Wednesday, January 19, 2011

Letter to the Editor: declassifying ME/CFS information

By Dr John H Greensmith, ME Free For

Letter to the Editor

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 ( short link for

Yours sincerely
Dr John H Greensmith
ME Free For

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

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

Norma Turner
Administrator, Dumfries and Galloway ME Network

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)

Dr John H Greensmith
ME Free For

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