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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Wessely will go down in history as another Lysenko, and his supporters names will be mud

    http://en.wikipedia.org/wiki/Lysenkoism
    and it's NOT just M.E. patients who hate his guts, far from it, whole bunch of folk loathe him.
    snowathlete, MeSci and sianrecovery like this.
  2. Bob

    Bob

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    Prof Stephen Holgate must have put an enormous amount of effort into setting up the new UK research collaborative, which is designed to encourage new biomedical research into ME. Holgate specifically stated that he wants new researchers, from other fields (e.g. immunology, virology, genetics etc), to enter the field of ME. The timing and nature of this article must surely be seen as profoundly unhelpful in terms of bringing in new talent. It must be deeply demoralising and antagonistic for people like Prof Stephen Holgate. Holgate seems to be influential, and has absolutely transformed the MRC's funding approach to ME over the past couple of years. I suspect that Holgate, and his colleagues, are not very happy about this article, and I hope that they see it for what it is. I can't help feeling that this article is so desperate, and so unbalanced, that people in authority will now begin to see the psychiatric lobby from the ME patients' point of view (i.e. that they are more interested in their own power base than anything else.)
  3. Hip

    Hip Senior Member

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    I can't see that there is a major problem in creating a visually attractive facsimiles of the original threat notes, provided the wording is accurate. Everything is stylized in magazines these days. For me it was interesting to read the wording, just to get an idea of what type of threats Wessely and Co have received.

    It would have been interesting to see the list of names of the ME/CFS activists mentioned in the article, that Hanlon was privy to. Hanlon said these activists appear on various ME/CFS forums, and on Facebook, and said activists are divided into three categories: militant, radical and active.
  4. sianrecovery

    sianrecovery Senior Member

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    I think its worth writing in myself. I also think its worth trying to get the Times to do an 'other side of the coin' article, and if I can get access to someone in their chair of command (long shot) I am tempted to ask them. And who would be willing to speak to them? And which organisations would you involve?
    Valentijn and lnester7 like this.
  5. Esther12

    Esther12 Senior Member

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    I expect that anyone could take the most aggressive things that have been said to them over the years, remove the context, and then illustrate them with ransom-note cut-out letters to create a visceral image of harassment.

    The context for Crawley's death threat makes it seem pretty timid by internet standards.

    The only other threat we've had evidence of was a Wessely e-mail that included that lyrics of an angry Bob Dylan song. When moments of social discomfort are being presented as signs of how serious the harassment is, it does make me think that they're making a fuss about nothing:



    I wonder if there's a class/social status thing at play here. If one were to spend time in certain pubs, or with certain people, death threats are a normal part of conversation. On the internet, death threats are routinely made against reality TV stars for being a bit irritating. On this forum I got some very aggressive and weird PMs from someone who thought I was an under-cover psychiatrist. On a music forum I remember a very brutal and over-the-top death threat for not liking a particular (rubbish) album. It's just a normal and uninteresting part of life that can be used by those hungry for publicity or sympathy (reality TV stars).

    That's not to say that I think that there's nothing wrong with anything that CFS patients do, just that any large group of people who has been mistreated is going to have some who react less well than others, and that this is not terribly interesting. With CFS advocacy, I think that there has been a problem with people being too trusting, and not putting in enough effort in to taking the time to look critically at the evidence - but this seems to be a pretty common problem too.

    That did seem very weird. Especially the classifications, which make it clear that they are following people who have not done anything wrong. I wonder if publicising the keeping of lists of people is intended to put anyone off from becoming 'active'? I wonder what other activists have lists like these kept about them.
    MeSci, biophile and Valentijn like this.
  6. user9876

    user9876 Senior Member

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    My impression was that the cover quote was a mix of the various quotes within the article rather than one in its own right - in which case it is very misleading. Also depending on the form of the threats take laying it out as a ransom note makes it look more sinister.

    He doesn't say who maintains the list. If Wessely does as part of his job at kings then persumably it fits under the catagory of crime prevention within the register of data controllers. But given the lack of prosecutions I think it would be hard to argue that a list of activists really forms any part of a crime prevention strategy. I would have also thought it was a breach of individuals privacy rights to have that information disclosed to a journalist. Information does of course have to be accurate and since names aren't given on forums this could be quite hard.


    The worrying thing is what other things they might use a list for. For example, if it is distributed to doctors treating people with ME does that affect their treatment. A few years ago the construction industry got into trouble for maintaining blacklists.

    http://www.ico.org.uk/ESDWebPages/DoSearch.asp?reg=5871745
    MeSci likes this.
  7. Hip

    Hip Senior Member

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    I imagine that the police would have complied such a list. This is just modern police work, which these days has a high emphasis on surveillance and information gathering, even before any illegal activity has taken place. It's an intelligent and effective approach, no doubt.

    Anyone ever watch the BBC TV series "Life on Mars", which was a great cop drama, but also a wonderful study on the way policing methods (and society in general) have changed over the decades.
  8. Esther12

    Esther12 Senior Member

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    Possibly. I'd be pretty surprised if the police spent their time compiling lists of people who are active on forums linked to militants who might send an angry letter. That level of surveillance would seem to require lists being kept of just about anyone who uses the internet. It would also seem pretty dodgy for them to then be sending these lists of names to Wessely to share with a reporter!

    If gay-rights 'activists' were being treated in this way I think that people would be concerned.
    taniaaust1 and Valentijn like this.
  9. Sam Carter

    Sam Carter Guest

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    Hanlon gives the impression that the list of activists was drawn up by the Met, but it clearly wasn't otherwise why write "it is at the disposal of the authorities" if it was the authorities themselves who compiled it?

    This is from the minutes of the PACE Trial Steering Committee 27/09/2004:

    """"
    ...
    The question was asked as to how to deal with any emails or hateful correspondence received. It was agreed that these should not be directly responded to, but should be retained as evidence for the future should it be needed. Chris Clark urged a note of caution that nothing negative should be written or emailed about the lobbyists as this could be libellous.
    ...

    ACTION 45: Any lobbyist mail to be forwarded to Julia DeCesare for storage.

    """" (Emphasis NOT added!)
    MeSci likes this.
  10. Hip

    Hip Senior Member

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    Good point. So perhaps it is the people who received the threats who compiled the list.
  11. Esther12

    Esther12 Senior Member

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    Oh yeah.

    My dirty washing is at the disposal of the authorities, that doesn't mean that they have any interest in it.
    Valentijn likes this.
  12. nora_n

    nora_n

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    I have not read through the entire thread, but simultanously there was a similar articles with similar words here in Norway, here about a LP coach, self-tilted as ME therapeut.
    Valentijn likes this.
  13. biophile

    biophile Places I'd rather be.

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    Keeping an unofficial list of identities and aliases who send clearly harassing or threatening emails is understandable. However, the wording in Hanlon's article would suggest that we should not be surprised if this list expands beyond that scope and includes anyone who is involved in strongly criticizing the flawed biopsychosocial research into ME and CFS.

    It also sounds like patient forums are being monitored (how closely?), although maybe if Hanlon kept an eye on the threads himself he could still learn a thing or two. According to the Phoenix Rising statistics, the most popular thread in the last 3 months (i.e. determined by the largest number of contributors) which was related to ME or CFS directly was the "Recovery from chronic fatigue syndrome after treatments given in the PACE trial" thread with 41 contributors who posted there. Would the list be so ridiculous as to include anyone who posts frustrated but legitimate concerns on such threads?
    MeSci, Valentijn, Bob and 1 other person like this.
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    and hey mad as I am :p I have NEVER sent anything to any of those lot
    If I have called them goat scroggling bastards, and wished them to suffer defenestration while copulating with a quisinart, etc well, hey! :p

    As said, what I really want is to see them utterly ruined, legitimately and legally. To see their names become mud, their books and theories confined to the "pseudo science and scientific embarrasments" shelf.

    Bad days, yah I do wish 'em fubared, to suffer and be damned as we have, hey I'm only Human!
    They are sly, conniving, SOB bullies, I have REAL issues with that kind of gobshyte and always have.
    Vicious in yer face sucmbags are bad enough, but the skulking weasel backstabber type, GAH!! Lower than a snake's hemorrhoids!

    IMHO some of what they are spouting is what folk have said online, as opposed to personal communication, and by that standard...go read Facebook etc...

    Love Shylock's speech, and it is very apropos for many reasons especially in this scenario.
    I wonder if Wessely has ever considered that his family's trauma had affected him, personally: epigenetics.
    Sure as hell occurs to me and about MY family and self, too.
    and I hope no one is dumb enough to think that's "anti-Semitic" cause it sure as hell isn't! sigh. Shylock's pointing out the universal truism, that we are ALL the same under the skin. He's the only honest character in the play!

    I'm nuts but at least I know I'm nuts ;)
    it still did NOT cause my M.E., no more than it would cancer or rabies or whatever
    psychological problems can lead to bad "life choices", addictions etc and thus, health problems, they do not directly cause gross health issues however. (gross = specific meaning, not "grotty" :p)
    But, personal issues that cause stress do cause issues as M.E. reacts badly to stress as do many other illnesses.
    IIRC Didn't wessely ? or was it Reeves? had to change tack after research showed their pet theory that "M.E is caused by childhood abuse" didn't pan out with the actual statistics, hm?

    So, anyway, you piss off a large group of people, who are being abused by their own healthsystems/governments, who are suffering an illness that makes them irritable, depressed etc, well what do you expect? roses?
    No! You'll get frikkin' TURDS thrown at ya! :alien:


    and this has taken me some time to write, due to typos, not being able to remember words etc etc.
    I resent wasting it on crap like that when if he had any guts AND compassion/remorse he'd publicly apologize AND explain himself.
    sianrecovery likes this.
  15. Esther12

    Esther12 Senior Member

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    How much more quacky can people get before patients are allowed to be angry with them?

    I bet that if it were 'sceptics' angry about LP quackery, that would be fine. ME patients angry about LP quackery? Militant anti-psychiatry.

    Pointing out how serious the deviations from their protocol were? Recognising that the paper was classing people as having moved from 'abnormal' to fatigue and disability at the start of the trial to 'normal' fatigue and disability at the end even if their scores stayed the same, by adopting new population norms half-way through the trial? It's a co-ordinated attack upon science going on in that thread.

    Given the few poor examples of threats they seem to have and keep using, there can't be many names who actually got classed as 'militant'. That leaves 'radical' and 'active'. If those threatening and harassing messages are already classed as militant, we're already on to pretty minor offences for being classed a 'radical'. Disagreeing with Wessely? Thinking he's a quack?

    My guess...

    Radical: goes through papers, pointing out when they misrepresent the evidence.

    Active: visits a forum where people point out papers that have misrepresented the evidence.

    This post of mine is surely hovering on the edge of militancy:

    http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/

    lol at them compiling a list of 'active' activists to pass around, and ominously show to journalists. Of course Hanlon judges this to be entirely understandable given the scale and nature of the threat.
  16. Sean

    Sean Senior Member

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    Esther, the wild-eyed word-flinging revolutionary (when she feels up to it, of course).

    My kind of gal. ;) :p
  17. ukxmrv

    ukxmrv Senior Member

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    I do take some consolation from what happened to the last quack "ME" doctor that the Sunday Times championed. Dr Nixon (Charing X Hospital London).

    Front page of the main newspaper "Yuppie Flu is all in the mind says doctors"

    <snip from a commentary on this article>

    This characterisation of ME personality and lifestyle is also apparent in the theory that ME is an effect of hyperventilation, or overbreathing. In this version of the 'yuppie flu' construction, sympathy for the sufferer morphs into contempt. The theory, based on the claim that a change in breathing lowers the level of carbon dioxide in the blood, inducing malfunction in muscles and other organs, was publicised in an article on the front page of the Sunday Times (Hodgkinson, 1988); the title, predictably maddening to sufferers, was ' ‘Yuppie flu’ is all in the mind, say doctors'. The doctors concerned were cardiologists Peter Nixon and Stuart Rosen, who expounded their views in the same issue of the Sunday Times, and whose proposed method of treatment was a period of sleep induced by heavy sedation, followed by breathing retraining.

    The notion that the symptoms of ME result from hyperventilation produced by anxiety originates in the writings of McEvedy and Beard (1970b: 13). The essentials of this new version of an old idea emerge from the press report just mentioned. 'All the (ME patients) we have seen here,' explains Rosen, 'have four-star abilities with five-star ambitions. They have above-average intelligence, high levels of drive, lots of enthusiasm; but they are not quite the superman or superwoman they need to be to achieve their ambition.' A severe viral infection, he believes, can trigger the health crisis, but it is not the root cause. With the disregard for logic and coherence that characterises so many pronouncements about ME, Rosen adds that his patients have ranged from an old lady whose illness began when she was pushed out of a bus queue, to a woman who survived torture in a South American prison, but became ill when she learned that her daughter had married a fascist. How either of these cases fits the specification of five-star ambitions hampered by four-star abilities is not clear.

    Rosen's colleague, Peter Nixon, adds more soberly that 'overbreathing is a symptom of fear or panic, that can be experienced when people who demand a lot of themselves are falling short in their achievements'. A subsequent paper in the medical press, of which Rosen and Nixon are amongst the co-authors, draws analogies between alleged stages of ME and those of battle-weariness, and speculates as to whether hyperventilation due to anxiety and effort may be the natural penalty for violating the boundaries of physiological tolerance (Rosen et al. 1990: 763-764).

    In a later television interview, Hodgkinson (Frontline, Channel 4, 25 July,1993) defended his use of the term 'yuppie flu' in his Sunday Times report. He explained that yuppies in the 1980s went all out for material success, becoming ill when their goals were frustrated; they had 'one foot on the accelerator and one foot on the brake', and suffered a crisis leading to deep exhaustion and despair. As suggested above, there is an implication, albeit unstated, that ME sufferers are unpleasant, pushy people, who have got their just deserts. The preponderance of female sufferers appears to be forgotten here: it is not plausible that most of the high-powered people to whom Hodgkinson refers were women.

    <end of snip>

    and what happened to Dr Nixon. Well he was exposed for the fraud he was. But not for a long time and he damaged unknown numbers of ME patients. He tried to do this to me


    http://www.duncancampbell.org/content/preying-hope

    <snip>

    Dr Nixon has gained a high profile for his theory that a list of diseases including Aids, Gulf War Syndrome, ME and premenstrual tension are attributable to hyperventilation.

    However Channel 4 found that Dr Nixon rigged his patients' breathing tests by asking them to "breathe as if they were angry". He told lan Hughes, an Aids patient who died last summer, that his fatigue was caused by over breathing. Dr Nixon who had a turnover of more than £100,000 a year, recommends a course of Valium or diazepam and "two weeks of sleeping" as a cure for hyperventilation.

    and

    In a comprehensive climbdown, he also agreed to the disclosure of all documents in the case to the General Medical Council -unless he voluntarily retires from practice in the meantime - and agreed not to take legal action if the allegations are repeated by Channel Four, the producer and journalist Duncan Campbell, or his production company.

    END
  18. Hip

    Hip Senior Member

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    The somatization / somatoform theories that Wessely and friends have dedicated their careers to are so clearly and obviously pseudoscience. For the life of me, I cannot understand why other medical professionals don't see it, the logical foundations of these theories are so patently flawed. They are an embarrassment to science, and one giant leap backward for mankind.

    This critique of somatization / somatoform theories that someone wrote nicely sums it up:
    The amazing thing is that our intrepid journalist Michael Hanlon, who presents himself as an advocate and defender of science, has been duped by Wessely School pseudoscience. Hanlon has not yet realized that Wessely School theories are just the emperor's new clothes. The fact that these various Wessely School academics have published dozens and dozens of peer-review papers gives them apparent credence; but anyone with a decent scientific mind would will see right through their somatization / somatoform psychobabble mumbo-jumbo straight away.
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  19. alex3619

    alex3619 Senior Member

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    If they are obsessed by lists, lets start one of our own. How about a list of journalists who don't bother to do enough research to understand the topic, or whose writing is so biased as to be palpably onesided?

    I would like to nominate Michael Hanlon as the first recipient of this "award".
  20. alex3619

    alex3619 Senior Member

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    A big section at the start of my book is looking at how to define pseudoscience. If somatization etc. do not fit, they are damned close. Every major hallmark of pseudoscience is represented. The only thing that stops this from being recognized is that the medical community usually still stand behind the psych claims.

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