wants to reply, the address is: letters@observer.co.uk
(letters@observer.co.uk) - don't forget to give contact details in
case they want to try to verify who you are. I wrote in to say that
while of course I abhor death threats, such behaviour shouldn't be
conflated with legitimate criticisms of some of the research (and then
gave some examples). Tom]
Chronic fatigue syndrome researchers face death threats from militants
Scientists are subjected to a campaign of abuse and violence
Robin McKie
The Observer, Sunday 21 August 2011
The full extent of the campaign of intimidation, attacks and death
threats made against scientists by activists who claim researchers are
suppressing the real cause of chronic fatigue syndrome is revealed
today by the Observer. According to the police, the militants are now
considered to be as dangerous and uncompromising as animal rights
extremists.
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 =96 who attack scientists who suggest the
syndrome has any kind of psychological association =96 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.
"I published a study which these extremists did not like and was
subjected to a staggering volley of horrible abuse," said Professor
Myra McClure, head of infectious diseases at Imperial College London.
"One man wrote he was having pleasure imagining that he was watching
me drown. He sent that every day for months."
Chronic fatigue syndrome =96 also known as myalgic encephalomyelitis
(ME) =96 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.
A similar hate campaign was triggered by a study published in the
Lancet earlier this year. It suggested that a psychological technique
known as cognitive behavioural therapy could help some sufferers. This
produced furious attacks on the scientists involved, including Michael
Sharpe, professor of psychological medicine at Oxford University. He
had already been stalked by one woman who was subsequently found to be
carrying a knife at one of his lectures.
"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.
None of the scientists contacted by the Observer believed chronic
fatigue syndrome was purely psychological. All thought external causes
were involved. "There is an element that is heritable," said Dr Esther
Crawley, a consultant paediatrician at Bristol University. "We also
know that in children it is often triggered by a virus infection,
while in adults it is associated with social deprivation. Stress and
adversity is involved. To call this yuppie flu =96 as people have done =96
is a complete misnomer."
Crawley has spent years trying to unravel the causes, but her refusal
to accept that the condition is a result only of organic external
factors has resulted in her being deluged with hate mail from
extremists. "You evil bastards =85 time is running out for you so you
have [sic] better start denouncing your flawed inhumane therapy and
pray to God for forgiveness," said one.
"To those who are responsible for preventing us sick ME sufferers from
getting the help we need ... you will all pay," stated another. "It is
depressing to receive emails like that, but I make sure that it does
not get me down," said Crawley. "I do check packages that are sent to
my office, however."
Many of the extremists' claims are bizarre, said Professor Simon
Wessely, of the Institute of Psychiatry at King's College London.
"They say I am in league with pharmaceutical companies in order to
suppress data that shows a link between viruses and the syndrome. But
why on earth would drug companies do that? If they could link the
condition to a virus they would be well on the way to developing
lucrative treatments and vaccines. It is crazy."
Wessely has installed speed dial phones and panic buttons at the
police's request and has his mail X-rayed. He gave up his research on
chronic fatigue syndrome several years ago, though he still treats
patients. "I have moved my research interests to studies of Gulf war
syndrome and other conditions linked to war zones," he said. "That has
taken me to Iraq and Afghanistan where quite frankly I feel a lot
safer =96 and I don't mean that as a joke."
=A9 2011 Guardian News and Media Limited or its affiliated companies.
All rights reserved.
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