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Peter White/Barts - comments on draft NICE guidelines - insight into their views

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 15, 2009.

  1. currer

    currer Senior Member

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    Incapacity benefit used to be the basic benefit for disability that led to inability to work.

    Those with insufficient working tax credits would need to claim a means tested benefit - Incapacity benefit as it used to be.

    Only those very disabled by ME could attempt to claim the extra money provided by DLA. It is a difficult benefit to get. You would need to be pretty much housebound.

    6X more on IB than DLA sounds about right to me.
     
  2. Dolphin

    Dolphin Senior Member

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    In the AfME/AYME survey published May 2008, these were the figures:
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    That tends to suggest that Peter White's numbers might be extrapolated from a smaller study/sample?
     
  4. oceanblue

    oceanblue Senior Member

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    Thanks, that's really helpful.

    A couple of caveats:
    1. As with local groups, members of AfME and AYME are likely to be more severely affected than average
    2. 21% had onset aged 17 or under and a further 14% were aged under 25 at onset; those under 17 won't be eligible for IB having never worked, and a good proportion of those under 25 eg students might never have worked, or not worked long enough at onset to qualify for IB.

    Even so, I still think the survey results make the 6x figure unlikely.

    Also, ME is predominantly a female illness and more women than men don't work, particularly because of child care (69% in that survey were aged 40 or under at onset), which would also be expected to reduce the proportion eligilbe to IB relative to DLA.
     
  5. Dolphin

    Dolphin Senior Member

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  6. Dolphin

    Dolphin Senior Member

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    PDW & co tend to make out that if GET done the right way, aka the way they do it in Barts, it is completely safe. Thus, this tweet is interesting.

    @RichardCann76

     
  7. PhoenixDown

    PhoenixDown Senior Member

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    The last thing we need to do, is to sling their own shit back at them. You can't fight psychobabble with psychobabble.
     
  8. ukxmrv

    ukxmrv Senior Member

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    Dolphin,

    Plus the comments that appeared (I think in the Guardian) online after PACE from participants

    Barts use AFME feed to feed that propaganda that this treatment is safe when done "properly" in response to the patient surveys that show harm done.
     
  9. alex3619

    alex3619 Senior Member

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    White is staring another trial:

    http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=12053
    GETSET
    Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care

    I think this has been reported before so doesn't warrant a new thread, but this is a proposal site with details. He specifically addresses advocacy opposition to his claims.
     
  10. Dolphin

    Dolphin Senior Member

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    Peter White speaking at the Royal Society of Medicine in 2008.
    He talks about these slides at around 26:30-27:30 in his presentation: http://www.rsm.ac.uk/academ/video.php

    He has used the ME Essential slide (and probably the other slide - I have been paying less attention) in several other talks since then.

    I've copied a transcript below

    [​IMG]

    [​IMG]

    It is interesting that if he thinks ME is not incurable because of GET, why won't he publish the "recovery" outcome measure, one of the predefined secondary outcome measures, from the £5m PACE Trial.

    http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
     
    justinreilly and biophile like this.
  11. Dolphin

    Dolphin Senior Member

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    • Posted on MEA Facebook page today:
    https://www.facebook.com/permalink....comment_id=32773800&offset=0&total_comments=4
     
  12. biophile

    biophile Places I'd rather be.

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    Does this mean that Peter White has undeclared COI?

    Or is this just an example of the COI he already declared in the PACE papers?
     
  13. Dolphin

    Dolphin Senior Member

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    One could say it's already covered by the PACE Trial declarations.
    However, not every doctor who has been paid by insurance companies would make such a recommendation in with such data, I would guess.
    (also with many doctors, if they have said they have done paid work for insurance, it would only refer to seeing a patient for an appointment I would think).
    ------
    With some conflict of interest declarations, one has to quantify the money obtained. It might be interesting to see such figures for PDW over a number of years.
     
    Valentijn likes this.
  14. biophile

    biophile Places I'd rather be.

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    Valentijn and alex3619 like this.
  15. Sean

    Sean Senior Member

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    A mere Declaration of COI does not automatically mean that COIs are being kept under proper scrutiny and control.
     
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  16. biophile

    biophile Places I'd rather be.

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    Here is a blog on the paper (which is about DSM COI):

    http://www.drbriffa.com/2012/04/27/...-of-interest-make-make-bias-worse-not-better/

    I doubt the insurance industry is much better. How common is working for the insurance companies? Is it just mere coincidence that all 3 of the PACE Trial PI's have officially declared COI relating to the insurance industry?
     
  17. Dolphin

    Dolphin Senior Member

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  18. Dolphin

    Dolphin Senior Member

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    Maarten Maartensz has critiqued this here:
    http://www.maartensz.org/me/RESOURCES/SCIENCE/MM/NL100129a.htm

    It's a bit ranty perhaps so took me a few goes to finish reading it.

    But the material deserves a rant/to be criticised!
     
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  19. concepcion

    concepcion

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  20. alex3619

    alex3619 Senior Member

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    I am making many of the same points. I wish I had read this back in 2010. I do draw the line at making conclusions about others mental states, I think most of the points on irrationality can be made purely objectively. The objective evidence is enough in itself.

    However I think the discussion of medical sadism might be satirical, pointing out the failure they make in reasoning. What do others think about that?

    This piece by Maarten exemplifies what I am aiming at in section two of my book, with section one being on pseudoscience. However the following sections will be based on much broader analyses, and it will be followed by sections on possible solutions.
     
    Last edited: Jan 2, 2014
    Dolphin likes this.

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