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APPG Inquiry into NHS Services for people with ME/CFS (UK)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 3, 2009.

  1. Dolphin

    Dolphin Senior Member

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    MAY BE REPOSTED

    A copy of the APPG Interim Report, along with the press release issued by the APPG, can be found in the NEWS SECTION of the MEA website: http://www.meassociation.org.uk

    I will be preparing a fairly comprehensive summary of the APPG meeting and hope to have this completed by the end of today (Dec 3rd).

    The summary will also contain the MEA response to the Interim Report.

    Dr Charles Shepherd
    ME Association
     
  2. Dolphin

    Dolphin Senior Member

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    I've just read this.
    There are probably some quotable quotes in it.

    But I think people in the ME world need to be aware that all the training
    could make things worse not better if it encourages more doctors that GET
    and CBT based on GET are safe and effective treatments for everyone with
    "CFS/ME" (very likely given NICE guidelines etc).

    Also I don't think epidemiology is necessarily what charities should push
    for in the UK (have seen this before) - psychiatrists have got lots of
    grants in UK to do this over the years; think it often sets us back not
    brings us forward.
    Think it's better to concentrate on other things e.g. tests which might then
    make epidemiological studies in the future easier to do.

    More numbers in themselves don't help - it's generally accepted that
    Fibromyalgia is prevalent. 2-4% of the population might be accepted. Doesn't
    mean they get biomedical research, brilliant services, etc in the UK.

    Tom
     

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