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Worldwide petition to get access to secret ME/CFS files

Discussion in 'Action Alerts and Advocacy' started by Daisymay, Nov 10, 2010.

  1. curry

    curry Senior Member

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  2. drjohn

    drjohn Senior Member

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    'see what we can do Curry. Thanks for the tip. Cheers John.
  3. Cloud

    Cloud Guest

    Dr John....thanks for all your work.
  4. Daisymay

    Daisymay Senior Member

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    Great letter John, very well done! Thanks so much.
  5. drjohn

    drjohn Senior Member

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    Getting ever closer to that 1,000. I can see fingers hovering to be the one right on that button. Thanks to everyone for promoting it so well. Still a way to go with the letters but very satisfying worldwide co-operation. Best wishes John
  6. drjohn

    drjohn Senior Member

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    (Second version)
    LETTER: APPEAL TO MAKE CLOSED INFORMATION ABOUT M.E. and CFS FREELY AVAILABLE

    PERMISSION TO FORWARD, RE-POST IN ON-LINE GROUPS, FACEBOOK AND USE IN NEWSLETTERS AND MAGAZINES

    To: All co-signatories and other interested parties representing people with M.E.

    To keep you all up to date,
    The Times has chosen not to publish.
    I have sent our letter to The Guardian with new co-signatories added.
    I have done my very best but please excuse and let me know about any errors and omissions.

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

    Guardian Letters.

    Sir,

    Since a precedent has been established by declassifying information, which had originally been intended to be kept secret for 70 years, in the case of Dr David Kelly, following a letter from nine experts to a national newspaper, we ask for similar consideration for all material, including correspondence relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with the medical profession, embargoed for the same period of time until 2072.

    We, who represent as many as an estimated 250,000 sufferers in the UK, some for as long as 55 years, believe that such a revelation might yield up vital clues to an understanding of the disease process underlying M.E. now affecting millions of sufferers worldwide, which the majority of transfusion services treat sufficiently seriously to ban blood donations from people with M.E.

    Such increased knowledge may lead to the development of effective treatments, which could put an end to this global suffering.

    This appeal is in addition to a Freedom of Information Request submitted by me and a worldwide petition, still open for signatures (http://tinyurl.com/2wtp26d short link for http://www.thepetitionsite.com/264/...wnormalwview-wzoom0wzoom-wpunctuationkerning/)

    Yours sincerely
    Dr John H Greensmith
    Founder, ME Free For All.org

    Mrs Kathleen McCall
    Chairman, Invest in ME

    Sir Peter Spencer
    Chief Executive, Action for M.E.

    Countess of Mar
    Chairman, Forward-ME.

    Paul Davis
    Founder, RiME

    Dr Charles Shepherd
    Hon. Medical Advisor, ME Association

    Tanya Harrison
    Chairperson BRAME (Blue Ribbon for the Awareness of Myalgic Encephalomyelitis)

    Andrew Rees
    Chairman, Bristol ME Support Group

    Julia Cameron and Lyna Sassoon
    Members, North London ME Network

    Linda Daniels
    Treasurer, Carlisle ME/CFS Support Group

    Jan Limback
    Chairman, Bourne and S.Lincs ME Support Group

    Peter Ruberry and Ms Daphne Caton
    Secretary and Co-editor Newsletter, Shropshire ME Group

    Nick Farar
    Chairman, Hampshire Friends with ME

    John Simpson
    Member, Herefordshire ME Group

    Dr Meg Pollock
    Founder of Lochaber ME Support Network

    Jane Povey
    Member, Blackpool ME Support

    Derek Peters
    Director, Northern Ireland Campaign for ME

    Mrs Linda Webb
    Chair, Richmond and Kingston ME Group

    Mrs Jennifer Jones
    Co-Founder, East Kent ME Group

    Dr Norman E Booth
    Member, Oxfordshire ME Group for Action (OMEGA)

    Sandra Tomlinson
    Chairman, York and District ME Group

    Jenny Griffin
    Co-ordinator, Solihull and South Birmingham ME Support Group

    Mrs Susan Worrall
    Committee Member, Walsall and West Midlands ME Link

    Annette Barclay and Cath Ross
    Group Leaders, London ME Group

    Colin Briggs
    Chairman, Central Lancs M.E/CFS Support Group

    Connie Nelson
    Chairperson, ScotME

    Jean Harrison
    MAME Inc.

    Jill Pigott
    Co-ordinator, Worcestershire M.E. Support Group

    Pauline Donaldson
    committee member, The Sunderland and South Tyneside ME/CFS Support group

    Mrs Jo Calder
    Administrator, Northern Ireland ME Association

    Veronica Jones
    Group Leader, ME Chat

    Jennifer Elliott.
    Chief Executive, ME North East

    Joan Crawford
    Chair, Chester MESH

    Elizabeth Moncrieff
    Member, Perth ME Support Group, Scotland

    Helen Smith
    ME sufferer, Inverkeithing, Fife, Scotland

    The West Midlands ME Groups Consortium comprising:
    Herefordshire ME/CFS/FMS Group;
    Solihull & South Birmingham ME Support Group; Shropshire ME Group;
    Walsall & West Midlands ME Link;
    Warwickshire Network for ME;
    Worcestershire ME Support Group)

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

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