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Breaking the ME enigma
Wednesday 10 February 2010
Twenty noted UK people associated with ME/CFS have written an open letter that was published in The Daily Telegraph.
The UK's ME Association reports:
'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
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
The above article originally appeared here.
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