Medical Research

Dangers of research into chronic fatigue syndrome

BMJ 2011; 342 doi: http://dx.doi.org/10.1136/bmj.d3780 (Published 22 June 2011)
Cite this as: BMJ 2011;342:d3780

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  1. Nigel Hawkes, freelance journalist
  1. 1 London, UK
  1. nigel.hawkes1{at}btinternet.com

Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition

There are jobs that carry a risk, such as volunteering as a human cannon ball at a funfair. There are jobs that attract opprobrium and abuse, such as becoming an estate agent, driving a white van, or selling double glazing over the telephone. And then there is the job of trying to conduct research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

CFS/ME is a common condition, and very debilitating. The evidence suggests a population prevalence of at least 0.2-0.4% in the UK.1 Patients are incapacitated for years, unable to move, sometimes bed ridden and fed through a tube. Yet it doesn’t prevent some people, who claim to be its victims, from conducting a relentless personalised attack on doctors and academics who are trying to discover its cause and improve its treatment.

Simon Wessely, professor of epidemiological and liaison psychiatry at King’s College School of Medicine in London, has been the target of such attacks for years. He’s been compared on the internet to Josef Mengele, the Nazi doctor who performed experiments on inmates of concentration camps. He’s had threats against his life, been accused of throwing a boy into a swimming pool to check if his paralysis was genuine, been bombarded with offensive emails, and had complaints against him made to his employers and to the General Medical Council.

The campaign has gained new life since the publication in March in the Lancet of the PACE trial, a comparison of four treatments for CFS that concluded, to the fury of the campaigners, that cognitive behavioural therapy and graded exercise therapy can be effective. Pacing, a treatment favoured by leading ME charities, was found to be ineffective.2

The publication prompted a …

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