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Horrifying article in Sunday Times

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

  1. jimells

    jimells Senior Member

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    northern Maine
    This article stinks of desperation, which is a good sign that we are actually winning.

    I've certainly been called a Red, and a lot worse. Hanlon's insults mean nothing to me. I laugh at their lists. If I'm not on one, then somebody has screwed up. If I am on their lists, then so is everyone else on this forum: you're all guilty by association.

    I've been a troublemaker, off and on, since high school. I regret very much that I am too sick to make much trouble any more.
    GhostGum, Tito, elbosque and 6 others like this.
  2. lnester7

    lnester7 Seven

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    Is there as link where one can comment publicly? I want to add the proposed tests (Citokine porfile, Lymphocites subpannels, Viral reactivations, tilt table test....) and proposed end points (NK cell number and activity, Inmune abnormalies,...) (if not proposed biomarkers).
  3. MeSci

    MeSci Activity level: 6

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    That very quote sprang to my mind too. It looks as though we have gone from being ridiculed to being fought. Only a matter of time now...but how long?
    snowathlete and SilverbladeTE like this.
  4. Esther12

    Esther12 Senior Member

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    I thought I'd cross-post my old blog on Wessely's 'Personal Statement'. I think it's a couple of years old now, but it's still really relevant to Hanlon's article: http://forums.phoenixrising.me/index.php?entries/simon-wesselys-personal-story-annotated.1054/

    The formatting of it went wrong when the forum software changed. I've just had a little go at sorting things out, but there might still be some glitches in there (darn it - just checked back and for some reason lots of my quotes are split in two... they shouldn't be, so just ignore that!).
    Valentijn likes this.
  5. Bob

    Bob

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    The actual article is behind a paywall:
    http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece

    If you want to give Mr Murdoch your money, you can subscribe for £2 a week, for a minimum of one month, here:
    https://subscription.thetimes.co.uk/webjourney/webj_subscription?pc=digi_all_packs&ppc=Acquisition6
  6. sianrecovery

    sianrecovery Senior Member

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    Well, its worth as many of us as have the energy writing letters of complaint, and referencing some of the hard science emerging. Presumably The Weasel and this journalist are Groucho club buddies or something. The whole thing reminded me of Brass Eye - for anyone outside of the UK that was a satire on the media - when whatshisface started talking about only being able to find a drunk, child-molester, cat-killing ME patient to talk to, I actually began to laugh. What utterly ridiculous people. How sad they have power over anyone.
    jimells likes this.
  7. Sasha

    Sasha Fine, thank you

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    Must admit I put off reading the whole article on Sunday (bought a paper specially then couldn't bear to open it) but like you, when I read that bit I thought he'd jumped the shark. The whole thing seemed so transparently hysterical.
  8. lnester7

    lnester7 Seven

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    The way to fight back is evidence and make the writer look like an idiot so they think twice about publishing unbased articles. If you refute the main argument and ask the wiriter to please revise the document, or maybe enough letters of us poitning out the wrongnes to editor then we can start disarming this peple. We dont need to be hateful or anything but to please correct the "there are not test" to there are "known test to show abnormalies"....... We just demand acurracy is that too much to ask??!?!?!? Anybody suscribed and have the email of the editor / publisher not sure the right term????
  9. Esther12

    Esther12 Senior Member

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    I don't know how worthwhile it is writing in about. There is a danger that they will quote/edit your letter in a way which makes it seem as if it justifies their story. Who knows? It could be worth pointing out some of the problems with it.
  10. alex3619

    alex3619 Senior Member

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    This is a shock jock / trolling type of article. Highly biased with a clear agenda. After thinking about this and reading a wide range of comments on various sites, I wouldn't bother replying ... complaints are air to a shock jock. Editors love it. If you want to issue a complaint, then make it public and somewhere else. While its largely a toothless tiger, maybe formal complaints to the press council or whatever its called (brain not working, doh).

    On thinking about Simon's (W.) patients, I am reminded of my comments on quackery. Take a hundred patients. Treat them all. Ten do better. One becomes a convert and joins the cause. Claim a cure or treatment.

    Hypothetically speaking, many who Simon W. sees will not have ME but some other disorder. Some will get better on their own, some need a push. Simon convinces these to try harder, to change their attitude, and miracle of miracles, the non-ME patient improves a little. See, proof! Not so. This is anecdotal evidence of the same kind as promoted by quacks. Its sad to see this from a member of the medical profession. This is why we require clinical trials. This is why we require objective evidence in trials, not potentially highly biased subjective evidence.

    The PACE trial demonstrates in a limited way what every other trial with objective evidence shows: to the limited extent that PACE trial was objective, there was no substantive improvement in functional capacity. There was an improvement in a minority in their attitude toward their issues. It seems they conflate attitude with capacity.
    jimells, Sasha and Valentijn like this.
  11. Bob

    Bob

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    A brief reminder about the results of the the PACE Trial.

    When assessed with the only objective measure of disability, the six minute walking distance test, there was zero average improvement in patients after treatment with CBT, when compared with standard medical care. (So there was absolutely no improvement in objectively measured disability at all, after treatment with CBT.)

    Patients were left with 'severe disability', after treatment with CBT & GET, when measured objectively with the six minute walking distance test.
    This was confirmed by Dr Christopher Snell at the FDA conference. He said that the final results for the six minute walking distance test indicated 'severe disability' (He cited Weber/NYHA).

    There was no significant improvement in average hours worked, and no significant reduction in welfare benefit claims, after treatment with CBT or GET.

    At best, with the authors' preferred subjective (self-reported) measures of fatigue and disability, only approx 13% of patients experienced a minimal response to treatment with CBT or GET.
    This was confirmed by Prof Peter Rowe at the FDA conference.


    FDA video link:
    http://www.tvworldwide.com/events/f..._archive.cfm?gsid=2251&type=flv&test=0&live=0

    Watch Prof Peter Rowe at: 24.00
    Watch Dr Snell at: 71.30
  12. Bob

    Bob

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    sianrecovery and Valentijn like this.
  13. Bob

    Bob

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    PennyIA likes this.
  14. Bob

    Bob

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  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    http://www.guardian.co.uk/science/political-science/2013/may/05/prince-andrew-royal-society-row

    crony-ass, sick, inbred, greedy, vile, despicable, business-as-usual Britain! *spits*
    this is how corrupt and monstrous our "system" is, rot in hell the lot of it
    *goes and rebuilds Hadrian's Wall with lego bricks, very very slowly, 5 miles south of Liverpool, and also straight down* :p

  16. Hip

    Hip Senior Member

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  17. Hip

    Hip Senior Member

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    It should be said, though, that Hanlon is right to draw attention to the story of virologist Myra McClure. Hanlon writes:
    This was a very distasteful affair, because McClure was doing good work, good biomedical science, and in fact ultimately did everyone in the ME/CFS community a great favor by helping to bring the XMRV debacle to an end. I thought it was grossly unjust that she was subjected to threats, and was somehow caught in the crossfire.

    And Hanlon is must be commended on his appreciation that microbes likely underpin many diseases. Hanlon writes:
  18. Esther12

    Esther12 Senior Member

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    lol at the cover.

    I agree with Hip about McClure though. (Even if Hanlon got it totally wrong. She was never an ME heroine... no-one had heard of her prior to her negative study with Wessely).

    I semi-defended McClure from some of the criticism she got (and never saw any sign of a campaign of abuse and threats), but probably not enough. She did get some unfair criticism here. I think that she stumbled in to things, talking about how much Wessely was hoping XMRV was the cause of CFS, and not having any idea of the history around CFS... also, her view that XMRV was definitely not associated with CFS did not make sense while she was also saying that she thought XMRV was associated with prostate cancer. At that point in time, the evidence made that position untenable and I understand why it led some people to think that she was influenced in her assertions by prejudices about CFS. I don't remember any criticism of her after she had recognised that her positive findings for prostate cancer were a result of contamination, but most people had already decided that CFS and XMRV were unrelated by that point anyway.

    I just stumbled upon a comment of mine on one of the stories Wessely did about dangerous militants from a couple of years ago, and it fits in perfectly well with this new thread too:

    sianrecovery and Valentijn like this.
  19. Hip

    Hip Senior Member

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    Some Major Errors in Michael Hanlon's Article:

    Wrong. Wessely doesn't just say that ME is a mental illness, he also believes that ME is an illness that patients created themselves; Wessely believes that in effect, patients think themselves sick, and thus their sickness is "all in the mind".

    Wrong. Whether ME has a psychiatric component is an interesting consideration, and ME certainly involves several cognitive dysfunctions of mind, such as brain fog, nobody would argue with that. However, what makes ME patients extremely angry is not the suggestion that ME involves cognitive/mental dysfunctions, but the fact that Wessely indefatigably promulgates his worldview that these cognitive/mental dysfunctions are caused by the patients own aberrant belief system, ie, that ME patients think themselves sick, rather than there being a biological cause. Wessely thus suggests that ME patients are malingering — in essence that they fake their disease.

    Imagine how any patient would feel if their doctor told them they were faking their serious disease. Imagine how you would feel if you were sick with say multiple sclerosis or Parkinson's, and rather than helping, your doctor instead said to you: "Look, you are just faking being ill, so don't waste my time, get out of here". Go to any hospital and try saying that to a sick patient. See what response you get. It's a horrendous thing to say, right? Yet this is what ME/CFS patients have faced for decades.

    ME/CFS patients are understandably angry with the Wessely School psychiatrists, because due to the influence these psychiatrists have had on the medical profession, doctors assume ME/CFS patients are malingering, and thus just tell them: "You have somatization disorder" — the technical term that doctors use to say that you are unconsciously faking being ill.

    Wessely may not have been responsible for throwing a paralyzed child into a pool personally, but his worldview on ME/CFS — namely that ME/CFS is a brought on merely by the patient's belief system — was the likely reason the child's carers threw the paralyzed child into the pool. Due to Wessely's worldview on ME/CFS, the carers assumed the child's paralysis was due to a belief the child held, ie, that the paralysis was "all in the mind", and not caused by any biological condition. This is the fundamental danger of Wessely's pernicious worldview on ME/CFS.

    Unable to work or study for months or even years? Try decades, or a whole lifetime. Whereas some diseases are a death sentence, ME/CFS, unfortunately, is often a life sentence.

    Wrong. As everyone knows, the paper published in the journal Psychological Medicine was something of a scam, in which the Wessely School authors redefined and significantly downgraded the meaning of the word "recovery", just so they could claim that cognitive behavioural therapy and exercise therapies lead to "recovery" from ME/CFS. To my mind, this ploy is tantamount to scientific misconduct, and these sort of dishonest machinations by the Wessely School only serve to further anger ME/CFS patients.
  20. Sasha

    Sasha Fine, thank you

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    The cover is one of several photos of 'created' facsimiles of threat notes and as you can see from the reproduction of the one on this thread, they're visually rather attractive, with an artistic eye to the choice of the different typefaces and the clever placing of the patches of vibrant colour, as though the brief was given to someone who usually works on the Times's fashion or interior design pages. Again, the cluelessness about tone tells its own story about the Times's carelessness about what it prints.
    MeSci, Valentijn and ukxmrv like this.

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