Wednesday, October 14, 2009

"Has science found the cause of ME?" independent

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Hope at last for ME sufferers

Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.

I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria. After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.

How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is.

Rosey Lowry

Bury St Edmunds, Suffolk

The news of a possible scientific breakthrough in understanding ME is most welcome, though it needs to be treated with caution until replicated. If the research does prove to be a breakthrough, it will not be before time. As your leader so rightly points out, people with ME have suffered the most shameful neglect for far too long.

Action for ME has been calling for research into this disabling condition for over 25 years. The barrier has always been the prevalent but unproven theory that ME was psychosomatic. Now, with the publication of the US data, it is time to cast off the past and tackle research with the whole-heartedness such a debilitating and life-destroying illness deserves. It is not just money that is needed, but a new mindset on the part of doctors, researchers and government alike.

Clare Francis

President, Action for ME

London W8

What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?

Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?

Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary? Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics? Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?

This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long.

Hilary Patten

Frome, Somerset

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