Reproduced with kind permission of the Watford Observer, Hertfordshire, UK*
“Fighting against a really cruel and debilitating illness,” six volunteers in an English village are moving mountains.
Think of a cutting-edge medical research institution and you’d be forgiven for imagining a gleaming glass fronted clinic set 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 (Hertfordshire, in the Southeast of England) exists a determined group of volunteers 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 150,000 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 (www.cfsrf.com), run by six dedicated volunteers from a garden office in The Briars, has, since its launch in 1993, fought to right these wrongs, commissioning more than £1 milllion ($1.63 million) of research and helping to educate the professional world.
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, and treatments and develop a diagnostic test.
“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 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.
“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.”
[Note: As detailed on their website (www.cfsrf.com), the CFS Research Foundation has to date funded nearly 20 “gold standard” research projects, advancing the knowledge of such pivotal issues as post-exercise fatigue, enterovirus infection, mitochondrial dysfunction, gene expression in ME/CFS, and genetic subtypes. An ongoing international study, led by Dr. Jonathan Kerr and colleagues at St. George’s University of London, is focused on discovering more about genetic subtypes.]
* Reproduced with kind permission of the Watford Observer (www.watfordobserver.co.uk), Hertfordshire, UK, this article was first published online August 10, 2009.