2/11: Judicial Review of UK CFS/ME Treatment Guidelines

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Feb 3, 2009.

  1. mezombie

    mezombie Member

    NOTE: NICE is the UK's equivalent of the US CDC. The NICE Guidelines insist that Cognitive Behavioral Therapy (CBT) and Graded Exercise Treatment (GET) are the only appropriate treatments for ME and CFS. The CDC's CFS website has highlighted these guidelines in its treatment section.

    What happens during this judicial review will have world-wide ramifications. Therefore, as Margaret Williams writes at the end of her article, "National and local ME charities in the UK and abroad should alert the media to the global significance of this court case, in the long- running medical controversy about ME." Any individuals reading this may want to do the same.

    For more information on how to support this review, check out http://www.nicemecourt.co.uk/


    Preview of the NICE Judicial Review.

    Margaret Williams & Horace Reid.

    3rd February 2009.

    May be reposted.

    The Judicial Review of the NICE guidelines on CFS/ME
    will be held on Wednesday & Thursday 11th & 12 of
    February 2009. The case is being brought by two
    adult patients living in the UK.

    The constraints of this type of legal challenge
    (Judicial Review) have already been indicated by the
    judge who initially granted leave to proceed. Mr
    Justice Cranston made it clear in June 2008 that a
    court is not an appropriate forum for medical debate.
    Arguments will therefore centre on technical issues,
    such as whether NICE followed its own prescribed

    Much to the disappointment of many patients, there
    will be no debate on the aetiology, definition, or
    biomedical status of ME. However in an intense
    two-day hearing, other crucial issues will be

    Guideline Development Group Bias.

    It has been the practice of the psychiatric lobby to
    attempt to pack important CFS/ME committees with
    their own supporters, to achieve their desired
    outcomes of CBT & GET. They did this successfully in
    1996 with the Royal Colleges report, repeating the
    trick with the CMOs committee in 2002. With NICE
    the liaison psychiatrists have been more subtle.
    Instead of personally serving on the Guideline
    Development Group (GDG), it seems that they have
    managed to stack the group with sympathizers,
    whilst biomedical ME specialists critical of their
    approach were excluded. A Freedom of Information
    request has revealed that Professor Anthony Pinching
    among others was deeply involved in the GDG
    selection process.

    The many competing interests of the individuals on
    the GDG (declared and undeclared) may now be
    subjected to the scrutiny of a High Court judge.

    Failure to Declare Conflicting Interests.

    Take for example the case of Dr. Fred Nye. Incredible
    as it may seem, as a member of the GDG he was
    allowed to adjudicate on the quality and relevance of
    his own research. His RCT, co-published with Powell
    and Bentall, constituted 25% of the positive
    evidence base supporting the NICE recommendation
    on GET. It is difficult to understand how the
    chairman and fellow members of the GDG could
    regard him as a neutral and objective participant
    when the value of GET was being debated.

    At some stage Dr. William Hamilton, another GDG
    member, did declare his connection with the
    Liverpool Victoria and Exeter Friendly insurers. But
    NICE failed to appreciate that his appointment gave
    him an opportunity potentially to import an
    inappropriate commercial agenda into the clinical
    area. Many health insurers have subjected ME
    patients to sharp practice; their notoriety came to
    the attention of Dr. Ian Gibsons committee in 2006.
    His Parliamentarians condemned the blatant conflicts
    of those individual researchers who mingled their
    commercial and clinical interests. In its appointment
    of Dr. Hamilton, NICE failed to heed these warning

    A number of other prominent GDG members failed to
    declare their close connection with interested parties
    such as Professors Simon Wessely, Peter White, and
    Trudie Chalder. Their names and multiple omissions
    may soon be disclosed.

    Scrutiny of the CBT/GET Evidence Base.

    The Wessely School continually boast that their
    favoured treatments CBT & GET are evidence based;
    but their claims lack objective validation. All too
    often they peer review their own work. In the 2006
    NHS Plus exercise, for instance, on Occupational
    Health guidance for CFS/ME, Professors Chalder and
    White sat in judgment on their own research,
    without declaring a competing interest. Their fellow
    NHS Plus participant, Professor Michael Sharpe,
    apparently noticed nothing amiss.

    It is clear that the court cannot entertain clinical
    arguments on the merits of NICE-endorsed
    treatments for any disorder. However the Judge may
    be asked to consider whether NHS recommendations
    for 240,000 UK ME patients can justifiably be based
    on the miniscule amount of evidence supporting CBT
    & GET. The much-vaunted Wessely School evidence
    base will be subjected to impartial public scrutiny.

    As AYME has hinted in its website post of 19/1/09,
    the case has the active support of many leading
    biomedical researchers, at home and abroad. Dr.
    Bruce Carruthers, lead author of the Canadian
    national ME guidelines, plans to be present in court
    throughout the two day hearing.

    AYME & NICE.

    AYME contemplate two outcomes: the 2007 NICE
    CFS/ME guideline could be struck down altogether; or
    it might survive, and be subject to routine revision in
    due course.

    Routine revision, already envisaged, would simply
    give NICE an opportunity to repeat past errors. The
    psychiatrists would likely get their way once more,
    and the legitimate concerns of ME patients would be
    ignored as usual.

    NICE Must Begin Again.

    Striking down Clinical Guideline 53 is the more
    desirable option. The present guideline would cease
    to have effect, and NICE would have to begin again
    from scratch. Those who allegedly manipulated the
    composition of the CFS/ME GDG would be exposed
    and discredited. No- one would dare to resort to such
    tactics again. If it is proved that the GDG was
    infiltrated by the commercial interests of the medical
    insurance industry, and became a pawn of a clinical
    special interest group, then NICE will be much more
    circumspect next time. And the CBT/ GET research
    bubble will be definitively burst.

    Patient & Media Support Needed.

    It is important that ME patients and their families
    come in person to London next week. The presence
    of large numbers inside the building, and outside
    along with TV cameras, will impress upon the court
    the importance of this issue to a quarter-of-a-million
    UK ME patients. (Observer spaces inside the
    designated courtroom will be extremely limited).

    National and local ME charities in the UK and abroad
    should alert the media to the global significance of
    this court case, in the long- running medical
    controversy about ME.

    [This Message was Edited on 02/06/2009]
  2. desertlass

    desertlass New Member


    Thanks, as always, for keeping us all alerted to what is going on with the Nastily Ingrown Churlish Eejits.
  3. quilp

    quilp New Member

    Will any of the big hitters be there to defend our corner ? The psychiatric lobby in this country ( UK ) are very powerful. We have no chance of succeeding unless we have the experts on our side !

    Kind regards Mark
  4. mezombie

    mezombie Member

    Hi Quilp,

    Well, it looks like Bruce Carruthers of Canada, lead author of the Canadian ME/CFS Guidelines, will be testifying. Hopefully there will be others like him.

    BTW, here's a site specific to this review, with information on how to get involved:


    Take care,
  5. quilp

    quilp New Member

    Thanks mezombie

    I can't believe this day has finally arrived. Imagine the misery that would have been spared had this review taken place decades ago. Who'd want to be a member of the human race.

    Kind regards Mark
  6. Bluebottle

    Bluebottle New Member

    The judge is now taking three days to consider written submissions, which takes it until Tuesday, then we have to await his verdict. Fingers crossed.

    I so wish there could be an end to the evil and injustice we are facing in the UK, the double whammy of being very physically ill and of being treated like malingering scum by the medical profession because a group of powerful psychiatrists have declared we are imagining our illness.

    However, the NICE defendants could afford a really expensive high power legal team & the claimants could not. It really is a David and Goliath situation.