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
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.
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.
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
Dr Charles Shepherd
Hon. Medical Advisor, ME Association
Chairperson BRAME (Blue Ribbon for the Awareness of Myalgic Encephalomyelitis)
Chairman, Bristol ME Support Group
Julia Cameron and Lyna Sassoon
Members, North London ME Network
Treasurer, Carlisle ME/CFS Support Group
Chairman, Bourne and S.Lincs ME Support Group
Peter Ruberry and Ms Daphne Caton
Secretary and Co-editor Newsletter, Shropshire ME Group
Chairman, Hampshire Friends with ME
Member, Herefordshire ME Group
Dr Meg Pollock
Founder of Lochaber ME Support Network
Member, Blackpool ME Support
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)
Chairman, York and District ME Group
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
Chairman, Central Lancs M.E/CFS Support Group
Co-ordinator, Worcestershire M.E. Support Group
committee member, The Sunderland and South Tyneside ME/CFS Support group
Mrs Jo Calder
Administrator, Northern Ireland ME Association
Group Leader, ME Chat
Chief Executive, ME North East
Chair, Chester MESH
Member, Perth ME Support Group, Scotland
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)