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Today's article in the Observer.........UK police and Wessely consider us 'dangerous!

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 21, 2011.

  1. Countrygirl

    Countrygirl Senior Member

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    Wessely and the police consider ME militants to be dangerous says today's Observer newspaper. Yet another attack on the patient community by the UK press


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


    Professor Simon Wessely has felt safer in Iraq than in Britain. Photograph: Laura Mtungwazi for the Observer
    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.
     
  2. Enid

    Enid Senior Member

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    No end (well there will be) to his machinations - the peculiar expression on his face speaks volumes and I'm not even a Psyche. He must be running out of "sympathetic" Papers and journalists.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    All I can say is Wow.

    :(
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Propaganda Campaign

    This really is a very cleverly done extended propaganda campaign. I suppose this would have been published earlier if not for the widespread riots. It's now been ramped up to include "violence". Very clever, and with no opposing views. Even the way the article starts is exceptionally well done --

    "Chronic fatigue syndrome researchers face death threats from militants
    Scientists are subjected to a campaign of abuse and violence
    [insert exceptionally innocent picture of "the victim"]
    Professor Simon Wessely has felt safer in Iraq than in Britain."

    Provocative words and phrases used by the journalist include:
    violence, death threats, militants, abuse, dangerous, knife, punched, attack, bombarded, hate, shot, furious attacks, stalked; extremists is repeatedly used for effect.
    I feel sorry for the patients over there.
     
  5. Enid

    Enid Senior Member

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    Clearly orchestrated - not someone one would trust with anything let alone one's health.A member of his profession once called me "the worst" for not accepting his diagnosis "all the mind" - abuse on the other side (to patients) is clearly part of their own tactics.
     
  6. Esther12

    Esther12 Senior Member

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    It would be nice to have a thread with all these collected together. I think someone started one, but can't find it now to update with new additions. (I might be wrong about this - it didn't turn up on a search for 'wessely'.)
     
  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    This was brought up on mecfsforums by someone from the UK.

    Was David Cameron assumed to have been threatening to kill rioters when he said:-

    "You will pay for what you have done."?

    That's the same statement that was used as a supposed death threat previously in this extensive propaganda campaign.

    Hillary Johnson just wrote another blog about this subject.
     
  8. Enid

    Enid Senior Member

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  9. Enid

    Enid Senior Member

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    Rose77 and Dainty like this.
  10. orion

    orion Senior Member

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    The disingenuous and, at times, downright dishonest debating tactics of these people is frustrating. However, in the long run, articles such as this can only help our cause. It demonstrates that our relentless campaigning (which in reality is 99% peaceful) is hurting them. I draw the line at physical violence but it's perfectly legitimate for us to be making Wessely and his followers uncomfortable.

    Bear in mind that similar articles were written about AIDS activists 25 years ago. However, history demonstrates that their tactics worked. There are now effective treatments for AIDS and the possibility that a cure will be found in a reasonable timescale.
     
  11. Esther12

    Esther12 Senior Member

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    This is true... but it needs to be recognised that there are inaccurate and dishonest claims from CFS patients attacking them too.

    It might only be a tiny minority, but because Wessely etc are operating from a position of power, they can choose to highlight any critic they want, and will then be given the benefit of the doubt about their own claim. Where as if a CFS patient were to describe the worst experience they had ever had with a doctor, this would generally just be dismissed as a meaningless anecdote.

    eg: McClure is quite right to point out the stupidity of anyone suggesting that pharmaceutical companies would want to hide a link between CFS and XMRV... but I've only seen this suggested once here, and it was a claim that got instantly shot down, so it's clearly something almost universally rejected by patients, but it's now being presented in a national newspaper as illustrative of the concerns of those with CFS.
     
  12. Enid

    Enid Senior Member

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    I think this media "campaign" is an attempt to obfuscate the real story behind ME and SW's involvement over decades in the UK - his theories now being proven wrong. Let's blame the patients/all critics (whoever)and take everyone's mind off the real thing.
     
  13. Wildcat

    Wildcat Senior Member

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    Simon Wessely appears to have stolen and paraphrased something that an ME sufferer wrote in the public sphere a couple of years ago - the ME sufferer wrote that they were safer in a war zone doing voluntary work delivering medical aid whilst healthy than in their own country a few years later whilst severely ill with ME.
     
  14. WithHope

    WithHope

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    To those people not in the UK - The Oberserver/Guardian is an extremely well read and well respected paper. Often in turn cited by other papers. For those with strong writing skills I would strongly suggest writing a good response and attempting to get it published. I would suggest not dismissing this article or taking it lightly. Academics and much of the left wing middle clases throughout the UK read this paper and will be left with the impression that ME/CFS may well be a physchological illness. The article is extremely biased and unbalanced and therefore dangerous.
     
  15. Enid

    Enid Senior Member

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    I can well believe that Wildcat - recalling an incident of seeking escape (I managed just) to escape A & E following "all in the mind" diagnosis from 3 junior Docs and their Psycho. It comes as an awful realisation that the Hospital and it's Doctors were to be avoided at all costs - unsafe. Very ill at the time. One realises just how deep the psychiatrist's theories permeate medicine.

    to Wildcat Post 13
     
  16. orion

    orion Senior Member

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    I think that illustrates my point. These people are simply not prepared to debate with us in an honest way. Another favourite Wessely straw man is his often repeated suggestion that ME patients are in some way prejudiced against mental illness.

    There is no evidence to suggest that ME patients as a whole are any more prejudiced against mental illness than society at large. The reality is that we've simply looked at the research literature, and carefully monitored our symptoms over many years, and reached a conclusion (based on the facts) that our illness is not psychological. End of story. The frustrating thing is that this point has been put to Wessely literally dozens of times over the years but he simply chooses to ignore it.

    Debating with these people is like shooting ducks at a fairground attraction. No matter how many times you win the argument, they still keep coming back with the same tired old disingenuous arguments.
     
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    It's like-there he goes again.

    from- Denigration by Design?

    http://www.godot.connectfree.co.uk/dbyd.html#3

    Tactics used by psychiatrists of the "Wessely School"
    5. Wessely patronises, denigrates and mocks patients with ME/CFS,
    thereby damaging them and their credibility in the eyes of others.

    Others would add that he plays the victim, blames the victim, and that he is now again trying to drive a wedge between advocates and shame advocates into silence.
     
  18. eric_s

    eric_s Senior Member

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    I'm really stressed and overworked at the moment, so i will leave aside the diplomacy for once. I don't mean to offend any UK citizens or residents, so take my appologies in advance. Also hopefully this won't come back to bite me later.

    Wtf is going on in your country? How can it be that basically all the major media participate in such a disgusting and downright evil media campaign? How can the British people accept their media acts like this? It is so totally obvious that this is a concerted effort and thus shows that a small clique is controlling basically everything, as far as the media are concerned, and the shocking thing is that this goes even beyond only private media, even the BBC seems to be involved. How can it be the Brits accept such conditions?

    Yes, there may have been some death threats (i didn't read this article and don't plan to do so, but i can guess the content more or less, it's probably a repeat of the same old rubbish), but can't people see the real point, the real crime? That probably around 100'000 residents of the UK are ill without real help and are subjected to neglect or even abuse? That this generates huge costs to the economy and even larger damage to the health and lifes of the people affected? How come readers are not disgusted by this perversion to portray ill people without help and in many cases without much hope as the perpetrators??? It's just unbelievable. I'm not aware of any other countries where there are such articles. Don't people have compassion?

    Maybe you should ask the French to send you a shipload of guillotines :D Again, the same question arises. Where are the UK's patient organisations? I really think in one way or the other you have to make a strong statement now, that the reality is different than what is said in these articles, that there are 100'000 Brits who are ill and finally need recognition and help and that you call this for what it is, a media campaign, which must stop and should be investigated, who is behind it and for what reason. The public should hear the position of the people who have this disease. It can't be that the public will take this as the truth. In the absence of having good enough connections to the media or politics, i only see how some sort of demonstration could achieve this goal. Or a really big petition, but then, in the end the public and politicians must learn about it, if this doesn't happen, it doesn't help much, i guess.
     
  19. Min

    Min Senior Member

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    Psychiatrist Ben Goldacre, ex colleague of Simon Wessely who owns the Bad Science forum writes for the Guardian & the Observer is it's Sunday version. The Guardian and Observer's reporting on ME has only reflected the Wessely school of thought in the last few years.

    The Guardian ran the Dr Crippen column that regularly denigrated ME and fibromyalgia sufferers.
     
    justy likes this.
  20. eric_s

    eric_s Senior Member

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    To be honest, at this moment, i'm not getting the feeling the it's the ME/CFS side that is winning in the UK. But i only hear about these articles and don't really get a picture of what's going on. And in the end any major breakthrough that happens anywhere in the world will rescue you too, so the "fight" does not have to be won in the UK.

    Edit: Oops, when i wrote this post here, it was in response to another post that i thought was posted in the meantime. But now i see that post is actually on page one of the thread, i just didn't realize i was forwarded to page one after posting the earlier post. Sorry for the confusion.
     

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