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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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ME And The Perils Of Internet Activism
Monday 29 July 2019
From UK newspaper The Guardian:
 (Illustration: James Melaugh/The Observer) |
ME and the perils of internet activism
Research into the chronic illness, which affects 250,000 people in the UK, may be stalling because of online criticism and abuse
It’s become a truism of modern-day politics that social media and the online activism it enables have coarsened debate and left politicians vulnerable to campaigns of intimidation. What is less widely known is that the same is said of medical science. Earlier this year Michael Sharpe, a professor of psychological medicine at the University of Oxford, announced that he had withdrawn from research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), because the field had become “too toxic”.
Sharpe says that he has received “thousands of emails calling me every obscenity you can imagine” – largely from ME sufferers or their advocates. But this, he reckons, is not the real problem. What concerns him far more is when activists target the official machinery to undermine a professional reputation.
“I don’t know how many freedom of information requests we’ve had,” he says. “It’s well over 100. There have been three debates in parliament about the Pace trial with one or two MPs using parliamentary privilege to allege that we’re fraudulent scientists. We’ve had investigation by the Health Research Authority. Most of us have been reported to the General Medical Council in an attempt to get our medical licences removed. So you find yourself constantly under investigation for some kind of fraud or semi-criminality or medical misconduct. And that is the problem. You can’t function like that.”
The Pace trial, of which Sharpe was an author, was a landmark 2011 study published in the Lancet; that examined the effects of various therapies on people suffering from ME/CFS. The trial became the subject of controversy for several reasons. One is that it looked at ways of dealing with the symptoms of an illness rather than exploring a cure for a disease. Another is that it suggested there might be a psychological component to the manner in which sufferers experience the illness. And then finally, question marks were raised over the trial’s methodology.
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