The Guardian: ME and the perils of internet activism | 29 July 2019



Russell Fleming, Content Manager, ME Association.

Professor Michael Sharpe, one of the authors of the discredited PACE trial continues to find a sympathetic media, this time in The Guardian in an article by Andrew Anthony that was published yesterday:

ME and the perils of internet activism

This latest article continues to shine an uncritical spotlight on an issue that we really don’t think stands up to scrutiny: that ‘activism’ alone is preventing researchers from working in the M.E. field. 

Dr Shepherd, Hon. Medical Adviser to the ME Association was interviewed at length by Andrew Anthony, but the few comments from him that have been used may not seem especially helpful given the final context of the piece.

Dr Shepherd, “…dismisses the notion of an abusive campaign as a story that has been overplayed in the media and which concerns “a tiny, tiny, tiny number of people sending emails to one of the handful of researchers in one particular area of research”.

The quotes selected by Mr Anthony followed a wide-ranging interview that covered topics relating to disease history, nomenclature, research and management of ME/CFS.


“There are 250,000 people with this illness,” Dr Shepherd says. “A lot of them feel very cross and angry about the way they have been treated by doctors. I mean, the numbers were probably 10 or 20 people who were accused of sending harassing or abusive emails.”

Items from the interview relating to significant and recent advances in biomedical research, including the the work of the ME Biobank and research into defective energy production at a cellular level, were omitted.

There was also no opportunity for Dr Shepherd to check or comment on the content or accuracy of his input before the article was published. The story casts an uncritical eye that draws mainly on Prof. Sharpe’s personal opinions.

At no time is the other side of this debate given a real voice. We don’t hear about the very legitimate concerns about the PACE trial and other research that exhibits questionable methodology, and the author doesn’t seem to consider that it might actually be worth listening to patients with ME/CFS.

The article doesn’t talk about the positive support people with ME/CFS continue to provide to researchers who have a genuine interest and who are willing to listen. Or about the significant support shown by people to charities like the ME Association.

No patients were interviewed or asked for their own experiences of the controversial treatments cognitive behavioural and graded exercise therapy (CBT and GET) or about any of the other issues raised in the piece.

Dr Tuller was not interviewed and the article’s author did not consider that credible scientists, clinicians and patients from around the world had expressed – and often had published in peer-reviewed journals – legitimate concerns about the PACE trial and other similar research.

The article is another in a series of recent examples involving Prof. Sharpe from journalists who seem much less interested in presenting a fair account of the debate and who would rather seek to reinforce stereotypes and seek sensational headlines.

We understand that this is an emotive area for people with ME/CFS. Dr Shepherd’s participation in the article was a genuine attempt to try and inject some balance to this recent spate of media coverage. We’re sorry it didn’t really work out that way.

Read the article:
The Observer ME/Chronic fatigue syndrome
ME and the perils of internet activism

Illustration: James Melaugh/The Observer


You might like to watch these new videos from M.E. patient, BrokenBattery, that again highlight the concerns about the PACE trial, the recent debate in the House of Commons and critical comment from researchers:

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