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Lynn Gilderdale








Breaking the ME enigma




Published: 12:02AM GMT 06 Feb 2010





The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.


Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.


Such lack of understanding even extends to blaming parents for the severity of their child’s illness.


It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.


Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.



Countess of Mar

Secretary, All Party Parliamentary Group on ME


Dr Neil Abbot

Operations Director, ME Research UK


Jane Colby

Executive Director, The Young ME Sufferers Trust


Anne Faulkner

Hon Director, CFS Research Foundation


Tanya Harrison

Chairman, BRAME


Malcolm Hooper

Emeritus Professor of Medicinal Chemistry, University of Sunderland


Andy Kerr MSP


Dr Jonathan Kerr

Consultant Senior Lecturer, St George’s, University of London


Simon Lawrence

Chairman, 25 per cent ME Group


Kathleen McCall

Chairman, Invest in ME


Dr Luis Nacul

Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor


Derek Pheby

National ME/CFS Observatory


Neil Riley

Chairman, ME Association


Dr Charles Shepherd


Dr Nigel Speight


Sir Peter Spencer

Chief Executive Officer, Action for ME


Des Turner MP

Chairman, All Party Parliamentary Group on ME


Dr William Weir


Mary-Jane Willows

Chief Executive Officer, Association of Young People with ME


Andrew Stunell MP

Vice Chairman, All Party Parliamentary Group for ME/CFS





Met dank aan Rob