The 12th Invest in ME Research Conference June, 2017, Part 2
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Memo to NICE re: CG53 revision - Margaret Williams - 31st August 2010

Discussion in 'Action Alerts and Advocacy' started by Herbiv4, Aug 31, 2010.

  1. Herbiv4

    Herbiv4

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    http://www.meactionuk.org.uk/Memo-to-NICE.htm

    Memo to NICE re: CG53 revision

    Margaret Williams

    29th August 2010

    In addition to Professor Hoopers formal complaint to the Medical Research
    Council (MRC) about the PACE Trial on ME/CFS, there is the related matter of
    the failure of the National Institute for Health and Clinical Excellence
    (NICE) to pay heed to the same concerns and its failure to consider the
    available biomedical evidence when it produced its 2007 Guideline CG53 on
    ME/CFS that was described by the ME Association and others as unfit for
    purpose.

    It may be recalled that a copy of Professor Hoopers complaint Magical
    Medicine: how to make a disease disappear
    (http://www.meactionuk.org.uk/magical-medicine.htm) was sent to Professor
    Sir Michael Rawlins, Chairman of NICE, and that he refused even to look at
    it, let alone to consider with due attention the disturbing and fully
    referenced evidence it contained. In his letter dated 2nd March 2009
    returning the unopened document to Professor Hooper he wrote: I am not
    prepared to enter into any correspondence on this matter. I am returning
    your document.

    Many people held this to be a blatant dereliction of duty by Sir Michael.

    All the professional members of the NICE Guideline Development Group (GDG)
    that produced CG53 provided signed Witness Statements for the Judicial
    Review of CG53 held in the High Court in February 2009. Those Witness
    Statements have not yet entered the public domain but it is clear that there
    were very serious issues about the selection of virtually every professional
    member of that GDG, at least one of whom is currently facing a formal
    investigation by the General Medical Council for allegedly knowingly
    misleading the High Court, which allegedly contributed to a grave
    miscarriage of justice. If found guilty, a charge of perjury automatically
    carries a custodial sentence.

    NICE was scheduled to re-visit CG53 in August 2010 and is asking the same
    GDG members to decide whether or not there should be any review at all at
    the present time (message posted by GDG lay member Richard Eddleston on
    LocalME@yahoogroups.com 26th August 2010 and message posted by the Medical
    Advisor to the ME Association: ME Association Summary and Statement on Lo
    et al paper, 25th August 2010).

    In view of the recent evidence of a strong association between ME/CFS and a
    family of MLV-related retroviruses -- a link described by Dr Harvey Alter
    (one of the authors of the Lo et al PNAS study) as a dramatic association
    with chronic fatigue syndrome (Los Angeles Times, 14th August 2010), it is
    timely to question whether the current GDG members are competent to assess
    the importance of this finding.

    This must be in doubt because, despite the fact that the 2002 Report of the
    Chief Medical Officers Working Group referred to the evidence showing that
    numerous infections are involved with the disease, those same GDG members
    also ignored the already unarguable evidence of viral involvement in ME/CFS
    and recommended that physicians should not carry out testing for viruses on
    patients with the disorder, even though none of the GDG members was a
    virologist.

    Will the now-changed policy of the UK Department of Health to impose a
    lifetime ban on blood donation by people with ME/CFS encourage members of
    the GDG to reflect on the fact that the psycho-behavioural Guideline they
    produced in 2007 may have had the effect of jeopardising the safety of the
    UK blood supply? This seems unlikely, given the extent and scientific
    calibre of the evidence that the GDG members decided (or alternatively were
    instructed) to disregard when producing CG53.

    Clara Swinson, Director of Health Protection at The Department of Health,
    has confirmed to the ME Associations Medical Advisor: As of 1st November
    2010, blood donors who report that they have had ME/CFS will be permanently
    excluded from giving blood in the UKas ME/CFS is a relapsing condition. It
    brings practice for ME/CFS into line with other relapsing conditions or
    neurological conditions of unknown origin. The change to donor selection
    criteria is being made following a recommendation by the UK Blood Services
    Standing Advisory Committee on the Care and Selection of Donors
    (correspondence between the ME Association and the interim Chief Medical
    Officer, Professor Dame Sally Davies, about UK blood donation).

    It was argued during the Judicial Review that GDG members ignored the
    biomedical evidence and placed undue reliance on the
    psycho-social/behavioural model of the disease.

    As recently noted ( http://www.meactionuk.org.uk/Update-on-MRC-complaint.htm
    ), GDG member Dr Esther Crawley is a supporter of the psycho-social model of
    ME/CFS and is about to study the effects of the Lightning Process on
    children (some as young as 8 years old) and young people who suffer from the
    disorder. The Phil Parker Lightning Process is an intervention that is being
    used for a variety of conditions, particularly ME/CFS, and is based on
    neuro-linguistic programming and life coaching (
    http://www.bristol.ac.uk/news/2010/6866.html ). It is a three-day training
    programme run by practitioners who are trained and licensed only by the Phil
    Parker organisation. Lightning Process practitioners may charge up to 880
    for three-day training sessions; the practitioners are not accountable to
    any professional body and there are no random controlled trials of its
    efficacy in adults (held by the MRC to be necessary before trials are
    carried out on children). The training sessions include the participant
    standing on paper circles with positive phrases written on them, with the
    participant required to affirm phrases such as I have a choice; I choose
    the life I love and I want energy and happiness.

    Of note is the fact that an advertisement placed by one of the Lightning
    Process practitioners who had previously identified himself with Dr
    Crawleys trial (Alastair Gibson) was recently censured by the Advertising
    Standards Authority for making the misleading and unsubstantiated claim that
    the Lightning Process was an effective treatment for ME/CFS (
    www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiratio
    n/TF_ADJ_48612.aspx ).

    The charity Action for ME (AfME) has twice published data showing negative
    experiences with the Lightning Process (InterAction magazine, March 2007 and
    AfMEs Patient Survey data published in 2008, which record a worsening of
    symptoms following the Lightning Process training programme), yet AfME
    continues to support Dr Crawleys trial: Action for ME sees no reason to
    oppose this study (published on AfMEs Facebook). As noted in Magical
    Medicine, AfMEs members might wish to consider why a charity that was
    formed to support people with ME should now work so closely with those who
    believe them to be mentally ill.

    Dr Crawleys study is co-funded by The Linbury Trust, a Sainsbury family
    trust that has supported the Wessely School since 1991; its published view
    about ME/CFS is: we can state confidently that CFS is not an inflammation
    of brain or muscle disease.Under names such as neurasthenia, effort
    syndrome and myalgic encephalomyelitis (ME), chronic fatigue has generated
    medical debate for more than a centuryThe Linbury Trust was an early player
    in this story, and has funded the great bulk of CFS research conducted in
    the UK (A Research Portfolio on Chronic Fatigue, edited by Robin Fox,
    published by The Royal Society of Medicine 1998). The Linbury Trusts
    mission statement is that patients with fatigue and psychological defects
    are predisposed to develop ME/CFS because they misattribute their symptoms
    to a physical cause, prompting them to avoid physical activity and thus
    become deconditioned, which perpetuates fatigue and psychological
    disturbance. Many people find it troubling that Dr Crawley has chosen to
    align herself with an non-medical intervention that claims to be able to
    cure a serious neuroimmune disorder within three days, sometimes even in one
    day, and that her views should again be sought over a matter of such
    importance as a revision of the very Guideline with which she was so
    intimately involved.

    Another GDG member, Dr David Vickers is, like Dr Crawley, a paediatrician;
    he is Consultant Community Paediatrician in Cambridge and since 1991 has
    been the Designated Doctor for Safeguarding Cambridge; he is Clinical Lead
    for Community Paediatrics for his Primary Care Trust and for the Children
    and Young Peoples CFS/ME Service in Cambridgeshire and Peterborough.

    He also holds the post of Registrar to the Royal College of Paediatrics and
    Child Health (RCPCH). In his Application Manifesto for the post of
    Registrar, Vickers wrote: The most important role is supporting the
    President and other Senior Officers. The RCPCH considers ME/CFS to be a
    behavioural disorder; its Report of December 2004 (Evidence-based Guidelines
    for the Management of CFS/ME in Children and Young People), in the
    production of which Dr Vickers was a participant, emphasised behavioural
    interventions: Children and young people with CFS/ME should be considered
    for graded exercise or activity programmes and contributors referred to the
    emotional dimensions of the illness and stated: The overarching aim of
    CBT is to help patients modify their behaviour for their own benefit.

    Dr Vickers views seem to sit uneasily with the views expressed in the large
    Cambridgeshire ME Support Group, who strongly supported the urgent need for
    a Judicial Review of CG53.

    Dr Vickers clinical judgment and competency in an alleged child abuse case
    were questioned in a recent High Court action. On 23rd August 2010 the BBC
    Panorama programme (Please dont take our child) revealed that his
    evidence as an expert witness was rejected by the High Court in the case of
    baby William Ward, whose parents fought and won a lengthy legal battle to
    disclose Dr Vickers name publicly. Vickers had told the police that without
    an explanation for the babys fractured leg, the cause of his injury was
    that it was inflicted. The case against the Wards relied on the view of Dr
    Vickers and others, namely, that if no obvious explanation could be found
    for an injury, then child abuse was likely. The parents were arrested and
    charged by the police and were threatened with having their child taken away
    from them by Cambridgeshire social workers and both parents were suspended
    from their jobs. However, the Judge did not accept Dr Vickers argument,
    stating: There is no cogent evidence that these parents injured their son
    (Parents win legal battle to name doctor who accused them of child abuse.
    Patrick Sawer; Telegraph, 22nd August 2010).

    There has never been any cogent evidence that ME/CFS is a somatoform
    disorder either, but that has not prevented Wessely School psychiatrists and
    those UK agencies which they advise (including the MRC, the Department for
    Work and Pensions and NICE, as well as the medical and permanent health
    insurance industry for which they work) from ruthlessly and callously
    treating it as such, nor Professor Wessely from recently stating (verbatim):
    i can say that i remain very content and indeed proud of the contribution i
    and many of my colleagues have made in improving the management of this
    condition (
    http://livingwithchronicfatiguesyndrome.wordpress.com/2010/08/29/conversing-
    with-professor-simon-wessely-part-2/ ).

    It may be worth recalling that Wessely also boasted that his team influenced
    the NICE Guideline (R&D annual reports by NHS organisations in England for
    2007: South London and Maudsley NHS Trust: Section 2A) and that he is on
    record in a BMJ podcast on 5th March 2010 as asserting: Were not going to
    go doing more and more tests to find out what was the virus because,
    frankly, even if we found it theres nothing were going to do about it
    (http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/ ). Many
    people believe that this was a reprehensible thing for Professor Wessely to
    say about people who are desperately sick and in whom multi-system
    abnormalities have been found, including high levels of inflammatory
    markers, immune system dysfunction, abnormal brain scans, abnormal muscle
    structure and function and abnormal cardiovascular function.

    It is essential that NICE should start paying attention to the biomedical
    evidence and stop supporting what many regard as cargo cult science (which
    in the case of ME/CFS seems to be the creation of policy-based evidence
    instead of evidence-based policy). Cargo cult science is a term used to
    describe work that has the semblance of being scientific but -- whilst
    following the apparent precepts of scientific investigation is lacking
    intellectual honesty; it is flawed research that fails to produce genuine
    results.

    Whilst no-one reasonably objects to the prudent monitoring of escalating NHS
    costs, NICE seems to have become the draconian arm of the Department of
    Health to the extent that its raison detre now seems to be only to save
    money, not to alleviate human suffering.

    Recently NICE confirmed that: Clinical Guidelines represent the view of
    NICE, and are arrived at after careful consideration of the evidence
    available. Healthcare professionals are expected to take it fully into
    account when exercising their clinical judgement and the Chief Medical
    Officer separately confirmed: Once NICE guidance is published, health
    professionals (and the organisations who employ them) are expected to take
    it fully into account when deciding what treatments to give people (
    http://tinyurl.com/3xe49ow ), so it is essential that NICE does not continue
    to dismiss the now-extensive biomedical evidence about ME/CFS and does not
    allow itself to be inappropriately influenced by those with vested
    commercial interests (for example, the medical and permanent health
    insurance industry which, in the case of UNUMProvident, now advises and
    influences the UK Department for Work and Pensions about ways to reduce the
    number of those eligible for sickness/disability benefit payments).

    NICE was set up in 1999 under the New Labour Government ostensibly to
    establish good practice in the NHS in England and Wales and it seems to be
    failing in its duty to people with ME/CFS by dismissing the large body of
    biomedical science that has been published about it and instead promoting
    ideologically-driven and harmful interventions that, in apparently favouring
    commercial interests, actually prevent physicians from adhering to the first
    tenet of medicine: first do no harm.

    http://www.meactionuk.org.uk
     
  2. Sunshine

    Sunshine Senior Member

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    Brilliant article from a group of excellent advocates at meactionuk.

    Thanks for posting it.

    When the people who refused to even look with their eyes at biomedical research are asked, why didn't they look...there may be a long pause.
    Especially when ME is proven an infectious transmitable disease from human to baby to human.

    What a disgrace the UK Department of Health and it's NHS is, for having a policy of treating an infectious neurological disease (ME) as a behavioural illness called 'CFS/ME''.
    Dual coding a disease with a forward slash is expressely forbidden by the World Health Organisation.

    The Brits went ahead and did it anyway, knowing no one would give a damn.
     
  3. maryb

    maryb iherb code TAK122

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    Ditto/////
     
  4. Sasha

    Sasha Fine, thank you

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    Very pleased to see this - very strong piece of advocacy. It will be interesting to see what comes back.
     
  5. Enid

    Enid Senior Member

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    Always good to read Margaret Williams - one of our best (and Prof. Hooper). Thanks for posting.
     

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