Unanswered Questions, ME/CFS (UK)

Discussion in 'Fibromyalgia Main Forum' started by tansy, Sep 13, 2005.

  1. tansy

    tansy New Member

    Unanswered Questions: do inconsistencies matter in medicine?

    Margaret Williams 10th September 2005

    Following recent posts about the intention of members of the Wessely School
    / One-Health company to persuade Government agencies to implement a national
    programme of cognitive behavioural therapy and graded exercise regimes for
    those with alleged “behavioural” disorders in which they include “CFS/ME”
    (see Co-Cure ACT: “Proof Positive?”: 2nd September 2005 and “More Proof
    Positive?”: 4th September 2005), there are numerous inconsistencies that
    seem to remain unaddressed by One-Health company lobbyists. They include (i)
    the irrationality of drawing conclusions across differing patient
    populations (for example, lumping together those with primary psychiatric
    disorder and those with primary organic disorder and then claiming that this
    amalgamation represents one single “behavioural” disorder); (ii) the
    absurdity of relying on assumptions as the basis for a compulsory management
    regime (for example, that ME/CFS patients obtain secondary gain); (iii) the
    divergent assertions about the efficacy of cognitive behavioural therapy;
    (iv) the inherent danger of applying a “one-size fits all” management policy
    to those with “CFS/ME” and (v) the opposing evidence of these psychiatrists’
    intention to claim “CFS/ME” as a psychiatric disorder.

    The irrationality of drawing conclusions across differing patient
    populations

    Although Wessely began attacking the validity of ME in 1987 (see, for
    example, “Mass Hysteria: Two Syndromes?” Wessely S. Psychological Medicine
    1987:17:109-120), there is substantial evidence that since the creation of
    “CFS” in 1988 (“Chronic Fatigue Syndrome: A Working Case Definition”.
    Holmes et al. Ann Int Med 1988:108:387-389), Wessely and his colleagues have
    assiduously attempted to subsume ME within the heterogeneous label “CFS”,
    asserting that it is a functional somatic disorder (ie. a primary
    psychiatric disorder) whose sufferers must be made to alter their beliefs
    and behaviour (see http://www.meactionuk.org.uk) but it needs to be asked on
    what evidence One-Health company members rely that enables them to subsume
    the discrete entity ME into their own definition of “CFS/ME” when, by virtue
    of the criteria they used, most of their studies could not have included
    those with authentic ME?

    Because of the irrationality of drawing conclusions across differing
    patients populations, in the first (1996) volume of “Denigration by Design?”
    (copies available at cost price from Mrs DM Jones, telephone 0208-554-3832)
    34 questions were listed which it was believed Wessely should be required to
    answer; almost a decade later, most of those questions remain unanswered but
    are equally relevant and include the following:

    1. On what grounds do Wessely et al justify their selection of patients for
    their studies when the criteria they use exclude the criteria necessary for
    a diagnosis of ME (which they now refer to as “CFS/ME”), for example, the
    Ramsay diagnostic triad? (see: Myalgic Encephalomyelitis: A Baffling
    Syndrome with a Tragic Aftermath. A. Melvin Ramsay. Published by the UK ME
    Association, November 1981)

    2. Why do Wessely et al ignore the world-wide literature on the severity and
    chronicity of ME?

    3. What are their views on the fact that patients with ME are not permitted
    to donate blood, whereas patients with a psychiatric diagnosis are not
    excluded?

    4. In how many of their patients have they requested tests of vestibular
    function, of pancreatic exocrine function, of liver function, of cardiac
    function and of levels of oxygenation, perfusion and pulsatilities; in how
    many patients have they asked for measurement of patients’ CD4:CD8 ratio; of
    IgG3 levels; of circulating immune complexes and of NK cells; what
    percentage of their patients have abnormal vascular changes and what
    percentage of their patients have undergone nuclear medicine imaging
    studies?

    5. Where is their evidence of secondary gain in ME patients who they claim
    have “adopted the sick role”?

    The answers to these questions are important: without answers, why are
    people trained in other professional disciplines to make factual
    observations and to collect and analyse data taking Wessely School
    psychiatrists’ studies seriously?

    The absurdity of relying on assumptions as the basis for a compulsory
    management regime
    On the issue of secondary gain, in 1996 the question was asked why Wessely
    never addresses the losses sustained by those with ME/CFS: “Why does
    (Wessely) assume that there are invariably benefits in the sick role? If he
    wishes to claim there are benefits (which he does), then he needs to
    ascertain in each individual case that patients are benefiting from adopting
    the sick role for what they can get out of it: this needs to be proved
    before it can be stated as fact. No expensive tests would be required to
    ascertain whether or not patients do benefit in any way, and this should not
    be stated as a universal fact merely on Wessely’s assertion that it is so”.

    What “secondary gain” can possibly compensate for the loss of health,
    employment, financial security, social life and – far too often – loss of
    home, partner, family and friends? If “adopting the sick role” brings
    people with ME/CFS to the point of such despair that they consider or commit
    suicide, how can it be thought to be “rewarding”?

    However, as was shown in “Proof Positive?”, Wessely and his co-lobbyists
    still seem to hold the same beliefs because Professor Michael Von Korff
    said: “If we start with the assumption that (these patients) are motivated
    largely by secondary gain ….”. To depend on such an assumption defies
    logic, so the question therefore needs to be repeated: where are the
    published studies which demonstrate that such patients obtain secondary
    gain? As Von Korff made plain, the psychiatrists’ view is an assumption --
    with much being built on it -- but assumptions are hardly “evidence-based
    medicine” upon which Wessely et al claim to place such store.

    Divergent assertions about the efficacy of CBT

    The documented inconsistencies about the efficacy of cognitive behavioural
    therapy (CBT) seem to present another paradox: in his “Reply to our critics”
    that followed the publication of the paper “Randomised controlled trial of
    patient education to encourage graded exercise in chronic fatigue syndrome”
    by Pauline Powell, Richard Bentall, Fred Nye and Richard Edwards (BMJ
    2001:322:387) in which the authors – all of whom could be regarded as being
    supportive of “Wessely School” beliefs about “CFS/ME” -- cite Sharpe’s 1996
    BMJ paper, Richard Bentall asserted: “There is now a consistent and
    impressive body of evidence that shows that psychological interventions that
    facilitate a graded return to normal activity are effective in many cases of
    CFS”. (eBMJ: 27th February 2001).

    What seems to have been overlooked is that although Sharpe contributed much
    of the cited (allegedly supportive) literature, Sharpe himself substantially
    undermined it by stating on 3rd November 2000: “There is a tendency for the
    difference between those receiving CBT and those receiving the comparison
    treatment to diminish with time due to a tendency to relapse in the former”
    (see: http://www.cfs.inform.dk). Curiously, in the same document Sharpe
    referred to a five-year follow-up study of CBT as showing “some persistent
    benefit”.

    It is important to be aware that the authors of the study to which Sharpe
    referred conceded that CBT “has been shown to improve functional impairment
    for up to 8 months after treatment” and state about the efficacy of CBT that
    “observed gains may be transient”. The conclusion was: “It seems that once
    therapist contact ended at six months after treatment, some patients may
    have become vulnerable to relapse”, so (unsurprisingly) the authors suggest
    that “It may be useful to extend the duration of treatment to include more
    attention to core beliefs that could leave patients vulnerable to relapse”.
    Crucially, the findings were that after five years, “almost one-half (of
    participants) still fulfilled the criteria for chronic fatigue syndrome”
    (“Long-Term Outcome of Cognitive Behaviour Therapy Versus Relaxation Therapy
    for Chronic Fatigue Syndrome: A 5-Year Follow-Up Study”. Alicia Deale,
    Trudie Chalder, Simon Wessely et al. Am J Psychiatry 2001:158:2038-2042).

    Of more relevance is by what reasoning a management regime that delivered
    “some” benefit lasting for only six months can be deemed to be
    cost-effective to the extent that it is being promoted as the national
    management regime of choice for the much-abused sufferers of ME/CFS. Is
    this the calibre of “evidence” that One-Health members will rely on to
    convince the Establishment that they are right?
    It is not only Sharpe but also Wessely himself who has conceded the limited
    efficacy of CBT: in his editorial “Chronic Fatigue Syndrome – Trials and
    Tribulations” (JAMA: 19th September 2001:286:11) Wessely stated that CBT and
    graded exercise are only “modestly effective” and that neither is “remotely
    curative”; one wonders why he confided this insight to a leading American
    journal, while he continues to withhold it from the readership of the BMJ
    and from Government policy-makers.

    The inherent danger of applying a “one size fits all” policy of management
    in ME/CFS

    Of note is that the same Richard Bentall referred to above (professor of
    experimental clinical psychology at the University of Manchester) is on
    record as stating: “The idea that there is a clear division between ‘mad’
    and ‘sane’ is resulting in the mass-application of treatments which, while
    benefiting some, are very harmful to others”; of significance in relation to
    ME/CFS is that he also said that identifying and addressing the problems the
    sufferer, rather than the psychiatrist, perceives is far more scientific,
    humane and effective than a blanket diagnosis (Madness of labelling mental
    illness. Michelle Roberts. BBC News health reporter; BBC 2nd September 2005,
    23:50 GMT).

    Are Bentall’s two quotations consistent in relation to ME/CFS, especially as
    those with ME/CFS are indeed the subjects of “blanket diagnosis” (ie.
    somatisation disorder) by One-Health company members and are also subject to
    the mass application of CBT and graded exercise and it is beyond dispute
    that the problems identified by patients with ME/CFS are not only not
    addressed but are comprehensively ignored by One-Health company
    psychiatrists?

    Yet again, it needs to be asked why there is special pleading in relation to
    ME/CFS?

    The opposing statements from One-Health company members concerning the
    intention of psychiatry to claim “CFS/ME” as a psychiatric disorder

    It seems unequivocal from what was disclosed in “Proof Positive?” that the
    psychiatric lobby believes “CFS/ME” to be a somatisation disorder. It is
    widely understood that this psychiatric lobby is intent on the creation of a
    new category for “somatisation” disorders in the next edition of
    International Classification of Diseases (ICD-11) into which category
    “CFS/ME” will be placed, as proposed by Professor Mike Sharpe (see “Sinister
    Science”: Co-Cure:ACT 6th June 2004). Sharpe believes that this new category
    should accommodate “behavioural” disturbances such as CFS/ME: “The ambitious
    programme to prepare for the forthcoming DSM-V and ICD-11 offers an
    opportunity to reconsider somatoform disorders” (see: British Journal of
    Psychiatry 2004:184:465-467).

    This seems inconsistent with the written assurances from Wessely, who in
    November 2001 wrote to a correspondent: “I am aware that some people see
    (the inclusion of ME as a mental disorder in the WHO Guide to Mental Health
    in Primary Care) as a plot for WHO to surreptitiously switch CFS/ME from
    neurological to psychiatric. I can tell you that is nonsense. I am afraid
    there is no conspiracy to claim CFS/ME for psychiatry”. In a second letter,
    Wessely re-iterated his earlier assurances: “I know one or two people detect
    a plot by psychiatry to claim CFS/ME for itself --- I promise you that the
    idea is preposterous. If the real issue is that this is all a sinister plot
    to get CFS transferred into the clutches of psychiatry --- forget it”.

    How do such assurances match the facts?

    As Wessely et al seem intent on enticing the Chancellor of the Exchequer and
    the policy-makers with a national programme of CBT for those with “CFS/ME”
    that is promised to save money (presumably by removing patients from State
    benefits, after which what subsequently happens to them is of little
    interest to this cabal), should someone not tell them that the psychiatrists’
    own existing evidence is already clear that such programmes do not deliver
    lasting improvement? The policy-makers are unlikely to save money in the
    long-term by allowing themselves to be indoctrinated by One-Health company
    members, especially as any such claim seems to be based on nothing more than
    unsustainable assumption and assertion.
    It would surely be more cost effective to fund appropriate research into
    causation, ie. biomedical research that stands a realistic chance of
    delivering actual treatment that leads to what sufferers regard as the
    ultimate goal – a cure.