Chronic fatigue researchers bullied, intimidated by protesters

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British researchers who were focusing on psychological and mental issues linked to chronic fatigue syndrome have received death threats from protesters angry at their research area. The condition termed myalgic encephalomyelitis (ME) has been studied for many years now with unclear reasoning into its causation and pathology.

Professor Simon Wessely, a scientist based at King's College London said, “It's direct intimidation in the sense of letters, emails, occasional phone calls and threats…I think sadly some of the motivation here comes from people who really do believe that any connection with psychiatry is tantamount to saying there is nothing wrong with you, you are making this up... That is profoundly misguided.”

The causes of chronic fatigue syndrome are currently unknown but symptoms include severe and debilitating tiredness, muscle and joint pains, sleep problems and memory loss.

A doctor representing sufferers in Britain said there was anger about the way the condition was being probed. Charles Shepherd, medical adviser to the ME Association, said threats to scientists were “completely unacceptable” but called on the British government to support more research into the possible biological causes. “I think you need to put this into the context of the fact that we have about 250,000 people with this illness (in Britain). A very, very tiny minority of these people are involved in this sort of behavior,” he said.

Hostility towards a psychiatric explanation for Chronic Fatigue Syndrome reached a peak in 2009 when research published in the journal Science appeared to show a link to the XMRV retrovirus.

But a series of follow-up studies failed to replicate the finding, unleashing another torrent of abuse - this time aimed at virologists, including Professor Myra McClure, of Imperial College, London. “It really was quite staggeringly shocking, and this was all from patients who seemed to think that I had some vested interest in not finding this virus,” she said. “I couldn't understand, and still can't to this day, what the logic of that was. Any virologist wants to find a new virus.” Professor McClure says she will not be doing any further research in this area, and that may be the single most important consequence of this campaign of abuse and intimidation.

According to the Wellcome Trust's Dr Mark Walport it would be a tragedy if serious researchers are put off working on Chronic Fatigue Syndrome. He said, “We clearly don't yet understand exactly what's going on, and if we're going to find out it needs good scientists to work on it…But why would any scientist work on it if they know that all they're going to receive is a torrent of abuse?

A spokesman for the charity Action for ME said: ‘We strongly advocate the need for far more biomedical research to identify biomarkers which can aid diagnosis and of course more effective treatments and a cure for ME. “We too do not condone death threats or abuse and emphasize that such action comes from a very small minority of the 250,000 men, women and children across the UK who are affected by this very  debilitating illness”.

Dr. Ananya Mandal

Written by

Dr. Ananya Mandal

Dr. Ananya Mandal is a doctor by profession, lecturer by vocation and a medical writer by passion. She specialized in Clinical Pharmacology after her bachelor's (MBBS). For her, health communication is not just writing complicated reviews for professionals but making medical knowledge understandable and available to the general public as well.

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Comments

  1. LGH LGH Australia says:

    I find this mass media coverage of this "Dr's" claims of harassment laughable, considering the precarious state of health of many people with ME. Why are his reports given any credence when he doesn't provide any proof? It seems convenient he is drumming up all this attention when he is about to publish a book. If the journalist who wrote this wants to cover a real story, may I suggest you look into Dr Wessley's treatment of Ean Proctor, here are a couple of places to start:
    http://www.youtube.com/watch?v=OJmis85FM4s
    www.ahummingbirdsguide.com/wmarwilltstrsaep.htm

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