RiME Letter to Daily Telegraph 10/2/10
Campaigning for Research into ME (RiME)
RiME is sending the letter below to the Daily Telegraph.
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ME: Biomedical Research: Appearances can be Deceptive
A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’. In the final paragraph it says, ‘Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness… ‘
This is all very well, but please note that three of the signatories are officers of the All Party Parliamentary Group on ME (APPG), with two others – the ME Association and Action for ME providing the secretariat. Over the eleven years the APPG has existed, the British Government has not put a single penny into ME biomedical research, preferring instead to fund psychological models of treatment, notably Cognitive Behavioural Therapy.
The APPG has to date devised no effective strategy for addressing that deficiency.
ME patients are frustrated in that the APPG does not adhere to accurate definitions of the neurological illness Myalgic Encephalomyelitis. Disappointingly, it supports Government Reports which are more to do with poorly defined fatigue and which recommend cheap, inappropriate options (psychological models of treatment) as far as ME is concerned.
The pivotal issue of biomedical research rarely appears on the agenda at APPG meetings; indeed, recent meetings have been largely about the clinics set up following the CMO Report on ‘CFS/ME’ 2002; clinics which offer the type of treatment described above and which ME patients throughout England condemn as inappropriate, if not irrelevant, to their plight.
RiME wrote to all 646 MPs in 2008 asking whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME. Only 66 have so far ticked the ‘Yes’ box. Many members of the APPG, including its Chair, have not even replied.
‘Breaking the ME enigma’ Daily Telegraph, 6 February 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