Evidence-based Policy or Policy-based Evidence?

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 21, 2005.

  1. tansy

    tansy New Member

    For those not already aware - a Parliamentary Inquiry into ME and CFS has been proposed. This will only go well if all the relevant info is made available to our MPs and the Inquiry itself.

    I will be sending a copy of the article below to my MP, who supports PWME/CFS and GWS/I. Needless to say the content of replies to his questions and enquiries follow the usual misinformation and patronising spin.



    Evidence-based Policy or Policy-based Evidence?

    Professor Malcolm Hooper Eileen Marshall Margaret Williams

    20th November 2005

    In relation to the forthcoming Parliamentary Inquiry into ME/CFS to be
    chaired by Dr Ian Gibson MP (former Dean of Biology at the University of
    East Anglia and former Chairman of the House of Commons Science and
    Technology Select Committee, to whom the UK ME community owes considerable
    gratitude for his willingness to assist where others who could have done so
    have declined), a number of important points have presented themselves; for
    the avoidance of doubt, some of these points are placed on public record.

    Mindful of the misinformation that was promulgated by the Medical Research
    Council when it announced its Research Advisory Group (RAG) on "CFS/ME" (the
    MRC claimed that RAG members were "fresh" and "independent" to the issue of
    ME/CFS but this turned out to be untrue, in that one of the RAG members was
    a Member of the Linbury Advisory Panel on CFS --- the Linbury Trust having
    since 1991 funded a considerable number of Wessely School projects -- and at
    least two of the RAG members had co-authored papers on CFS with Professors
    Simon Wessely and Michael Sharpe), the UK ME community has understandably
    expressed legitimate concerns about the pressing need for absolute
    transparency about Inquiry members' backgrounds and affiliations. Dr Gibson
    has already placed on record his wish for balance in the selection of
    Inquiry members but it is hoped that Dr Gibson (who, as Chairman of the
    Inquiry, will select its members) will understand these concerns. It is also
    hoped that he will accept that an Inquiry panel containing Members of
    Parliament who although nominally non-partisan may, for whatever reason, be
    naïve about the underlying issues could do lasting damage to an already
    damaged community of very sick people. A list of Inquiry members is
    therefore keenly awaited.

    A second point of concern is that past experience has demonstrated that
    documents that have been submitted to official bodies such as the Chief
    Medical Officer's "independent" Working Group and to the MRC RAG that are
    deemed not to accord with current "policy" have simply disappeared without
    trace; this being so, the ME community would be re-assured to have access to
    a list of documents that have been or will be submitted to the Inquiry. As
    Dr Gibson has confirmed that the All Party Parliamentary Group on ME
    (APPGME) is to have conduct of the Inquiry secretariat, and as an official
    complaint about the conduct of the APPGME in relation to its apparent
    pro-psychiatric bias has been submitted, this is a matter of importance.

    Dr Gibson having confirmed that his Inquiry will wish to take evidence from
    as many people as possible, especially those with ME/CFS who have
    experienced problems with the "establishment", a third point relates to the
    selection of such witnesses. Concern has already been expressed that
    witnesses who might put themselves forward may not in fact suffer from
    authentic ME and may thus present an inaccurate and misleading picture of
    what ME really is. Particularly significant is the need for potential
    witnesses not to be vetted or approved by those unfamiliar with authentic
    ME. There is also concern that adequate provision is made for video-link
    evidence from those who are simply too sick to attend in person but whose
    evidence ought to be the lynch-pin of the Inquiry.

    Another point of concern relates to the way in which the necessary evidence
    will be collated and presented to Inquiry members in an assimilable manner;
    given the sheer amount of such material, this would seem to be a major
    logistical problem.

    For example, in the American Family Physician, a peer-reviewed journal of
    the American Academy of Family Physicians (one of the largest groups of
    physicians in the US), the issue of 1st November 2005 (volume 72, no. 9)
    features CFS in the section "Clinical Evidence Concise", this being a
    section that purports to provide evidence-based continuing medical education
    (CME) for the credits that are required to be obtained by all physicians to
    demonstrate their up-to-date medical knowledge; the articles in "Clinical
    Evidence Concise" purport to summarise current knowledge about a disorder
    and are used in "best practice" guidelines. In this particular issue, the
    topic is CFS and the authors are Steven Reid, Trudie Chalder, Anthony
    Cleare, Matthew Hotopf and Simon Wessely. What is so disturbing is that this
    is a re-run of the same authors' paper in the BMJ of January 2000, which was
    a shortened version of their original article in the second issue (December
    1999) of "Clinical Evidence", a BMJ Publishing Group Review. For these
    authors to publish it once again six years later demonstrates their total
    refusal to pay any heed to the wealth of biomedical evidence about ME/CFS
    that has been published in the intervening six years and would seem to be an
    abuse of the scientific process as well as an abuse of those with ME/CFS. As
    Jill McLaughlin noted on [log in to unmask] : "This is what is being
    distributed to physicians all over the country who legitimately use
    evidence-based medicine to treat (or in this case, shall we say, mistreat)
    patients. We cannot always rail at doctors when this is the information that
    they are receiving in mainstream, peer-reviewed medical journals".

    We have printed the 20 pages of Rapid Responses to the article in the BMJ
    from early 2000 and intend to submit them to the Parliamentary Inquiry
    because they encapsulate not only the abhorrence and disbelief that the
    paper engendered within the medical community at the time but also they
    demolish the psychiatrists' false beliefs about CFS, which is evidence of
    which we believe Inquiry members need to be aware.

    Without doubt, those false beliefs are now known to be carefully-constructed
    "policy-based evidence", as can be seen from the 32 page Report from a
    Working Group of the Medical Research Council's own Neurosciences and Mental
    Health Board (NMHB) Strategy and Portfolio Overview Group (SPOG) of January
    2005. The aim of that Report was to consider the balance of the current MRC
    research portfolio and it confirms what the UK ME community has long
    recognised - that ever since the advent of Simon Wessely, the MRC has
    considered "CFS/ME" as a mental disorder and will continue to do so: at
    paragraph 6.2 the Report is unequivocal: "Mental health research in this
    instance covers CFS/ME".

    Given what is on public record about ME/CFS (see "Time for a Reality Check
    at the UK Department of Health?" by Margaret Williams, Co-Cure ACT: 3rd
    April 2004, which chronologically documents the acceptance of ME/CFS as an
    organic disorder from official bodies including the UK Department of Health
    from 1987) and given the well-publicised written confirmation of 11th
    February 2004 from the Health Minister Lord Warner that the correct (and
    only) ICD classification for ME/CFS is neurological, this significant
    inconsistency is a core issue which the Inquiry would surely wish to address
    most scrupulously.

    Other points of note in the SPOG Report include the following:

    i. mental ill-health represents a significant burden on healthcare systems

    ii. improving the well-being of people with mental disorders is a major
    priority of the UK Government

    iii. the MRC research agenda should be optimally aligned with the injection
    of Government funding into this area

    iv. the Report's Terms of Reference were to advise on research opportunities
    and priorities for the future

    v. the MRC affirms that by 2020, global childhood neuropsychiatric disorders
    will have risen by more than 50% from current levels and that
    neuropsychiatric disorders in adults are likely to account for 15% of the
    total disability-adjusted life-years lost due to all diseases and injuries
    (could this be because of the deliberate construction of "mental" illnesses
    by those with vested interests -see "An Inquiry by the UK House of Commons
    Health Select Committee into the influence of the Pharmaceutical Industry"
    by Margaret Williams, Co-Cure ACT: 31st October 2004)

    vi. mental health represents a vast potential market for pharmaceutical

    vii. under "Mapping the UK research portfolio in mental health", the Report
    states: "The analysis will capture all peer-reviewed grants that are live at
    a given date, which will be classified in terms of a list of mental health
    conditions based upon ICD-10 classifications" (could this explain the
    determination of Wessely School psychiatrists formally to re-classify ME/CFS
    as a "mental" disorder in the ICD?)

    viii. according to the "opinion-leaders" consulted by the Report's authors,
    links with industry funding in the area of mental health are "weak" compared
    with other areas of medicine and "Funding for mental health research in the
    UK is low relative to the burden of disease" (the figure of £11.1 million
    recently awarded solely to subscribers to the Wessely School's beliefs about
    "CFS/ME" compared with the nil amount awarded to biomedical research springs
    to mind).

    That the MRC specifically and deliberately includes "CFS/ME" under "mental
    health" research is at diametric variance with the Health Minister's written
    confirmation given one year prior to the publication of this MRC SPOG Report
    and this must be an issue that the Inquiry members do not evade.

    One would have thought that such written clarification from the Health
    Minister was sacrosanct, especially given the previous documentary evidence
    that the UK Department of Health has officially accepted ME as a physical,
    not mental, disorder since 1987 (re-affirmed by the Department of Health in
    1992), but on 20th April 2004 the same Health Minister (Lord Warner) stated
    in a written Parliamentary answer: "The Department of Health did not say
    that myalgic encephalomyelitis / chronic fatigue syndrome is a neurological
    disease" (see Hansard HL2302). Given the extent and quality of the
    international evidence which demonstrates the neuroendocrine-immuno-vascular
    pathology that underlies the organic nature of ME/CFS, such a volte-face is
    seen to be not only inexplicable but also to be lacking in credibility and
    therefore something to which Inquiry members will be expected to pay
    particular attention.

    Such deliberate "policy-based evidence-making" by the MRC and the Wessely
    School psychiatrists who dominate its thinking about ME is a core issue that
    Dr Gibson's Parliamentary Inquiry must not fail to address, especially in
    the light of a recent article by a professor of anatomy and a doctoral
    student that is currently receiving wide attention both in the general and
    medical news media including Nature, WebMD, Medscape, UPI, New Scientist
    (12th November 2005) and the Wall Street Journal Science Journal (18th
    November 2005, page B1).

    Commenting on this exposure of psychiatric fallacy, Vera Hassner Sharav
    aptly sums up the situation (see Co-Cure EDU: 19th November 2005): "One
    after another of psychiatry's theoretical constructs and therapeutic
    armamentarium have been knocked down and relegated to the dust-heap of
    pseudo-scientific history. None of psychiatry's claims have withstood the
    test of scientific scrutiny. The very core upon which psychiatry's practice
    guidelines are based has been shown to be nothing but unsubstantiated
    speculation. When confronted with evidence refuting this mantra of
    biological psychiatry, Wayne Goodman, chair of the FDA psychopharmacologic
    advisory committee admitted in The New Scientist that the false premise is
    nothing but a 'useful metaphor', yet not only company advertisements but
    leading psychiatrists have deluded the public for decades with such false
    claims. Unsubstantiated pronouncements by psychiatry's leadership gave the
    mental health industry pseudo-scientific arguments with which to equate
    mental illness to physical illnesses. This patently false comparison gave
    ammunition with which to lobby for drug budget parity. The 'useful metaphor'
    was used to deceive patients and the public and to divert healthcare funds
    from essential medicines. Dr Goodman admits that he has never revealed the
    truth to his patients - 'I can't get myself to say that'. The fact is that
    the psychiatric establishment has been concealing the truth about the lack
    of scientific evidence behind all of its theoretical constructs and

    This long-standing deception by psychiatrists, which seems to be driven only
    by their desire to secure ever-more massive funding for their own
    speciality, lies at the very heart of the politically constructed tragedy
    that is ME/CFS and is unmistakably obvious from the MRC SPOG Report.

    Given the excoriating criticism levelled at the MRC by Dr Gibson's Science
    and Technology Select Committee Report in March 2003 (see "The Work of The
    Medical Research Council: Third Report of Session 2002-03: HC 132), it is to
    be hoped that his forthcoming Inquiry into ME/CFS will be duly mindful of
    that criticism and will act accordingly.
  2. elsa

    elsa New Member

    I read with great interest the updates you continue to post concerning the hijacking of CFS/ME by the Wessley School. I am so looking forward to the containment of these individuals.

    I have been reading lately the transcripts of a meeting between the Natioal Institute of Health and the FDA concerning fibromyalgia and chronic fatigue. The last I read over it was this past friday. I could not help but think of the UK's situation and how the power and wealth hungry psychiatrists would shoot this document down.

    My guess is that it would simply disappear ... regardless of the size and scope of it.

    I'll be thinking positive thoughts on this. Thanks for keeping me up to date.

    Take care,


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