UK Judicial Review update from Charles Shepherd

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Feb 14, 2009.

  1. Bluebottle

    Bluebottle New Member

    it's not too late to email your photo to to be added to the slide show on the 'be there by photo' page at

    From the ME Association website
    http://www.meassoci uk/content/ view/791/ 161/
    by Dr Charles Shepherd

    The Judicial Review of the NICE guideline on ME/CFS took place on
    Wednesday and Thursday, 11th and 12th February, at the Royal Courts
    of Justice in London. The hearing was held in Court 76 - a large
    modernised courtroom tucked away on the third floor of this historic
    maze of legal activity.

    Unlike the preliminary hearing in June last year, there was plenty of
    room to move around along with comfortable non-squeaking seats and
    wheelchair access - although it was difficult at times for those at
    the back to hear precisely what was being said by barristers
    representing the two sides.

    Around 50 members of the public, along with occasional brief visits
    from journalists, packed Court 76 to witness the proceedings. At
    times, a 'Court Full' sign had to be posted up. Not surprisingly,
    there did not appear to be a single person with ME/CFS who had come
    up to London to support the NICE guideline.

    Outside the main entrance in The Strand, where all the TV news
    bulletin shots of the High Court are taken, a small peaceful
    demonstration against the NICE guideline took place over lunch. This
    managed to attract quite a lot of legal and public interest.

    Almost all of Wednesday was taken up with a legal presentation from
    barrister Jeremy Hyam on behalf of the two claimants who suffer from
    ME - Kevin Short from Norfolk and Douglas Fraser from London.

    In relation to the effects of the NICE guideline on practical patient
    care, two key issues were examined:

    Firstly, the procedures by which the NICE guideline development group
    (GDG) had come to the conclusion that the only treatments worth
    recommending for people with ME/CFS were two behavioural
    interventions, namely cognitive behaviour therapy (CBT) and graded
    exercise therapy (GET), and this was to the exclusion of all others.

    Secondly, the fact that a number of medical/drug and supplement
    interventions, which may be helpful in selected cases, were not
    therefore being recommended by NICE. As a result of not being
    recommended, doctors would not be willing to consider using them, and
    healthcare providers (ie PCTs) would not be willing to pay for them.
    Some people with ME/CFS would therefore be denied forms of treatment
    that could be of benefit.

    In relation to the way in which a judicial review is there to examine
    procedures rather than actual decisions, it was argued that the
    decision making process had been based on a foundation of
    insufficient evidence of clear benefit being available to recommend
    the widespread use of CBT and GET. In particular, was the way in
    which a systematic review of results from randomised controlled
    trials involving CBT and GET (ie the York Review) had failed to
    demonstrate the sort of robust consistent evidence that could stand
    alone and satisfy the requirements for this type of recommendation to
    be made in a NICE guideline. Counsel for the claimants also argued
    that insufficient weight had then been given to certain other key
    sources of evidence further down the hierarchy of evidence that were
    made available to the guideline development group - in particular the
    results of patient questionnaires and stakeholder feedback which had
    reported that in a significant proportion of people with ME/CFS these
    treatments were either ineffective or even harmful. When it came to
    the final analysis it was argued that with several members of the GDG
    being involved in clinical trails involving these two treatments, or
    expressing support for their use, there was an appearance of bias in
    the way that the GDG decided to recommend CBT and GET as the only
    forms of effective treatment. To support the appearance of bias
    reference was made to comments contained in a letter from a patient
    representative on the GDG (Tanya Harrison) who had resigned from the
    group as a result of what she believed was bias towards the
    psychosocial model. It was also argued that the appearance of bias
    towards CBT and GET was compounded by the absence of any health
    professionals on the GDG who were known to be in favour of the
    biomedical model of ME/CFS

    The final part of the first day's hearing, and almost all of Thursday
    morning, was taken up by counter arguments being presented by the
    barrister representing NICE, namely that the research evidence in
    favour of CBT and GET was sufficiently robust; that the process of
    collecting and analysing other types of evidence from clinical
    trials, stakeholders, experience of clinicians etc was thorough and
    transparent; and that no evidence of bias towards the psychosocial
    model had been shown by individual members of the GDG. Neither was
    there any bias in the way in which the members of the GDG were
    selected by nomination of the relevant Royal Colleges or professional
    bodies, and some of the accusations relating to bias, conflict of
    interest, or disclosure of interest were based on factual
    inaccuracies. In other words, the procedures that were followed by
    NICE were as robust and fair as could be achieved in the
    circumstances and that the decision to only recommend CBT and GET was
    not the result of any bias on the part of individual members of the
    GDG, or the group as a whole. Legal arguments on behalf of the
    defendants (ie NICE) went on till early afternoon on Thursday.

    Thursday afternoon produced a further legal argument involving the
    cost effectiveness of both treatments. This was given by a barrister
    acting for an 'interested party' in the case against NICE. Evidence
    was put forward on behalf of this interested party to show that the
    cost effective analysis for CBT was seriously flawed and that no
    proper cost effectiveness analysis for GET had even been undertaken.
    In other words, it was claimed that NICE was recommending two forms
    of treatment that had not yet been properly shown to be cost
    effective. Again, this position was vigorously challenged by the
    barrister representing NICE.

    A great deal of time was spent in discussing the points that are
    summarised above, along with legal technicalities. However, some of
    the other aspects of the case against the NICE guideline, which have
    surfaced in public discussion on the internet prior to the case being
    heard in Court, were not referred to or left very much out on the
    periphery (eg neurological classification of the illness).

    Legal arguments and discussion went on till almost 5pm on Thursday
    and there is still some unfinished business for the Judge, Mr Justice
    Simon, to deal with. So it looks as though the Judge's decision on
    the case will be delayed for at least a week, possibly even longer.

    The ME Association has fully supported the case for Judicial Review
    that has been made by the two claimants - see here
    A summary of press reports on the Judicial Review can be found here
    For anyone involved with insurance companies referred to during the
    hearing - Exeter Friendly Society and Liverpool Victoria - some
    interesting and useful statements regarding their positions on
    recognition and classification of ME/CFS were made during the hearing.

    Summary prepared by Dr Charles Shepherd

    14 February 2009


    (It's worth mentioning that the national M.E. charities AfMe & AfYME (who do not have members, only associate members who have no voting rights and no AGM) are the only ones who are supporting the existing NICE guidelines which only permit psychological intervention for our physical illness.

    AfME seem to have given over £62,000 in recent years to a project aimed at reclassifying ME as a mental illness, and appear not to have declared that the money was being used for such a purpose. ME has been classified as a neurological illness by the World Health Organisation since 1969 ... art-eight/

    - Bluebottle)

  2. Juloo

    Juloo Member

    Although I am in the U.S., I have been following this struggle with interest as it effects all of us. I look forward to future updates as they become available -- here's to hoping the ruling is in favor for all of us!
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I have followed it someone also. Only because I feel for my British CFS brethren. As bad as we have it here, at least we don't have the government telling doctors what the treatment is to be and not to be.

  4. Bluebottle

    Bluebottle New Member

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