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Oh Lord, Please Dont Let Me Be Misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Jan 18, 2012.

  1. Daisymay

    Daisymay Senior Member

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    Oh Lord, Please Dont Let Me Be Misunderstood


    Margaret Williams 16th January 2012


    Professor Simon Wessely has recently published his own account of his involvement since the late 1980s with what he refers to as Chronic Fatigue Syndrome but does not clarify that he and his colleagues regard CFS as synonymous with ME and that they regard and treatit as a behavioural disorder (CFS Personal Story: www.simonwessely.com/faq.html).


    His story as published on his new website makes a smooth and impressive read, at least for the uninitiated, as it refers to numerous biomedical studies with which Wessely says he was involved during his CFS career.


    What he fails to make clear is the number of those biomedical studies that had negative findings, or that he uses the Oxford case definition that specifically excludes those with a neurological disorder such as ME, so he may be studying only those with unexplained fatigue.


    Equally, he claims considerable success with cognitive behavioural therapy but again he does not explain the cardinal importance of case definition.


    Wessely states that he is proud of having contributed to neuroendocrine studies and seems to be claiming the honour for having discovered HPA axis dysfunction in CFS, whereas this was first demonstrated by Mark Demitrack in the US (Journal of Clinical Endocrinology and Metabolism 1991:73:6:1224-1234; Biol Psychiatry 1992:32:1065-1077). Wessely specifically mentions Professor Tony Cleare (a member of Wesselys group) and his work on neuroendocrine aspects of CFS, but does not explain that Cleare regards the disorder as being most likely of biopsychosocial origin, concluding that there is no evidence for a specific or uniform dysfunction of the HPA axis and that confounding factors such as inactivity and psychiatric comorbidity may influence the observed endocrine changes (Endocrine Reviews 2003:24:236-252). Cleare is also on record as stating that HPA axis changes can be reversed by modifying behavioural features of the illness, such as inactivity (and) deconditioning and that current evidence suggests that neuroendocrine changes are not a central core of the condition, but occurat least partly as a response to certain features of the illness such as physical deconditioning (TRENDS in Endocrinology and Metabolism 2004:15:2). Notably, Wessely fails to report his own view on the cortisol abnormality: I will argue that this line here represents not the line between low and high cortisol responsesbut the line between real and unreal illness (Microbes, Mental illness, the Media and ME: The Construction of Disease; 9th Eliot Slater lecture given at The Institute of Psychiatry, 12th May 1994).


    Wessely mentions the immunological studies with which he has been involved, but again he does not explain that his group failed to find the immunological abnormalities documented by experts such as Professor Nancy Klimas, nor that he argues against immunological testing, for example: Though disordered immunity and persisting viral infection have recently attracted attention, it is important that immunologists do not deflect attention away from the wider (ie. psychiatric) aspects of the chronic fatigue/postviral syndrome (Anthony David, Simon Wessely, Anthony Pelosi. Lancet 1988: July 9th: 100-101). Notably, in his CFS Personal Story Wessely says: We showed that immune dysfunction didnt relate to clinical outcomes but experts have found the exact opposite, for example: We demonstrated changes in different immunological parameters, each of which correlated with particular aspects of disease symptomatology (Hassan I, Weir WRC et al. Clin Immunol & Immunopathol 1998:87:1:60-67); The findings suggest that the degree of cellular immune activation is associated with severity of physical symptoms (Immunological Status Correlates with Severity of Physical Symptoms in Chronic Fatigue Syndrome Patients. S Wagner, N Klimas et al; Fourth International AACFS Research & Clinical Conference 1998; abstract page 28) and Among (ME)CFS subjects, those who had been sick longer had higher rates of autoantibodies (S Vernon et al. Journal of Autoimmune Diseases 2005: May 25th: 2:5).


    Wessely mentions his work looking at HLA phenotypes but does not reveal that his team found no association with any specific phenotype, whereas others have shown direct linkage: A significant association between CFIDS and the presence of HLA-DQ3 was noted (RH Keller, N Klimas et al. Clin Inf Dis 1994:18: (Suppl 1): S154-S156) and The frequency of the HLA-DQ1 antigen was increased in patients compared to controls. This association between (ME)CFS and the HLA-DQ1 antigen translates into a relative risk of 3.2 (RS Schacterle, Anthony L Komaroff et al. JCFS 2004:11(4):33-42).


    Wessely also fails to mention that in the 1996 Joint Royal Colleges Report on CFS his advice to Government bodies was that the reported biomedical abnormalities should not deflect the clinician away from the biopsychosocial approach and should not focus attention towards a search for an organic cause, or his recommendation that no advanced tests should be carried out on these patients when it is those very tests that reveal the organic nature of the disorder (Joint Royal Colleges Report 1996: CR54).


    He refers to his work on vitamin levels without mentioning his disparaging dismissal of vitamin supplementation or his unsupported conclusion that many people with CFS are taking vitamin B supplementation with no evidence of benefit (JRSM 1999:92:183-185).


    Wessely concedes that he has changed his writing style but does not appear to comprehend the extent to which his earlier published views are perceived almost universally as being denigratory and sometimes mocking (as is to be found, for example, in the audiotape and his own notes for his 1994 Eliot Slater lecture), nor does he mention the harm in the form of medical rejection and dismissal, as well as the financial hardship, that have resulted from the widespread adoption of his views by the medical fraternity, government departments and private health insurers.


    Indeed, he entirely fails to mention his published views, for example: neurasthenia would readily suffice for ME; It seems that ME sufferers prefer to feel that they have a real disease it is better for their self-esteem; many patients becomeover-sensitised to physical sensations; Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validityIt is also beneficial to self-esteem by protecting the individual from guilt and blame; that patients obtain secondary gain by adopting the sick role; that fear of illness is an important part of (the disorder); that patients are not suffering from any organic disorder because he believes their symptoms have no anatomical or physiological basis; that The term ME may mislead patients into believing they have a serious and specific pathological process and that Several studies (often Wesselys own) suggest that poor outcome is associated with social, psychological and cultural factors.


    Wessely says in his account of his involvement with CFS: I remain proud of the work myself and colleagues did in the early days of CFSBut there has been a downside, and here he appears to seek sympathy from his readers by referring to alleged threats made to him by activists.


    He continues: Right from the start, myself and all my colleagues had from the start (sic) been targeted by a small group of activists who (sic) mission was, and still is, to impede our work in as much as they are able. Thankfully they havent succeeded and wont.


    He goes on to say: I do not blame those who repeat some of the things they have read about me.I feel however differently towards those who originally extracted or altered the quotes, and persist in doing so over the years despite knowing that these are wrong.


    No, Professor Wessely: responsible people who quote your published or recorded spoken words can readily demonstrate that these are not wrong.


    He continues: So next time you come across something that purports to be an unfavourable or unflattering quote from myself or one of my colleagues, make sure you check it out first with the actual article.


    For those who wish to check it out first with the actual article and to verify for themselves the quotations from his own work to which attention needs to be repeatedly drawn but which Wessely now plays down, the full references can be accessed in Quotable Quotes Updated (www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf) and in Magical Medicine: how to make a disease disappear (www.meactionuk.org.uk/magical-medicine.htm).


    Readers of Professor Wesselys website may not recognise his version of medical history but they may recognise a recurring theme, which is his apparent lack of self awareness.


    He presents himself in a heroic role as a patient advocate determined to dispel unhelpful stereotypes whilst, many would argue, he is in fact the source of those stereotypes.


    He seems unable to grasp why those suffering from a disease he regards as somatisation par excellence, whose symptoms he describes as being perpetuated predominantly by dysfunctional illness beliefs and coping behaviours and whose [negative automatic thoughts] are explained as distortions of reality (Manual of cognitive-behavioural treatment for CFS, Chalder T, Deale A, Sharpe M, Wessely S. 19/6/2002) should fail to be grateful for his interventions.


    The essence of his apologia may perhaps amount to no more than two lines from a Nina Simone song:


    But I'm just a soul whose intentions are good;

    Oh Lord, please don't let me be misunderstood.
     
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  2. Daisymay

    Daisymay Senior Member

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  3. Enid

    Enid Senior Member

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    Speechless at this new manipulation of the facts and history - does he know anything about ME.
     
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  4. Patrick*

    Patrick* Formerly PWCalvin

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    Makes me wonder if he really believes his own hype, or if somewhere, deep down inside, he knows he's a double-talking hack.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    Tony Cleare's personal views aside, that is basically the only half decent neuropsychiatric research that has been done by those UK guys. If they want to insist that they aren't violating mind-body dualism, then they need to do far more of that sort of research and less CBT/GET/'illness belief' nonsense.
     
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  6. Valentijn

    Valentijn The Diabolic Logic

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    The impression I get from his website is that he knows his past behavior is unacceptable, and is now trying to spin it in a way that is more flattering to him. The entire effort has a smell of desperation ... like a CV/resume being updated by someone who thinks he'll need to be looking for a new job soon, and is trying to gloss over his unethical behavior at previous companies.
     
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  7. Desdinova

    Desdinova Senior Member

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    He's a Weasel but he's a very very smart Weasel he doesn't go into the... Hum lets say finer details keeping things vague to limit his exposure to the changes that time may bring. How long do studies remain in databases like Pub Med?
     
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  8. SOC

    SOC

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    Anyone have the feeling he was valiantly helping patients when he tripped and fell into the lifeboat just as it was descending?
     
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  9. Dreambirdie

    Dreambirdie work in progress

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    Now that's an understatement.
     
  10. Yeah, he knows he's in deep shit: he's going to be DESTROYED when ME is proven organic, treatable, and in worse case, transmissible.
    Also if the deep suspicion the involvement of himself and other phsychiatrists are linked ot insurance companies is proven in court...

    So, as the regime falls, as the "Arab Spring" sweeps through the scum-infested corridors of the British Establishment and Medical World, he's desperate to prove "He's a good man, misunderstood!"
    Bollocks, we understand him, all right! :p
     
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  11. Merry

    Merry Senior Member

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    writhing worm
     
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  12. biophile

    biophile Places I'd rather be.

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    Guilt by association and avoiding the stigma of the weasel stereotype

    Esther12 wrote a blog response to Wessely's new website (http://forums.phoenixrising.me/entry.php?1326-Simon-Wessely-s-personal-story-(annotated)).

    I think a few of his papers are useful, but Wessely did not get to his position by being the first to discover anything of fundamental importance, but by resonating within the status quo interpretation of CFS as a psycho>somatic functional illness and publishing in a prolific manner.

    He is in his mid 50's so is still relatively young and should be around for another 20-30 years, which should be enough time to see the cognitive behavioural model publicly exposed as the house of cards that it is, at least the blanket application to broadly-defined cohorts of "CFS/ME". I am much younger than Wessely, so even if we assume my life expentency is reduced by 20 years due to illness (in the worst case scenario), I should still live to see this day (for those here who may not be around anymore, you will be in my thoughts). LOL SilverbladeTE, "as the 'Arab Spring' sweeps through the scum-infested corridors of the British Establishment", I enjoy your more artistic descriptions.

    Reading the literature reveals that the pillars of this model are already crumbling around its proponents, they have little room to move without conceding that they were wrong or at least grossly overestimated the explanatory power of their hypothesis, and much of what they say is little more than smoke and mirrors when the claims are thoroughly investigated.

    The epidemiological and psychological risk studies he is proud of are flawed, the activity related and deconditioning component has been discredited, the fear-avoidance of movement component has been discredited, the supposed cognitive factor of "symptom focusing" and "belief in physical causes" seem to have limited or no predictive value in CBT response and may instead be indications of disease severity, the remaining pillar of self-efficacy is generic and not specific to CBT, the subjective reporting of improvement in a proportion of patients is not matched by objective improvements or employment outcomes and it is unclear how much of the reported "improvements" arise from methodological artifacts and biases.

    The Cochrane systematic reviews on CBT and GET are sobering for all the hype about CBT/GET (small-moderate temporary effects in self-reported measures of fatigue but nothing else), the PACE Trial required a lot of spin to squeeze out smallish results in subjective measures, and the FINE Trial was basically a failure. No, things aren't looking too good in cognitive behavioural land, despite the positive EBM impressions the proponents want to project, and it must be a sting to their egos that we do not respect their authority and we are calling out their shenanigans.

    The relative prominence of the cognitive behavioural model persists largely because of the medical vaccuum that existed since CFS was created, the inertia of the medical establishment practices and pre-existing psychobabble surrounding supposed medically-unexplained physical symptoms, the spin provided by biopsychosocialist proponents of CBT/GET (like a spinning top would topple over without the momentum of spin, I have also likened it to a gyroscope because there are layers of spin), elements of zombie science, etc.

    How proud will he be as an old man when he realizes that he spent a large proportion of his career leading a generation of people down a blind alley with a dead end? A small proportion of patients reporting minor improvements in unblinded trials, and an occasional email from a previous patient telling him his work was important, these do not counteract the negative impact that his influence has had on the rest of us, how we have been treated by the relevant gullible authorities who bought into his paradigm and had the effect of suffocating alternative research.

    Oh, and if Wessely loves the use of guilt by association in his writings on CFS and mental health issues, how's this for guilt by association?

    * I won't call him a weasel directly and I will say that I don't believe he is a weasel.
    * I will mention the similarities of his surname (Wessely vs Weaselly) and words/actions with weasel behaviour (cunning and sneakiness - dictionary.com, *tick*) and weasel wording (impression that something specific/meaningful has been said when in fact it was vague or ambiguous - Wikipedia, *tick*).
    * I will point out that people who disagree just want to avoid the stigma of the weasel stereotype and avoid the guilt/responsibility for weaselly words/actions.
    * I will even include an image of a weasel and leave the conclusions up to the audience (see below).
    * Then when someone accuses me of calling Wessely a weasel, I will deny it and point out that outdated dualistic beliefs about weasel vs non-weasel are unhelpful and need grey area.

    [​IMG]
     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    Is is just me or is that Weasel really cute?
     
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  14. biophile

    biophile Places I'd rather be.

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    How about this one? It looks a little more cunning and sneaky! ...

    [​IMG]
     

    Attached Files:

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  15. Desdinova

    Desdinova Senior Member

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    I prefer to go with the following defense that [strike]Apples[/strike] Wessely and [strike] Bananas [/strike] Weasel while they have differences and similarities they are after all both [strike]Fruits[/strike] Mammals.
     
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  16. Calathea

    Calathea Senior Member

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    Watch it, or that rather cute weasel will sue you for defamation of character - nay, of entire species! It's really not very fair on weasels to compare them to this man.

    Meanwhile, have some Carol Ann Duffy.

    Weasel Words

    Let me repeat that we Weasels mean no harm.
    You may have read that we are vicious hunters,
    but this is absolutely not the case. Pure bias
    on the part of your Natural History Book. Hear, Hear.

    We are long, slim-bodied carnivores with exceptionally
    short legs and we have never denied this.
    Furthermore, anyone here today could put a Weasel
    down his trouser-leg and nothing would happen. Weasel
    laughter.


    Which is more than can be said for the Ferrets opposite.
    You can trust a weasel, let me continue, a Weasel
    does not break the spinal cord of its victim with one bite.
    Weasel cheers. Our brown fur coats turn white in winter.

    And as for eggs, here is a whole egg. It looks like an egg.
    It is an egg. Slurp. An egg. Slurp. A whole egg. Slurp...Slurp...

    Randomly quoting the Poet Laureate aside, I think we're getting a bit ahead of ourselves in hoping that this attempt of W's to justify himself is the beginning of his downfall. While I do of course hope that he is thoroughly and definitively discredited as soon as possible, I doubt that will correspond with him admitting that he was wrong. I don't think people like that ever admit that they are, or ever have been, wrong.
     
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