The MRC's new multidisciplinary panel

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 28, 2008.

  1. tansy

    tansy New Member

    on "CFS/ME" and a request for information
    under FOI

    (MRC - Medical Research Council (UK))

    According to CFS Research Foundation Newsletter
    #12, it was anticipated that the new MRC "CFS/ME
    panel of experts" or "multi-disciplinary panel" would
    be meeting in April or May "...with crossboard
    membership along with outside groups which, it is
    hoped, will lead to a workshop."

    It might reasonably be expected, then, that the
    members of this panel have already been appointed.
    But other than naming the panel's chair as Professor
    Stephen Holgate*, who already holds office on a
    number of other MRC committees, the MRC has yet
    to identify any other members of this panel.

    In response to a written question from Francis Maud
    MP, Ian Pearson MP, Minister of State for Science
    and Innovation, wrote: "The [MRC] panel will come
    from varied fields including neuroscience,
    immunology, toxicology and imaging, and will
    involve interested parties and focus on the subtypes
    and causes of ME/CFS".

    With the line-up of the Royal Society of Medicine's
    "CFS" conference still fresh in our minds and mindful
    of the MRC's own previous track record, the
    construct of "multi-disciplinary" in the context of ME
    and "CFS/ME" sends a cold shiver down my spine.

    One only has to review the list of participants of the
    joint AfME/MRC Research Summit which took place
    in November 2006, to get a feel for the MRC's past
    interpretation of "multi-disciplinary".

    For the list of participants of the joint AfME/MRC
    Research Summit see:

    "The AfME Research Summit and the list they did not
    want us to see"

    I'm sure I'm not alone in feeling more than a little
    apprehensive as we wait to hear who has been
    appointed to this new MRC "CFS/ME panel of experts"
    or "multi-disciplinary panel".

    We have been told that the panel will also seek to
    involve what have been referred to as "interested
    parties" or "outside groups".

    But it has yet to be established how the MRC (or this
    panel) will define an "interested party"; how and by
    whom it will be determined which "interested
    parties" will be approached. It is not known on what
    basis "interested parties" will participate in the
    business of this panel and whether any "interested
    parties" have already been approached by the MRC
    for their potential involvement or have made
    representations to the MRC for inclusion in this
    project or through what means they might do so.

    Is a limited and select group of "interested parties",
    for example, to be offered seats on a Steering or
    Working Group alongside multi-disciplinary "experts"
    or used as a reference or focus group? Does
    "interested parties" mean patient representation
    organisations or existing research organisations such
    as ME Research UK or the CFS Research Foundation,
    on whose research committee Professor Holgate
    already sits?

    It's not clear what involvement Action for ME might
    already have or might be invited to have in the
    establishment of this new panel and in the drawing
    up of its Terms of Reference - a "multi-disciplinary
    panel" was one of the suggestions to come out of
    the joint AfME/MRC Research Summit.

    On 25 April 2008, I submitted a request to the MRC
    under FOI Act for information relating to the setting
    up of a multi-disciplinary panel on "CFS/ME".

    Today, I have received the following response from
    Ms Wendy Raymond of the Medical Research

    Note that the specific fields of "psychology and
    psychiatry" were omitted from the list of fields cited
    by Ian Pearson, MP in his written response to
    Francis Maud but "psychology and psychiatry" are
    included by Ms Raymond in her response on behalf
    of the MRC, below:


    From: Wendy Raymond, Medical Research Council

    [log in to unmask]

    Date: 25 April 2008

    Thank you for your enquiry of 25 April 2008 asking a
    number of questions relating to a new
    multi-disciplinary panel on CFS/ME.

    As you note, Professor Holgate discussed that the
    new panel was being established at a recent
    meeting in Southampton. You may also be aware
    that Professor Holgate is currently the Chairman of
    the MRC's Population and Systems Medicine Board
    and is a member of MRC's Strategy Board. The MRC
    is currently working to establish a panel of experts
    from different disciplines to look more closely at
    current research in CFS/ME. The panel will focus on
    the subtypes and causes of CFS/ME and will aim to
    identify and encourage new research towards
    increasing understanding of the basis of CFS/ME.

    You have asked a number of questions about the
    proposed panel:

    1] A list of the names of all members of the ME/CFS
    multi-disciplinary panel set up by the Medical
    Research Council.

    The panel has not yet established. As noted at the
    meeting in Southampton, Professor Stephen Holgate
    will chair the Panel. Once finalised, the membership
    of the panel will be published on the MRC website.

    2] Through what process were the panel members

    The members of the panel will be appointed by
    invitation, and membership will include leading
    experts in a number of fields including neuroscience,
    immunology, toxicology, imaging, psychology and
    psychiatry and will involve other interested parties.

    3] To whom will this panel directly report?

    The panel will report to the MRC's Strategy Board.
    The Strategy Board (chaired by the Chief Executive)
    develops the overall strategic scientific plans for the
    MRC and ensures that the organisation is responsive
    to the current and future scientific landscape.
    Further information on the role of the Strategy Board
    can be found on our website at

    4] The panel's Terms of Reference.

    5] Any Standing Orders that the panel may have
    been given.

    6] If a work programme has been drawn up for the
    panel, I request a copy.

    As outlined above, the panel is being established to
    look more closely at current research in CFS/ME, the
    panel will focus on the subtypes and causes of
    CFS/ME and will aim to identify and encourage new
    research towards increasing understanding of the
    basis of CFS/ME. The terms of reference will be
    discussed at the first panel meeting (date not yet
    arranged). We would be happy to send you a copy
    once they have been agreed.

    After agreeing terms of reference, the panel will
    discuss their priorities and any programme of
    activities at this, and subsequent meetings.

    As I have noted, further information about the panel
    will be published on our website as it becomes
    available. If you have any additional queries in the
    meantime or require any further information please
    do let me know.

    I hope that you find this information useful and that
    you are satisfied that we have handled your request
    appropriately. However, if you are not satisfied, you
    may appeal using the MRC's complaints procedure.
    Details are on our website at:

    You may contact the MRC Complaints Officer by
    email at [log in to unmask] .
    If, following the Complaints Officer's reply, you
    remain dissatisfied; you may contact the
    Information Commissioner. Details of how to take
    your complaint further are at

    Wendy Raymond Medical Research Council 20 Park
    Crescent London W1B 1AL DL Tel no 020 7670
    5211 Fax: 020 7436 2665


    *Professor Stephen Holgate's areas of expertise are
    listed as asthma, air pollution and allergies,
    genetics of asthma and allergy, genetics and virus
    infections (lung). Professor Holgate sits on a number
    of government scientific and advisory boards,
    already chairs or is a member of several Medical
    Research Council committees and sits on numerous
    scientific advisory boards, including the CFS
    Research Foundation's research committee. For MRC
    Declarations of Interest, research interests and
    consultancies see:

    Professor Holgate is also a Member of the James
    Lind Alliance Strategy and Development Group,
    2008. For further information about the James Lind
    Alliance see:

    Suzy Chapman
    ME Agenda
  2. mezombie

    mezombie Member

    If the panel will focus on subtypes and causes, yet have members who are psychiatrists and psychologists on it, one can bet more psychobabble will be funded.

    This just never ends, does it?
  3. tansy

    tansy New Member

    but there have been so many complaints, and MPs asking questions in The House about MRC funding for ME research, that I'm hoping they will make an effort to be seen as acting ethically.

    Unfortunately White, Wessely et al are doing their best to have ME erradicated and concentrate on vague chronic fatigue and tiredness. ME, and other illnesses, were all swept under one diagnostic umbrella; now as a result of that, and the govt's drive to get the sick back to work, the UK is not a nice place for anyone who is chronically sick, in constant pain, etc.

    Dr Daniel Peterson stated years ago that the problems surrounding ME and CFS had become political; it will take politicians to get things back on track.

    A few of our politicians know this and support the Gibson Enquiry recommendations; it'll take perserverance on all our parts to address this 20 year travesty.

    tc, Tansy
    [This Message was Edited on 05/28/2008]
  4. mezombie

    mezombie Member

    Ah, I see. So the formation of this panel is actually a step in the right direction.

    Peterson is right; this has been and continues to be a political problem.

    The increased awareness on the part of MPs about the lack of ME biomedical research in the UK is bound to pay off. Consistent contact will be necessary to ensure the MPs monitor this panel, but awareness of the problem is the critical first step.

    Go Tansy!


    P.S. I gather the MRC is equivalent to the US NIH or CDC?