Roy S
former DC ME/CFS lobbyist
- Messages
- 1,376
- Location
- Illinois, USA
From Facebook
Rosie Cox <https://www.facebook.com/rosie.cox1> Permission to repost
This letter was sent to The Independent today:
To
letters@...
Subject: Myalgic Encephalomyelitis
Sir,
We are patients and carers of patients who suffer from myalgic
encephalomyelitis, a neurological condition as listed by the WHO since 1969, for which there is no effective treatment or cure. We have been dismayed at the extensive coverage given recently to allegations that threats against psychiatrists are preventing research into ME. We have been appalled at comments by some members of the medical profession portraying ME patients in a
negative manner, and believe the comments to be professionally irresponsible and unethical. We are offended by the suggestion that grievances are based purely upon a prejudice against psychiatry. It is untrue and displays a blatant misunderstanding of the issues.
We and our families and friends do what we can to support charities like ME Research UK, Invest in ME, TYMES Trust and The ME Association because we want research to help us now and to prevent others suffering from this disease in the future. We believe the attention given to allegations of minority behaviour is disproportionate and should be balanced by serious coverage of the legitimate
grievances about the paucity of biomedical research and the lack of understanding,treatment and support for ME patients, all of which exacerbate the impact of the disease.
Yours faithfully
Yvonne Foss - (full address supplied)
Rosie Cox
Veronica Jones
Alison Orr
Lynn Swann
Jill Cooper
Joan Crawford, MA MSc CEng CSci
Tom Kindlon - Dublin
Connie Nelson
Jean Harrison - President MAME, Salem MA, USA
Linda Vansteenwinckel – ME/CFS-Evolving Science
Annabel Schleutker
Prue Schleutker
Wendy Reason
Horace Reid – ME Alliance Northern Ireland
Joan McParland and Newry & Mourne ME/FMS Support Group Committee Members
Louise Dalton
Richard Cann
Trevor Wainwright
Janice O'Malley
Elizabeth Moncrieff – Perth
Duncan Cox
Lesley Cox
Adrian Wood
Carole Gardner
Anthony Gardner
Charlie Mogg
James Cox
Joe Cox
Mary M. Schweitzer, PhD - USA
Matthew George Webb
Joann Molly Creed
Helen Jane Webb
Georgina Molly Webb
Kwende King Webb
Marilene Bierens – Netherlands
Annette Barclay
Roger Morgan
Tracey McCormick
Drew McCormick
Sara Marlow
Anne Robertson
Alison Wallace
Margaret Williams – East Kilbride
Roger Garnham
Jennifer Griffin
Serena Blanchflower
Gill Suttle – Ross-on-Wye ME Support Group
Carol Smith
Richard Ensor
Iain Lee – Fife
Wanda Lozinska
Laurence L. Swift
Daphne Caton
Maureen Stockburn
Wendy Jordan
Andy Micklethwaite
Kirsteen Wright
Dilys McGill
Salli Booth
Vicky Gifford
Rosie Cox <https://www.facebook.com/rosie.cox1> Permission to repost
This letter was sent to The Independent today:
To
letters@...
Subject: Myalgic Encephalomyelitis
Sir,
We are patients and carers of patients who suffer from myalgic
encephalomyelitis, a neurological condition as listed by the WHO since 1969, for which there is no effective treatment or cure. We have been dismayed at the extensive coverage given recently to allegations that threats against psychiatrists are preventing research into ME. We have been appalled at comments by some members of the medical profession portraying ME patients in a
negative manner, and believe the comments to be professionally irresponsible and unethical. We are offended by the suggestion that grievances are based purely upon a prejudice against psychiatry. It is untrue and displays a blatant misunderstanding of the issues.
We and our families and friends do what we can to support charities like ME Research UK, Invest in ME, TYMES Trust and The ME Association because we want research to help us now and to prevent others suffering from this disease in the future. We believe the attention given to allegations of minority behaviour is disproportionate and should be balanced by serious coverage of the legitimate
grievances about the paucity of biomedical research and the lack of understanding,treatment and support for ME patients, all of which exacerbate the impact of the disease.
Yours faithfully
Yvonne Foss - (full address supplied)
Rosie Cox
Veronica Jones
Alison Orr
Lynn Swann
Jill Cooper
Joan Crawford, MA MSc CEng CSci
Tom Kindlon - Dublin
Connie Nelson
Jean Harrison - President MAME, Salem MA, USA
Linda Vansteenwinckel – ME/CFS-Evolving Science
Annabel Schleutker
Prue Schleutker
Wendy Reason
Horace Reid – ME Alliance Northern Ireland
Joan McParland and Newry & Mourne ME/FMS Support Group Committee Members
Louise Dalton
Richard Cann
Trevor Wainwright
Janice O'Malley
Elizabeth Moncrieff – Perth
Duncan Cox
Lesley Cox
Adrian Wood
Carole Gardner
Anthony Gardner
Charlie Mogg
James Cox
Joe Cox
Mary M. Schweitzer, PhD - USA
Matthew George Webb
Joann Molly Creed
Helen Jane Webb
Georgina Molly Webb
Kwende King Webb
Marilene Bierens – Netherlands
Annette Barclay
Roger Morgan
Tracey McCormick
Drew McCormick
Sara Marlow
Anne Robertson
Alison Wallace
Margaret Williams – East Kilbride
Roger Garnham
Jennifer Griffin
Serena Blanchflower
Gill Suttle – Ross-on-Wye ME Support Group
Carol Smith
Richard Ensor
Iain Lee – Fife
Wanda Lozinska
Laurence L. Swift
Daphne Caton
Maureen Stockburn
Wendy Jordan
Andy Micklethwaite
Kirsteen Wright
Dilys McGill
Salli Booth
Vicky Gifford