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Request for UK case studies

Discussion in 'Action Alerts and Advocacy' started by Jenny, Feb 13, 2010.

  1. Jenny

    Jenny Senior Member

    Messages:
    1,233
    Likes:
    200
    London
    PERMISSION TO FORWARD, RE POST AND PUBLISH IN NEWSLETTERS FOR MAXIMUM
    BENEFIT

    Yesterday, I sent out a Press Briefing to complement a letter I had sent
    to
    editors of newspapers which, in the aftermath of the Kay Gilderdale trial,
    emphasised the need to ensure that the inevitable focus on assisted
    suicide
    did not make us forget the crucial matter of M.E. which has already, in
    the
    past, been hidden within misleading statistics of Chronic Fatigue Syndrome
    and the sufferers from view altogether because (1) people are too ill; (2)
    they stay hidden rather than be disbelieved or derided by the General
    Public
    or, worse, doctors; (3) it might get worse - children taken away; adults
    sectioned; (4) other people keep M.E. under wraps for their commercial or
    employment interests.

    We have had serious interest from all parts of the country - England,
    Scotland, Wales, Northern Ireland - and the Republic of Ireland for case
    studies to illustrate the rest of the story I am giving them that we
    cannot
    trust the official statistics because they are no more than a guess, that
    even the otherwise better controlled studies are polluted by the
    indiscriminatory CFS and in the absence of an money coming from Government
    for research and it being out of the reach of charities and
    philanthropists
    that we do it ourselves for no reward other than the work itself.

    This is a good opportunity to make sure that Kay's wish is fulfilled that
    Lynn Gilderdale is remembered as a symbol of getting M.E. taken more
    seriously. It may be tough for some of you consider doing this but we want
    people who really do have M.E. and who have been unable to work, go to
    school, or have any social life for decades - not any other condition with
    chronic fatigue and certainly not anyone who has been "helped" by some
    faddy
    diet or miraculous cure. We are telling it as it is but with the belief
    that
    things could change with the right approach.

    We do want M.E. sufferers from every part of the country. I should have
    given you enough information here for you to work out the sort of person I
    would like to hear from (and the sort who need not bother). If you are
    willing to do it, send an e-mail to drjohngreensmith@mefreeforall.org with
    "Case Study Volunteer" with City or County in the subject line. If you
    know
    someone else who might be willing, pass it on.

    Best wishes
    John

    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All. org
     
  2. Bump! I haven't been ill long enough to offer my story up for this. But I am pretty sure we have some UK members that match this profile.
    This is a GREAT chance to influence the powers that be.
    Please, speak up if you're there and willing...

    Rachel xx
     
  3. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Reformatted for easier reading

    Request for UK case studies

    PERMISSION TO FORWARD, RE POST AND PUBLISH IN NEWSLETTERS FOR MAXIMUM BENEFIT

    Yesterday, I sent out a Press Briefing to complement a letter I had sent to editors of newspapers which, in the aftermath of the Kay Gilderdale trial, emphasised the need to ensure that the inevitable focus on assisted suicide did not make us forget the crucial matter of M.E. which has already, in the past, been hidden within misleading statistics of Chronic Fatigue Syndrome and the sufferers from view altogether because (1) people are too ill; (2) they stay hidden rather than be disbelieved or derided by the General Public or, worse, doctors; (3) it might get worse - children taken away; adults sectioned; (4) other people keep M.E. under wraps for their commercial or employment interests.

    We have had serious interest from all parts of the country - England, Scotland, Wales, Northern Ireland - and the Republic of Ireland for case studies to illustrate the rest of the story I am giving them that we cannot trust the official statistics because they are no more than a guess, that even the otherwise better controlled studies are polluted by the indiscriminatory CFS and in the absence of an money coming from Government for research and it being out of the reach of charities and philanthropists that we do it ourselves for no reward other than the work itself.

    This is a good opportunity to make sure that Kays wish is fulfilled that Lynn Gilderdale is remembered as a symbol of getting M.E. taken more seriously. It may be tough for some of you consider doing this but we want people who really do have M.E. and who have been unable to work, go to school, or have any social life for decades - not any other condition with chronic fatigue and certainly not anyone who has been helped by some faddy diet or miraculous cure. We are telling it as it is but with the belief that things could change with the right approach.

    We do want M.E. sufferers from every part of the country. I should have given you enough information here for you to work out the sort of person I would like to hear from (and the sort who need not bother). If you are willing to do it, send an e-mail to drjohngreensmith@mefreeforall.org with Case Study Volunteer with City or County in the subject line. If you know someone else who might be willing, pass it on.

    Best wishes
    John

    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All. org
     

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