Breaking the ME enigma

Published: 12:02AM GMT 06 Feb 2010

http://www.telegraph.co.uk/comment/letters/7168531/Remarkable-reluctance-of-MPs-to-accept-responsibility-for-their-actions-in-claiming-expenses.html

SIR –

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