Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS South Australia Inc

Registered Charity 3104


Mailing address:

PO Box 322,
Modbury North,
South Australia 5092

1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm

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.


ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Become a Member
DOCX Application Form (Word, 198 KB)
Why become a member?

ME And The Perils Of Internet Activism

Monday 29 July 2019


From UK newspaper The Guardian:


Illustration: James Melaugh/The Observer
(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

By Andrew Anthony
Sunday 28 Jul 2019
© 2019 Guardian News & Media Limited or its affiliated companies. All rights reserved.

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this year Michael Sharpe, a professor of psychological medicine at the University of Oxford, announced that he had withdrawn from research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), because the field had become “too toxic”.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.


Full article…



blog comments powered by Disqus
Previous Previous Page