International ME/CFS and FM Awareness Day is May 12: The World Will Know
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
Discuss the article on the Forums.

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

    Messages:
    1,377
    Likes:
    815
    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

    Messages:
    8,292
    Likes:
    14,559
    In the AfME/AYME survey published May 2008, these were the figures:
     
  3. Snow Leopard

    Snow Leopard Melting in the Heat!

    Messages:
    3,432
    Likes:
    5,359
    Australia
    That tends to suggest that Peter White's numbers might be extrapolated from a smaller study/sample?
     
  4. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    350
    UK
    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

    Messages:
    8,292
    Likes:
    14,559
  6. Dolphin

    Dolphin Senior Member

    Messages:
    8,292
    Likes:
    14,559
    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

    Messages:
    281
    Likes:
    303
    UK
    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

    Messages:
    3,905
    Likes:
    2,963
    London
    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

    Messages:
    10,171
    Likes:
    21,692
    Logan, Queensland, Australia
    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

    Messages:
    8,292
    Likes:
    14,559
    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

    Messages:
    8,292
    Likes:
    14,559
    • 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.

    Messages:
    1,520
    Likes:
    12,334
    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

    Messages:
    8,292
    Likes:
    14,559
    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.

    Messages:
    1,520
    Likes:
    12,334
    Valentijn and alex3619 like this.
  15. Sean

    Sean Senior Member

    Messages:
    2,228
    Likes:
    8,703
    A mere Declaration of COI does not automatically mean that COIs are being kept under proper scrutiny and control.
     
    Dolphin, biophile and Valentijn like this.
  16. biophile

    biophile Places I'd rather be.

    Messages:
    1,520
    Likes:
    12,334
    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

    Messages:
    8,292
    Likes:
    14,559
  18. Dolphin

    Dolphin Senior Member

    Messages:
    8,292
    Likes:
    14,559
    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!
     
    justinreilly and alex3619 like this.
  19. concepcion

    concepcion

    Messages:
    67
    Likes:
    48
  20. alex3619

    alex3619 Senior Member

    Messages:
    10,171
    Likes:
    21,692
    Logan, Queensland, Australia
    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.

See more popular forum discussions.

Share This Page