UKer's important re; ME clinics response required

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 19, 2009.

  1. simpsons

    simpsons Member

    Permission to Repost

    Campaigning for Research into ME (RiME)

    NHS Services Inquiry

    RiME is about the neurological illness Myalgic Encephalomyelitis (ME) as
    described by ICD G93.3 ME and the Canadian Criteria.

    The Inquiry: Is it not about something else?

    It would appear that the clinics set up following the CMO Report 2002 are
    opening their doors to patients with a range of illnesses and conditions.
    This is apparent from referral criteria (see RiME Website, Clinics Folder)
    and feedback from people who have attended.

    In some cases eg clinics in Kent, according ot the referral criteria
    patients with neurological illness ie ME should actually be excluded.

    ME patients are boycotting the centres; not only because they feel they are
    irrelevant to their illness but because they deem treatments inappropriate
    and/or harmful eg: The Sussex service says patients need to be 'willing to
    have a biopsychosocial and management assessment'. Barts London uses GET and

    Consequently, is the Inquiry not flawed? And its results - will they not be
    skewed and misleading as far as G93.3 ME is concerned?

    We have a dilemma. Do we:

    (1) Boycott the Inquiry? To take that route I feel one would need to be
    confident that one had widespread support; this does not seem to be the

    (2) Submit evidence (but with qualification)?

    Having given the matter considerable thought and consulted widely, I say 2.
    But I would make the following suggestions:

    If you deem the project flawed then make this clear in the opening statement
    of your evidence.

    Then, if you have criticism of your local clinic(s), make those points.

    Setting up a Bank

    The Terms of Reference which are on the new Inquiry website - - say that written evidence has to be submitted by June 30
    (for details see end of piece).

    On the website is also a questionnaire which people who have attended
    services can fill in.

    Please send us a copy of whatever you submit.

    We feel it useful that a 'bank' of evidence is set up. If the Inquiry was to
    report favorably on the clinics 2010 saying along the lines that 'there were
    few, if any, adverse comments' that statement could then be rebutted (if
    substantial evidence from ME patients had been collated to the contrary).

    Copies of evidence sent to RiME would be stored away while the Inquiry is in
    process. RiME guarantees anonymity. If the evidence was published after the
    Inquiry reports, one would ask for people's consent and maintain patient

    NB Note that they ask for addresses on evidence. Dr Des Turner MP
    guaranteed anonymity at the APPG meeting April 1 2009 saying, 'Yes. I can
    give the assurance that we will not name anybody'. But I would make it clear
    still that you want your details treated confidentially, if that is the


    Evidence (last part of Terms of Reference)

    Organisations and individuals are invited to submit written evidence. The
    strong preference is for written evidence to be in Word format-not PDF
    format-and sent by e-mail to <>

    However it recognised that many people with ME will not have the use of
    computers or internet facilities and so typewritten scripts and legible hand
    written scripts will also be accepted.

    The body of the e-mail or covering letter must include a contact name,
    telephone number and postal address. The e-mail/covering letter should also
    make clear if the submission is from an individual or on behalf of an
    organisation. The deadline is 30 June 2009.

    Submissions must address the terms of reference. They should be in the
    format of a self-contained memorandum and should be no more than 3,000
    words. Paragraphs should be numbered for ease of reference, and the document
    must include an executive summary. Submissions should be original work, not
    previously published or circulated elsewhere, though previously published
    work can be referred to in a submission and submitted as supplementary
    material. Once submitted, your submission becomes the property of the APPG.
    The APPG will expect to publish the written evidence it receives.

    Evidence sessions are likely to commence 14 July 2009 and a later notice
    will give details of these.

    Paul Davis 10 Carters Hill Close, Mottingham, London SE9 4RS