Chronic fatigue research sparks death threats

Since I’ve been in the science sector, I’ve heard about scientists in the UK involved in animal testing receiving death threats as well as Australian climate scientists being intimidated.

Source: The Observer
Source: The Observer

I’ve also heard unconfirmed reports that at least one genetic modification scientist in New Zealand left the country a few years ago because of intimidation from anti-GM protestors.

So the heavying of scientists who work in controversial areas of research isn’t new – but now you can add chronic fatigue to the professionally high-risk reseach areas.

The Observer reports that scientists in the UK are receiving death threats from activists who claim they are covering up the real causes of chronic fatigue syndrome, a debilitating illness that scientists have been seeking to understand for at least 20 years.

One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.

In addition, activists — who attack scientists who suggest the syndrome has any kind of psychological association — have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.

Source: Observer
Source: Observer

One scientist, Professor Simon Wesseley, said he felt safer doing research into Gulf War syndrome and similar conditions in places like Iraq and Afghanistan than he did in Britain researching chronic fatigue syndrome.

Other scientists are installing panic buttons and having their mail x-rayed.

So what is it about chronic fatigue research that is stirring up the type of hatred usually reserved for vivisectionists?

Well, chronic fatigue syndrome, or myalgic encephalomyelitis (ME) is bloody horrible. It can leave you in a permanent malaise of exhaustion, pain, befuddlement, that for some results in total incapacitation. At best it can be like mild, but lingering jet-lag. At worst – you’ll end up being fed through a tube. The annoying thing is that the cause of it is unknown. It is thought to be a condition that affects the nervous system, but scientists don’t really know for sure.

But it is the suggestion that the condition may be at least partly psychological that has people baying for the scientists’ blood. As the Observer explains:

The antagonists hate any suggestion of a psychological component and insist it is due to external causes, in particular viruses.

Insurance company Southern Cross estimates between 10,000 and 20,000 New Zealanders suffer from chronic fatigue syndrome. A survey of general practitioners back in 1993 showed wide a 90% acceptance rate of chronic fatigue syndrome as a clinically valid diagnosis. The survey followed controversy when the small Otago town of Tapanui in the 1980s appeared to be the site of a cluster of cases of chronic fatigue syndrome, which became known locally as Tapanui flu. In 1984, Tapanui GP Peter Snow was the first to describe an outbreak of an illness characterised by chronic fatigue. In 2002 he published this piece in the New Zealand Medical Journal reflecting on the cases. He writes:

Since that period, much research has been done and published. However none have been able to implicate a single all encompassing aetiology…Unfortunately chronic fatigue syndrome has become a convenient dumping ground for the difficult to diagnose. Fatigue is a presenting symptom of many disorders.

One thing is for sure – it is crucial that research into this condition continues and that scientists we allowed to pursue their research unmolested. My colleague at the Science Media Centre in the UK says it best in the Observer article:

Using threats and intimidation to prevent scientists pursuing specific avenues of research or speaking out is damaging not just science. It harms society.

It seems that

One Comment

  1. Grant Jacobs

    But it is the suggestion that the condition may be at least partly psychological that has people baying for the scientists’ blood.

    To add to what you have written, for some it is research opposing that XMRV (a mouse retrovirus) might be a cause of CFS that has them ‘seeing red’.

    I saw a little of this general type of thing (but without death threats) a little over a year ago when I used the investigation into if XMRV was a potential cause of CFS as an example of how the media need to report the ‘state of play’ when reporting new findings in science.

    Long story short because of the commentary I received I poked my nose in the various CFS/XMRV “support” groups to try understand the fuss.

    What particularly caught my attention was open personal criticism of any science groups or scientsts whose findings opposed XMRV as a possible cause of CFS – essentially bullying those whose work opposed their personal view.

    As Fiona Fox said, threats and intimidation is not a sound way to approach scientific results: you have to go wherever the data leads.

    I posted a comment just this morning linking to yet another research investigation adding weight to that the observations of XMRV in human cell are likely to be contamination. This is where the evidence on the XMRV/CFS story has been leading for some time now.

    My impression is that some of this—at least in the XMRV/CFS case—stems from championing a ‘leader’, a researcher who they hold as essentially ‘their champion’. They then oppose anyone whose work contradicts their champion’s work.

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