be deception hiding behind semantics” (personal communication).

    Who could argue with that?
     
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  2. allyb

    allyb Senior Member



    I am qualified in CBT I could help him?............ but then again I'm not a magician.:rolleyes:

    allyb ;)
     
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  3. Firestormm

    Firestormm Guest

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    Perhaps everyone who is interested should at least read his blog instead of relying on an 'interpretation' when some of the things being challenged by Wessely (including the misquotes) have perhaps originated with or been promoted by the preceding source:

    And:

    First time I've actually visited his website. There's this also - if anyone wants to read it:
    CHRONIC FATIGUE SYNDROME: A PERSONAL ACCOUNT which talks about his involvement with the condition from year dot and must be the 'companion essay' he refers to at the top of the post above.

    I will need to read everything, including Margaret's initiating response tomorrow. Am bushed today.
     
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  4. user9876

    user9876 Senior Member

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    I always thought Ean Proctor story was about the way children with ME were (and still are) treated. The acusations against Wessely were that he was involved in his initial diagnosis and sectioning rather than the abuse that he suffered in the hospital on the isle of man.

    CFS Central have a report
    http://www.cfscentral.com/2010/06/hard-cell.html
    Which points to Wessely's medical advice which I believe is for sectioning rather than care proceedings.
    http://mindykitei.cfscentral.home.comcast.net/~mindykitei.cfscentral/letters/Wessely, June 10, 1988.pdf

    Perhaps this also gives indications as to how he sees ME?

    Maybe acusations get exagerated but I wonder if the responses are also being spun. Reading the letter that he wrote it sounds like a pervasive refusal syndrome diagnosis without the name. Which is commonly given to children with ME who have been ill for too long, not as far as I know by Wessley, but by an "expert paediatrician".
     
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  5. Esther12

    Esther12 Senior Member

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    I've not got time to look at this properly, and only read the bits from Wessely.

    I did a quick google for some of the allegations he was refuting, and could not find them having been made in the manner he quoted (this was only a very quick search, so I could well have missed something).

    Something like this: “All the MRC money for CFS has gone to Wessely” seems crazy, and I've not seen anyone make that claim. Actually, it seems so crazy that if I saw such a claim, I'd assume it was meant as hyperbole rather than something to be taken literally.

    re UNUM: He didn't mention his contribution to their CMO's report, which I already posted here: http://forums.phoenixrising.me/inde...essely-and-all-in-the-mind.13979/#post-232006

    Maybe he missed other things out too.

    re his correspondence with Aylward and the DWP: It was much more than one letter, and from what I remember he was arguing against classing ME as a neurological condition, and insisting he would organise a campaign against the DWP's classifications for mental health disorders if they were to class ME in this way. I understand that some further info has been released recently, but I've still not looked through it, I think some details should be available here: http://valerieeliotsmith.wordpress....he-secret-files-on-mecfs-wessely-and-the-wok/

    Also - Aylward was clearly a key figure in the recent benefits reforms, and was working at the UNUM Centre for Psychosocial and Disability Research. In White's book on Biopsychosocial medicine Aylward, Wessely, White and Chalder are all chatting amongst each other as if they know each other - it seems rather strange for Wessely, a key promoter of BPS approaches to disability, to be acting as if he had no role in the DWP's move to a BPS approach to disability benefits.

    re his Personal Story: I wrote an initial response to that here: http://forums.phoenixrising.me/index.php?entries/simon-wesselys-personal-story-annotated.1054/

    I've been meaning to go back to it and add in some references, as it started just being my thought as I went along reading Wessely's piece, but ended up being even long than what Wessely had written.

    There definitely are problems with people taking Wessely quotes out of context in a misleading way. His in context alternatives often seem worse to me though.
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    I agree. I have never heard anyone say he threw the kid in the pool, but rather that he was involved in his mis-diagnosis that led to the mis-treatment at the hands of others.

    I think he's exaggerating these claims to make us sound nuts, and to make himself sound more wronged. If he's going to complain about ME patients misquoting him, he should be careful to avoid doing the same. But his "misunderstood" page sounds like yet another excuse for him to take a swing at ME patients.
     
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  7. snowathlete

    snowathlete

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    I agree, it's hard to know what is fact, I expect the truth lies somewhere between the two stories. One clear fact is that this is a phyciatrist heavily involved with ME/CFS over the years, despite the fact that it has been classed as Neurological by WHO since the 60s, and the fact that it is clear to any lay-man who takes the time to look properly, that this is not a psycological illness. That alone, rings alarm bells.

    He clearly feels strongly that he has been misunderstood. If that is so, would he support a formal and independant review to establish and expose the facts?
    Either, he is guilty of these things as some claim in which case there should be some action, or he is a victim in all this and that ought to be corrected.


    One thing i find strange on his site is this quote:

    If he was paid to do those talks (which I assume would be the norm), then he has been employed by UNUM, surely?
     
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  8. Stukindawski

    Stukindawski

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    He'd bury that in semantics as an 'appearance fee' probably. Selling his services as an orator. It probably stands up legally too. Bit like a band playing a gig more than once at the same pub.

    But the repetition probably is grounds for a developing COI.

    Edit: Oh I just wanted to add, I think PD White's links with Unum might be a tad more interesting, but it's been a while since I've trawled through those walls of text.
     
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  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Yeah, he's as "misunderstood" as my anal bean trumpet playing "Colonel Bogie" as we march past him an' his cronies, giving them all the "salute"!
    Prrrrbbbrbbrbbbbbrbbb! :p

    tumblr_m6a92mQJWQ1r35e5l.jpg

     
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  10. Sean

    Sean Senior Member

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    “I have never said that CFS is all in the mind. I do not believe that, and have never written that”.

    The above quote is a good example of the absolutist straw men he deliberately sets up to misrepresent his critics.

    Read it carefully: He is not saying that CFS is not primarily psychogenic.

    Slippery as ever.
     
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  11. alex3619

    alex3619 Senior Member

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    I didn't conspire with aliens. I didn't work as a PR man for a major drug cartel. I didn't invent a time machine and go back in time to plagiarize future writers before they wrote their opus magnus.

    Denials are indeed slippery. What are they denying?

    I believe I do recall some comment about Wessely throwing a child in a pool, probably Ean Proctor. This was then corrected. I do think people do misunderstand him some of the time, but thats to be expected. So Simon is quite correct when his statement is taken out of context ... and its beside the point. We do understand a lot of the hypothetical psychogenic views that are being pushed as fact. This whole argument is a diversionary tactic though not an unreasonable thing for someone in his position to do.

    Quoting someone out of context is always going to happen though not desirable. Context is far more than just the few sentences before or after a comment, or the paragraph before or after as well. From a linguistic point of view context is the surrounding text and argument. From a systems theory point of view context is just a simplification, to get perspective you need to look at a large range of factors. The world view, arguments, logic, circumstances and interactions with other factors are all important. To understand the impact of a few sentences from someone you need to look at their history, their training, all their text you can find, the arguments used, the patterns of arguments, the logical fallacies made and ignored, and whether or not an argument is rational or uses emotional rhetoric. Even then I am just giving a snapshot - we are never going to understand him, just as he is never going to understand us. The best we can do is to get close to the truth.

    Similarly I do think he receives hate mail and probably threatening letters. I don't dispute that as its to be expected, though again not desirable. How this is spun in the media is the concern. That is what needs to be addressed. Such mail etc. cannot be prevented, though it can be dissuaded to some extent. Its not desirable socially, its not desirable for advocacy, and it may sometimes be illegal. What can be done though is to put it in perspective.

    One of the things that concerns me is the language used in a lot of this by proponents of the biopsychosocial view have flexible meanings. In one perspective they mean one thing, in another they mean something else. When we isolate some quote we take one meaning. When proponents isolate a quote they are free to comment on the meaning differently in different circumstances. One of the things I am going to be looking for is how the meaning of the words changes in different circumstances. I will also be looking for the meaning of the words to change in the middle of an argument. An argument might sound good, but if the meaning of a word at the start is different to the meaning at the finish, then its not a valid argument.

    On emotional rhetoric I will have much more to say over time, I am still doing investigation.

    I am all for using anger or any other emotion to give impetus to advocacy. This needs direction though, and direction should be based on reason not emotion. They work together. Emotion is about why we do things to an extent, reason is about what we do. Pure reason can not motivate people, and acting on emotion in the absence of reason can lead people to make unnecessary and sometimes stupid mistakes.

    Bye, Alex
     
  12. Jarod

    Jarod Senior Member

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    Who is going to out-debate a psyhiatrist? You nailed it @silverblade.
    Need to be careful not to screw up the work of other adovcates though. :thumbsup:

    I have to admit I just fell out of bed laughing. One really needs to play the youtube video while appreciating the artwork to get the full affect.

    Things are a mess. Not just with CFS. Give everybody a few days. Tensions have gotten too high.
     
  13. Enid

    Enid Senior Member

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    One really wants to disengage permanently with SW and all those of psyche inclinations. The scientific research findings are now in place for the pathologies found in the illness ME. There is no doubt whatsoever that he individually (through weight in UK medicine) or others who are taught or taken up (3 A&E Docs newly trained diagnosed me "just all in your mind") are the legacy left here.
     
  14. alex3619

    alex3619 Senior Member

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    Yes Jarod, I didn't quite fall out of my seat, but I did chuckle. :) Watch the (?) British commanding officer's facial expression. Early psychological warfare?

    Emotion is important in political rhetoric. It reaches people who might not be prepared to engage with reason. How we target such rhetoric still has to be rational though for it to have targeted impact.
     
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  15. barbc56

    barbc56 Senior Member

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    Right now I am in a major crash. I know, violins playing and this too shall pass? I only mention this as I want to get better. I am also angry. But when I read things such as posts where inappropriate words and pictures/videos are used to make a point, it makes me wonder how much these type of posts hinder any progress that might be out there and used against us.

    We have to be careful about walking right into the stereotype we have all been trying to avoid.
     
  16. Jarod

    Jarod Senior Member

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    Your right Alex. We are humans. Thankfully almost everybody is rational most of the time.

    It's kind of the healing process we are all going through. I think we are about over this fighting and will be much better for it later on. Need to see some real progrss though to help alieviate the presure.

    When one side is totally non-compliant and has outsized power, a huge middle finger just helps get by the frustration some days.
     
  17. barbc56

    barbc56 Senior Member

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    Really?? I would say just the opposite. If someone is not prepared to engage with reason, then I think tactics like this will only serve to turn people off and like the boy who cried wolf, any statement, rational or not, will be discounted.
     
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  18. Enid

    Enid Senior Member

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    Reason and science a thousand per cent yes - the hey but "we are just trying aid" holds nothing until people like this accept their own ignorance.
     
  19. alex3619

    alex3619 Senior Member

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    Warning: Philosophy Alert

    Tactics like this work all the time, to the total befudlement of rationalists. I believe in reason as a tool but unreason rules more than reason. It shouldn't be that way in an ideal world, but we are not living in an ideal world.

    Advertising, spin, pursuasion (other than rational debate, but even then emotive issues come into play) and scams all use emotional pursuasion. So do people in everyday life. We are not rational animals. We are animals who can use reason as a tool, and a powerful tool at that, but its not the universal mode of thinking. Almost everyone can engage in some amount of rational thinking, and with training can do this much better. Any professional, including scientists, should be (but are not always) taught to reason effectively within their discipline. Most people are however never taught to reason effectively. Its a major failing of education systems everywhere. This has not very much to do with intelligence, though aspects of intelligence do permit better use of reason.

    A rational world is an ideal utopia, and its my ideal utopia as well. It doesn't exist, but its always something we can work toward. I am not advocating unreasoned responses. I am advocating engaging both reason and emotion. I will be saying very much more on this next year.

    Look at the recent US election. It doesn't matter who you are in favour of. How do you explain so many people passionately supporting a position other than yours? Sure, some if it might fit with enlightened self interest, the other side might offer things your side doesn't, but is this right in all cases? Is everyone being rational? Or is there just a lot of rationalizing going on? So many arguments on each side about the other being irrational do not stand up under the light of reason.

    Reason is also bounded by information. Reason derives from what you know and how you process that. We know much of what we read in the media is spin, distorted or wrong, yet we still have to base our decisions on something. Most people do not have the time to be rational about very much, only topics that really interest them. Nobody can be rational about everything. We don't have the time or the motivation to do that. The best people can manage is to be as reasonable as they can about issues that are important to them.

    One of the points of potential confusion from may posts my derive from my using the word emotion very broadly. Emotion does not just mean raw emotion, feelings, its also about emotional nuances. Compare these two statements. "People with CFS are lazy slackers and couldn't be bothered getting off their arse to help themselves." "People with ME are too exhausted to do very much and struggle with the basics of day to day living." Both imply that people with ME or CFS don't do very much but under that are not-so-subtle implications, including emotive implications, that reveal a person's point of view.

    Bye, Alex
     
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  20. Enid

    Enid Senior Member

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    Don't agree alex - it's the history of medince involved - advances, failures - and that any current thinking Doc recognises. IF THEY HAVE THE REQUIRED HUMILITY to learn.

    There is no room for chuckling when you've been through the worst the "medics" have to offer here.
     

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