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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Horrifying article in Sunday Times

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

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :lol:
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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  3. Sasha

    Sasha Fine, thank you

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    Thanks! I was wondering if I was missing a link.
     
  4. Bob

    Bob

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    I've just noticed that only part of the article has been posted on this thread. There is more after the section that's been posted on this thread. I don't have a link to the full version.
     
  5. Esther12

    Esther12 Senior Member

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  6. Bob

    Bob

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    I've spotted a rather significant contradiction here:

    But later, Wessely says:
    So, first he says that there are no complaints from his own patients, at his clinics. And then he indicates that people have real issues at his clinics when subjected to his (inappropriate) therapies. So much so that they feel threatened and resentment.

    _____________________________________________________________

    It seems that I misunderstood this bit of the article.
    Thanks to Tania for spotting my error:
    http://forums.phoenixrising.me/inde...icle-in-sunday-times.23050/page-9#post-354653
     
    Valentijn likes this.
  7. Bob

    Bob

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    And some creative license re William Reeves:
    The New York Times has a slightly different angle on what happened:
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry about that. I must have missed a bit when I copied and pasted.

    Blame my mental illness. ;)
     
    sianrecovery, Enid and Bob like this.
  9. Esther12

    Esther12 Senior Member

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    I expect that was just poor writing by Hanlon, and that the second quote was Wessely wanting to give an explanation as to why he is hated by loons on the internet that didn't make it sound as if he had done anything wrong.

    I'm not sure if it's worth going through and pulling out all the misleading parts of the article Bob - you'll be here all day!
     
  10. Bob

    Bob

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    Yes, I agree it's not worth bothering with. It is just a distraction.
     
  11. Kina

    Kina Moderation Team Lead

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    I thought Wessely didn't treat ME patients anymore so why is he even making comments about this?
     
  12. Esther12

    Esther12 Senior Member

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    I don't think this is right. His retirement from the field seems rather partial - still doing talks on CFS, publishes papers on it, etc. I'd be surprised if he had no influence behind the scenes... I think that he thought his name was more of a problem than his claims about how patients should be treated that were the problem, so he avoided being associated with certain research.
     
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  13. Kina

    Kina Moderation Team Lead

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    You are right Esther12, according to his own website:

    I noted in the article that Wessely commented that he receives no complaints from his patients but I also have never come across any of his patients on the internet saying that Wessely has actually done anything beneficial for them. He's always saying how CBT works for his patients but I don't see any anecdotal reports from patients that this is true.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hush - keep the noise down, please, Silverblade. Some of us are trying to enjoy our lives of luxurious leisure on welfare benefits.

    I've just noticed another illustration of Hanlon's poor understanding:

    "My first, rather uncharitable, thought was that for a group of people whose primary symptom is a lack of energy, the activists in the ME community seem to have the persistence and determination of Hercules himself."

    How, I wonder, does he perceive the extraordinary persistence and determination of other people with conditions that sap their strength and energy? Why does he equate physical energy with strength of mind? It suggests to me that he has had very little contact with disabled people.

    Maybe to help non-sufferers understand the anger that we feel it is necessary to use an analogy with a condition with which they are more familiar. How about this fictional situation:

    The true nature of diabetes is not yet understood. A powerful group of academics conclude that the problem is low blood sugar arising from loss in urine. They consequently prescribe a high-sugar diet for patients and use their influence to get this made official policy.

    Meanwhile, proper scientists are finding that the problem is in fact due to the body being unable to deal with sugar, and conclude that patients actually need a low-sugar diet. Their findings are published but not acted upon. Patients start finding the published papers and realise that the advice they are being given is wrong and dangerous. The complications that many are suffering - due to the incorrect advice - make many unable to work any more, but they cannot get benefits because they refuse to adhere to the official treatments.

    Does that help, Mr Hanlon?
     
  15. jimells

    jimells Senior Member

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    We don't need a motive - we're just crazy :alien:
     
  16. Esther12

    Esther12 Senior Member

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    I found one person who said they had found Wessely helpful. I'm sure that there are others too - there are anecdotes for anything with regards to health.

    No CFS patient who understands how the NHS works would bother making a complaint for anything but the most extraordinary abuses. There's no way I would bother making a complaint about psychosocial CFS quackery - that doesn't mean that I don't think it has been harmful. Far more obvious and serious problems get routinely ignored, and combined with the prejudices which surround CFS and the danger of being known as a CFS patient with a history of making official complaints about medical staff, it would take a brave soul to start making complaints about how one has been treated.

    Anyway, I think that the most serious problems with the biopsychosocial approach to CFS only tend to become apparent to patients once they start reading research papers, and realise that their treatment and the false reassurance being given to them about recovery, the role of de-conditioning, and the efficacy of treatments were not a result of honest incompetence, but a deliberate attempt to manage cognitions that is routinely applied without informed consent.
     
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  17. Bob

    Bob

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    I have come across a number of people saying that CBT has been helpful for them, including one or two who have attended Barts (or where-ever it is that the Wessely school practise), and found their approach to treatment to be credible, and useful for them personally.
     
  18. Kina

    Kina Moderation Team Lead

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    It looks to me like the King's College London clinic that Wessely is listed as a consultant treats fatigue not ME so I am sure they might get a few positive results from applying CBT. The Web pages associated with the clinic are abysmal. :(
     
  19. user9876

    user9876 Senior Member

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    You are assuming that he wants to or is even prepared to try and understand. What I find shocking is that for a science corrosponent he doesn't even attempt to tackle or understand the science. When you look at the questions he was asking people none were asking about the science or why people have methodological issues with the PACE trial but they were looking at the politics around it.

    He said to people that he already had a view and from what we have seen of his corrospondance with people he was not asking any questions to challenge that view.
     
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  20. Kina

    Kina Moderation Team Lead

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    Do you have links Bob. I am just interested in what 'helpful' means.

    CBT can be used as an helpful adjunct to many illnesses but when it is used as the sole treatment for a physical illness, then that's a problem. CBT is not a cure for anything. Looking at the King's College clinic staffing list, I see psychiatrists, CBT providers, physiotherapists. They provide CBT and GET as the main therapies and I would assume the physiotherapists are there to fix you after you lose all your false illness beliefs. How is the treatment credible when it has been debunked over and over again. The way that Wessely et al present CBT as the answer, one would think there would be thousands of positive results all over the internet, not just a smattering here and there. I have no problem with CBT being used as an adjunct therapy but not touted and offered as the only therapy for ME. Bah Humbug. The state of affairs is unacceptable -- in the press, within the NHS.
     

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