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ME research charity flourishes in modest surroundings
Friday 11 September 2009
Think of a cutting-edge medical research institution and you’d be forgiven for imagining a gleaming grass fronted clinic set against among the rolling hills of Switzerland; supported by a multi-million pound budget and staffed by hoards of white coated researchers.
Yet, nestled away in a quiet corner of Sarratt Village exists a determined group at the very forefront of the battle against one of the most baffling, debilitating illnesses known to the medical world – Chronic Fatigue Syndrome.
Commonly known as ME, the illness affects more than 250,000 patients in the UK alone; confining many sufferers to bed and leaving countless others unable to enjoy a normal life.
Sympathy, however, has for a long-time been in short supply, with many sufferers exposed to ridicule and contempt – in many cases by the medical profession itself, which has been unable to find a definitive cause (let alone a cure) since the condition was first classified in the 1960s.
The CFS Research Foundation, run by a small team of trustees, part-time staff and volunteers from a garden office in the village, has, since its launch in 1993, fought to right these wrongs, commissioning more than £1 milllion of research and helping to educate the professional world.
Charity director Anne Faulkner founded the charity with her late husband after witnessing the effects of the illness on a close family member. Her goal is to improve understanding, research treatments and develop a diagnostic test.
She said: “We’re fighting against a really cruel and debilitating illness; to help find a cure and also to educate people about the condition.
“It affects people in different ways; some simply can’t get out of bed and others can just about hold down a full-time job but collapse into bed at the end of it.
“I doubt there will be a single cure in my life-time but our understanding is growing all the time and people’s attitudes are changing.
“In the past, many people, including doctors, would just say ‘pull yourself together and get on with it’. There was a real stigma attached to it.
"But as a foundation we’ve achieved some great results with some of the leading academics in the field.”
These results have directly contributed to an enhanced understanding of the 88 genes damaged by the condition.
Mrs Faulkner admits the foundation is far from typical. It is, however, successful.
She added: “When we first started people said we would get nowhere with it; that we could discover nothing on our own.
“But in the last few years we’ve really moved mountains. You don’t need luxury offices to get things done.”
The full article can be found here.
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