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Wednesday, September 7th 2011

Patient Advocates

Understandably patients and families and friends of patients can become strong advocates for the disease community of those who suffer from a condition.

In unique circumstances that advocacy stretches into the science behind the condition. Consider Jenny McCarthy’s promotion of the discredited tie between vaccines and autism. Indeed advocacy and researchers seem to cross paths and sometimes butt heads the most when we’re dealing with disease for which the pathophysiology is poorly understood. Along with autism other examples might include fibromyalgia or chronic fatigue syndrome. Some though carry their well ingrained beliefs into the interaction, attempting to intimidate research into directions in line with those beliefs. Consider this story from The Guardian on threats made against chronic fatigue syndrome researchers,

Chronic fatigue syndrome – also known as myalgic encephalomyelitis (ME) – is common and debilitating. A recent BMJ (formerly the British Medical Journal) feature suggested that as many as one in 250 people in the UK suffers from it. Patients are sometimes unable to move and become bedridden, occasionally having to be fed through a tube. For more than 20 years, scientists have struggled to find the cause, with some pointing to physiological reasons, in particular viral infections, while others have argued that psychological problems are involved.

It is the latter group that has become the subject of extremists’ attacks. The antagonists hate any suggestion of a psychological component and insist it is due to external causes, in particular viruses. In the case of [Professor Myra] McClure, her “crime” was to publish a paper indicating that early studies linking the syndrome to the virus XMRV were wrong and the result of laboratory contamination. So furious was the reaction that she had to withdraw from a US collaboration because she was warned she might be shot.


“The tragedy is that this tiny group of activists are driving young scientists from working in the field,” said Sharpe. “In the end, these campaigns are only going to harm patients.”

Unfortunately anecdotal experiences with poorly understood diseases, no matter how life altering or personal, give poor insight into etiologies and such. Ignoring the science, or worse trying to alter the science with intimidation, is reproachable and indeed in the examples listed in The Guardian article downright disgusting.