Chronic fatigue syndrome researchers face death threats from militants

[salvorhardin]

Is XMRV the new Thimerosal? Apparently there is a small, but very vocal community of people who will go so far as death threats to defend their belief that the XMRV virus causes Chronic Fatigue Syndrome. It's somewhat amusing to picture listless, depressed CFS sufferers threatening anybody's life but it's easy to imagine this playing out the same as the disproven link between vaccines and autism.

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 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."

This point was backed by Fiona Fox, director of the Science Media Centre. "Using threats and intimidation to prevent scientists pursuing specific avenues of research or speaking out is damaging not just science. It harms society," she said.

Link: http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

Note: I posted this in Health as well, but I know many of this forum's regulars don't like to wade into those waters so I'm reposting it here.

[frogmarch]

1. Some people don't appreciate

insinuations that their particular illnesses are all in their heads. I can understand it. If someone were to tell me that a debilitating illness of mine was psychological, I'd probably react angrily too.

[LeftishBrit]

2. I don't just 'understand' it; I've experienced it

I've had Crohns disease since age 5, and at that time the medical profession didn't believe that children could get it. Therefore, until I was finally diagnosed at age 16, most interpretations seemed to focus on my being a neurotic attention-seeking child of neurotic overindulgent parents (mostly Mum of course, mothers were at that time to blame for everything; but there was one occasion when my Dad's serious illness was nearly missed because a doctor assumed he was suffering from over-anxiety about *me*!!)

However, attributing an illness to depression is not necessarily the same as saying it's imaginary. Depression is just as genuine an illness as Crohns disease, and is ALSO something that the medical profession used to think wrongly that children couldn't have - I know someone who suffered quite badly because of this belief.

Also, it goes without saying that intimidating researchers is not the way to go! If people don't like the research that's being done, then it would be better for them to campaign for funding of alternative types of research. Same goes for the people who don't like animal research!

[LeftishBrit]

3. O joy, every time you don' t approve of someone's research, threaten violence.

I can understand people who are desperate for a cure for a condition being upset if research seems to go against a theory that they thought might have helped them, but death threats are not the way to go!

I have probably mentioned that there are animal rights extremists who think that *all* members of my university are acceptable targets because of the construction of an animal research lab at the university. Guilt by association and all that. Delightful!

[salvorhardin]

4. At least it hasn't gone that far yet

There hasn't actually been any violence committed against CFS researchers, but death threats and abusive language should definitely be taken seriously.