Saturday, February 6, 2010

20 Key Figures sign letter in UK newspaper

Thanks to Mary for spotting this one!
Check THIS out!

'Breaking the ME enigma'
- 20 key figures sign letter in the Daily Telegraph today,
6 February 2010
Saturday, 06 February 2010 07:54    

A joint letter appealing to the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate – including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.

Breaking the ME enigma 


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

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