Oh Lord please don't let me be misunderstood

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jan 19, 2012.

  1. simpsons

    simpsons Member

    posted with permission and also permission to repost :


    Oh Lord, Please Don’t 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 treat—it 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

    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 Wessely’s 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 occur…at 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 responses…but 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 didn’t 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 become…over-sensitised to physical
    sensations”; “Blaming symptoms on a viral infection conveys certain
    advantages, irrespective of its validity…It 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 Wessely’s 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 CFS…But 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 haven’t succeeded and won’t”.

    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” (

    Readers of Professor Wessely’s 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”.

    [This Message was Edited on 01/19/2012]
  2. spacee

    spacee Member

    Oh how the 'great man' has tumbled off the pedestal of his own making
    and can only try to regather some of the greatness he thought he once was.

    He has to be a 'fruitcake' as we say in the US (crazy as a loon). All of
    his "logic' made no sense and he will end his days watching research
    find him a fool.

    My opinion anyway.
  3. simpsons

    simpsons Member

    i believe you are correct ;)

    oh how the mighty will fall.

    gws he was proved wrong about that, camelford water scandal was another that he was wrong about and now ME research will and is already showing him to be a fool too

    we must keep the pressure on for research, lobbying political figures and writing to the press encouraging them to do more articles based on science data

    his main defense is to cause confusion and divide opinion.

    divide and conquer

    best to let him fade away though, he'd rather go out in a blaze of glory