‘Chronic fatigue syndrome researchers face death threats from militants’, The Observer, 21 August 2011

August 21, 2011

From The Observer, 21 August 2011 (story by Robin McKie)

Scientists are subjected to a campaign of abuse and violence

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 – 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.

“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 – 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.

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 – as people have done – 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 … 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 – and I don't mean that as a joke.”

23 thoughts on “‘Chronic fatigue syndrome researchers face death threats from militants’, The Observer, 21 August 2011”

  1. This is truly obscene, this cartel of hyperbole and hysteria from SW and pals. Why are they still going on about this? And added details of knives? I also see SW has changed his wording about Iraq, he is less glib now. Has the Science Media Centre secured them a slot in every newspaper ever weekend til the end of time? It is time these people grew up, and left biomedical researchers to do the real job. If they want to research nebulous chronic fatigue, apparently common! – ME is NOT common – that’s fine. But please leave those of us with neuroimmune illness alone and stop causing us harm with your obsessions and inability to embrace actual science.

  2. Any form of extremism is repugnant, but I find the latest round of media attention about the problems faced by researchers from the M.E. community serendipitous in its timing, to deflect attention away from the Atos problem and the new Canadian model.

    Perhaps Esther Crawley would like to expand on her theory of “social deprivation” as the cause for my M.E. as I have found that any form of social deprivation I have suffered has been as a result of my illness, not the cause of it. I considered myself to be pottering along nicely in my life, thank you very much.

    I was not well off, but comfortable, good job, nice house, close family, my first beautiful grandchild and a relaxing holiday abroad every year. Then my life turned upside down and I found myself unable to work, financially embarrassed, unable to hold and play with my grandchildren and having lost many friends and any pretence at a social life. The last 7 years of my life have taught me all about social deprivation and how anyone could believe that we would choose this life if there was any chance at improvement, by any treatment whatsoever totally bewilders me.

  3. The correct E-mail address for the Observer is letters@observer.co.uk

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    The editor wishes to acknowledge your email with thanks.

    Unless you have indicated to the contrary, it will be considered for
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    Please do not reply to this email, as the account from which it is sent
    cannot accept incoming email. Instead use letters@observer.co.uk

    It was good of you to take the trouble to write.

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  4. Since the publication of the International criteria for ME in mid July, the british press have had an almost month long media frenzy on the plight of Poor Professor Wessely and those of his ilk. It saddens me greatly that not a single journalist reporting on this plight have asked some very basic questions. It appears from the reporting in various press and journals over the last four weeks that these threats are a “few” from a global population of 14 – 17million estimated patients. A tiny tiny minority behave in this inappropriate way but the whole of the patient population is tarred with the same brush. This is also entirely inappropriate behaviour. Not one journalist questions the validity of Professor Wessely et al’s continual promototion of their psychosocial theories of this illness in spite of the biomedical research published which tells a very different story (5000+ papers to date). The biomedical research is, by and large, completely ignored by the British media. There is no reasoned debate on ME/CFS. Instead of the reasoned debate that I would expect from individuals at the top of their profession, the Wessely school psychiatrists go on an all out attack on the ME/CFS patient population again and again. The result of 20+ years of this behaviour has resulted in the denegration and neglect of the ME/CFS patient population, stigmatised ME/CFS to the detriment of patients and misrepresented the severity of this illness to the general public.

  5. I am so sad that my favourite lifetime Sunday paper has succumbed to making so much of this minority menace. The Wessley wing are blowing this up into a propaganda storm. I wonder why. Could it be anything to do with the recent publication of International Criteria for ME as Anne suggests? Perhaps it is the ‘last fling’ of the wing or ‘throw of the dice’ even. Just wish I hadn’t thought this so many times in the last 25 years.

  6. Tom, I tried to send reply – using my full name in email address- but I got no autoreply. I suspect they have blocked me – cos when I emailed again from yahoo alias they auto-replied immediately.

    Here is my letter, pretty sure they won’t publish it: I really am fed up using portions of my weekends to respond to this grotesque media distortion of our illness. But we have to fight back.

    Dear Editor

    RE. Scientists face stream of ME death threats:

    I’m disappointed to see the Observer join in this cartel of hyperbole and bias from Professor Wessely and his followers on the subject of ME. One wonders why, since the alleged threats are from a tiny, tiny minority, Professor Wessely feels the need to be courting such dramatic headlines week after week? Could it have anything to do with the ‘International Consensus Criteria for ME’ published in the Journal of Internal Medicine in July, which agree on post-exertional neuroimmune exhaustion (PEM) as the defining feature of ME? Unfortunately, patients know only too well that Drs Wessely and Crawley – and the others – do not study neuroimmune ME, they study – by their own criteria – a broader, less disabling, less complex fatigue that appears to respond to graded exercise and CBT. I was diagnosed with virally-induced myalgic encephalomyeltis (ME) – the label ‘CFS’ had not yet been coined – in 1984 by a consultant neurologist, so it’s fair to say I have an in-depth knowledge of the illness. I was transformed from a vibrant, straight ‘A’ undergraduate to a grey and bedridden 20-yr-old. I contracted an enterovirus and never recovered. Almost thirty years later, I remain ill. Graded exercise makes me worse, and Crawley’s talk of social deprivation and stress and adversity as a cause in adults is nonsensical to me.

    Nasim Marie Jafry, author of ‘The State of Me’

  7. Hi Nasim, sorry to hear you didn’t get an autoreply from your main address. I just sent a letter in and got the autoreply (I had initially written to another address as I thought that might be the address from the website).

    If you send it in from the yahoo alias address, it might work if you give all your correct details (if in doubt, they can ring you). The readers won’t need to know about your alias address so it could be ok.

    I think sometimes auto-replies don’t always work or if you have written before, they might not come up again (depends how it is set up – I have across software that works like that e.g. if somebody is on holiday, people might only get one message that the person is away even if they write more than once).

    Somebody said today the average letter to the paper wasn’t short so your letter could be a reasonable length (some people write very long letters which are very hard to get published in national newspapers – although some newspapers do edit letters down).

  8. When unrest broke in the country, President Ben Ali blamed it on “terrorists” – a reaction very symptomatic of dictators completely detached from reality who rush to lay the blame on a scapegoat to deflect attention from the core issue: that He alone is to blame.

    His fear tactic backfired. He later backtracked by firing his closest aides, apologising for not listening to his people and promising more liberties and rights.

    Col Gaddafi said true Libyans had not demonstrated but those who had come on to the streets were under the influence of drugs supplied by al-Qaeda

    Speaking on Egyptian state television, President Hosni Mubarak blamed Islamists for the violence that has engulfed the countrywide demonstrations, alluding to the Muslim Brotherhood, Egypt’s largest “opposition group.”

    scapegoating – from a medical dictionary

    Process in which the mechanisms of projection or displacement are utilised in focusing feelings of aggression, hostility, frustration, etc., upon another individual or group; the amount of blame being unwarranted.

  9. From the MRC page
    Timetable re the MRC funding applications
    The key dates are listed below:

    Submission deadline
    7 June 2011

    Peer review (external)
    June 2011 – September 2011

    Applicants’ response
    October 2011

    Prioritisation Panel meeting
    November 2011

    Applicants receive notification of outcome
    November 2011

    Awards announced
    December 2011

    1. Thanks Jane for the update.

      I had been wondering what the timetable was. Roll on December 🙂

      1. The MRC timetable sums up a characteristic lack of urgency.
        It will have been almost a full year since the very modest £1.5m of funding was announced, to when projects are selected and actually getting underway.
        One therefore concludes that this is not a serious attempt at solving the problem, but is instead, a morsel handed out for the purpose of silencing their critics.
        Too little, too slow, too late.

  10. This media bombardment to discredit ME is completely unacceptable – on both sides; the tiny minority causing great damage in their misguided actions and the group of ‘experts’ trying to promote the psychosocial model of ME at any lengths, ignoring all biomedical advances made in the last 10 to 20 years.
    Following the tragic death of Lynn Gilderdale, a group of eminent researchers/doctors; representatives and high profile MPs, put their names to an excellent letter in the Daily Telegraph (6 Feb 2010). Where are they now?
    Throughout this year the coverage of ME in the media has been damaging and misleading and I personally feel I have been transported back to the 1980’s. I never thought I would live to see a return to the level of doubt and disbelief that ME sufferers are once again subjected to. Not one aspect of the media or any journalist has bothered to give any time or thought to the thousands of ME sufferers who are severely affected, who quietly drag themselves through each day or the supporting evidence in biomedical research, conducted around the world, that cannot just be swept under the carpet and ignored.
    These are bleak times if you suffer from ME – when you have no fight left it makes you want to just crawl under a stone.

  11. This cleverly distilled – and entirely unquestioned by journalists – version of ME being served up to readers and viewers of BBC/Times/Observer etc this last few weeks is simply chilling.

    We have no strong representation in the media, no one appears to be standing up for us. Apart from a couple of – heavily edited – letters in the Times, where is our defence?

    We need robust advocacy. We need it now!

    Yup, we have our very own version of Middle East dicator right here. I agree entirely with @edbernays’ observations.

  12. I think the point that is being made above is that the current flood of negative publicity may affect the vital decisions being made at the moment on research proposals by the MRC.

    What do others think? Could this happen?

  13. This ties in very nicely with the Guardian connection;

    ‘Unum has already begun its marketing initiative with a supplement and website partnership with the Guardian which will continue.’

    UNUM are the largest disability/permanent ill health insurers. New Labour took their model and used it for how the DWP handle sickness and disability claims. UNUM allegedly prefer the psychological model of CFS as psychological illnesses are not viewed as lifelong and incurable.

    Read more: http://www.ifaonline.co.uk/cover/news/2083156/unum-unveils-consumer-campaign#ixzz1VlSt0DSO

    Does anyone have any evidence that Prof Wessely has any links with UNUM or any other insurance company? I know Martin J Walker, Prof Hooper and Margaret Wiiliams have written about it but does anyone has any links of firm evidence? Cheers.

  14. Hi, yes currer that was my point. Perhaps SW thinks it may affect the decisions, but personally, i don’t believe that there’ll be decisions made which will be of benefit to us anyway.
    The MRC said they’d look into symptoms of CFS, not the causes and cure for ME. They’re not gonna upset the status quo after all are they? And researching individual symptoms can go nowhere for many years can’t it. They’re not daft!

  15. I have to ask the question.

    In 15 years of being ill with this condition, I have never been defamed for having ‘Yuppie Flu’ personally, and only once met someone who casually remarked “Oh you have ME? They used to call that Yuppie Flu” without any clear implication.

    For me, the most common reproduction of the term Yuppie Flu seems to come from people in the press purporting themselves as combatants of some great social injustice.

    Does anyone else just wish they’d stop reminding people that the term existed?

  16. NMJ wrote:”I agree entirely with @edbernays’ observations”.
    These were news clippings, sorry, didn’t make that at all clear. But it seems kind of automatic behaviour when it’s realised your fall may be imminent. At the Bond gig in Oz Warren Tate “explained how recent XMRV findings had stimulated research…”. Sheer terror. Partly hence these propaganda jobs. In time, the wheels will fall off Smiley PACE, and all who sailed in her (about 19? “authors” – Wow!). Nonsense, or non-science, but a chilling vision revealed via their manuals. The more essential message from this Fox individual takes that biscuit well. Au contraire, society needs to wake up, they’ve blindly handed control to “experts”, and that’s dangerous. Think Tuskegee, HIV, breast cancer etc etc. At Bond, Mieke van Driel “recommended that we should let patients guide the research agenda by teaching us what works for them” in her particular context. Good idea generally. RCT’s, even unblinded, non-randomised, uncontrolled ones, can be pretty cute, in the right hands. A huge danger to society in the wrong (DWP Insurance helpers etc). Society, or people, can’t be removed from that equation Ms SMC Fox. They really seem to have a problem with authority .. and other people … that Mieke van Driel doesn’t, apparently. “Ordinary” people need to unite against this ugly authoritarianism.

  17. In the background one of them is peddling their latest hopeful variation on MUS, MUPS etc to keep “CFS” as “mental” . Mine, mine, mine ! “Parallel session 2 Improving our treatment of bodily distress syndromes Chair: Professor Francis Creed University of Manchester Speakers: Professor Peter White Queen Mary, University of London Professor Chris Williams University of Glasgow Dr John McBeth Keele University Professor Francis Creed University of Manchester” MHRN 2011 National Scientific Meeting Developmental and youth mental health research Thursday 7 April 2011 http://www.mhrn.info/data/files/EVENTS/2011_Meeting_final_programme.pdf
    Google “bodily distress syndrome”. Amazing, and desperate. There even appears to be a petition over PACE, now there’s a protest all can contribute, and send the signal.

  18. I realised yesterday they have toned down the heading for online article. The actual newspaper took up an entire page with the heading:

    ‘Scientists face stream of ME death threats’ and then subheading:

    ‘Assaults, hatemail and knife attacks are the daily fear of researchers into chronic fatigue’

    And this is our quality, leftwing press.

    The Fox comment is chilling in its absolute lack of irony. What harms society is this clique of researchers flatly refusing to let go of their entirely flawed model of a neurological illness. They have nothing new to offer PWME. Nothing. PACE was a resounding failure – lambasted left, right and centre. They can’t handle that, and they can’t handle the ever mounting biomedical research in our favour so they go on the attack.

    They clearly have no idea how much biased articles like this can harm a population with neuroimmune illness and they clearly don’t care. The contempt they hold for PWME is palpable. I just can’t see that it is ethical to smear patients like this. A tiny, tiny minority have delivered threats, that does not warrant this ramped up, hysterical reporting that has been going on for almost four weeks.

    Just a shame we don’t have robust PR to launch our own attack.

  19. What beats me if why no one has followed up this comment that, “According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.”

    Which police? When? Based on what evidence?

    Is there anyone we can ask?

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