Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New CBT and GET threat for Aust CFS patients

Discussion in 'Action Alerts and Advocacy' started by RustyJ, Mar 31, 2016.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Great article on Prof Lloyd's new push to treat ME and CFS patients with CBT and GET in Australia. Lloyd was arguably the foremost ME/CFS biomedical researcher in Australia, but I guess the funding dried up. He is fast becoming Australia's Simon Wessely, as he has the Aust govt's ear and is likely to swallow up any available funding, if it becomes available.

    Note, this article refers to the new study to develop protocols for online implementation of CBT and GET at the University of NSW.

    http://www.shoutoutaboutme.com/advocacy/new-cbt-and-get-threat-for-aust-cfs-patients/
     
  2. halcyon

    halcyon Senior Member

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    :vomit:

    Where has Sonya Marshall-Gradisnik been getting all her funding?
     
  3. alex3619

    alex3619 Senior Member

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    There is another thread on this, or closely related information on the trial itself.

    Most of the NCNED funding is private, and the government funding is Queensland government, not federal.
     
    Mel9 likes this.
  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    More on lack of Australian federal funding here
     
  5. BurnA

    BurnA Senior Member

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    How can a doctor switch from biomedical to CBT / GET. ?

    Makes no sense.
     
  6. Chrisb

    Chrisb Senior Member

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    Mel9 likes this.
  7. lnester7

    lnester7 Seven

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    USA
     
  8. Old Bones

    Old Bones Senior Member

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    Even worse, in my local ME community in the early 1990's it was quite a scandal when an internal medicine specialist "traded sides". He went from supporting his patients in getting disability benefits, and providing seminars to other medical practitioners and the general public, to working directly for the insurance industry. In doing so, he was responsible for at least some of his previous patients losing their income.
     
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  9. Chrisb

    Chrisb Senior Member

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    "First cause no harm." ?
     
    Kati likes this.
  10. Large Donner

    Large Donner Senior Member

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    This car is reasonably safe....

    This drinking water is reasonably clean...

    This electrician is reasonably qualified.....

    This house is reasonably water proof.....
     
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  11. Sean

    Sean Senior Member

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    So presumably he will accept the null result for CBT and GET in the 2.5 year follow-up paper from PACE, which over rides the previous shorter term results?
     
    Last edited: Apr 1, 2016
  12. Hip

    Hip Senior Member

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    Wasn't Andrew Lloyd always considered a signed up member of the Wessely school?

    Quoting hfme.org:

    Although it seems that Lloyd, Hickie, and Co have often vacillated from a biomedical view of ME/CFS to a psychological one: this article charts their various U-turns:
     
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  13. concepcion

    concepcion Senior Member

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    Emails sent.
     
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  14. Dolphin

    Dolphin Senior Member

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    Given that the PACE Trial is mentioned, this may not be to recommend pacing but in fact contrast pacing with graded exercise and say that graded exercise is better.
     
  15. alex3619

    alex3619 Senior Member

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    That would be yet another error of course. I know you are aware of that @Dolphin, but I thought I would remind others that the PACE trial used an Adaptive Pacing comparison group, which was a treatment protocol used nowhere else and is inconsistent with pacing.
     
  16. Sea

    Sea Senior Member

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    Can someone (with better cognitive function than I have at the moment) email the Mason Foundation and enquire how the study they are supporting (teaching doctors to manage cfs with CBT and GET) fits with their criteria for funding for research into cfs. The trustees are probably completely unaware how damaging to patients this will be. They also fund the Griffith uni research (NCNED) so I doubt they have a bent towards psychological theories.

    The null PACE follow up would probably be a good start as well as links to some of the harms of GET papers (Tom Kindlon's or ME association surveys)

    Any other suggestions or someone willing to do this?
     
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  17. Art Vandelay

    Art Vandelay Senior Member

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    With PACE looking like it will collapse imminently, no doubt we'll see vested interests like Lloyd come out of the woodwork with their own GET studies. They will need 'evidence' to lobby the authorities in order to shore up their own GET/CBT empires.
     
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  18. Cheshire

    Cheshire Senior Member

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    How the UNSW chronic fatigue syndrome studies use ‘potentially harmful’ guidelines

    https://meaustralia.wordpress.com/2...e-studies-use-potentially-harmful-guidelines/
     
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  19. simeyss

    simeyss

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    Yes, I think that is exactly what is happening here.
    The researcher has confirmed that the online course is based on their program which has treated 600 people.

    About it she said:
    "The program has shown sustained benefit with reduced fatigue and improved functional status. These outcomes have been described in a forthcoming scientific publication. Importantly, the program should not be equated with the intervention provided in the PACE trial, and did not cause sustained deterioration in any patients."

    They are working very hard to distinguish their program from PACE, whilst also building an evidence base to support it. To me, this feels like it could shape up to be PACE Mark II.
     
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  20. Sean

    Sean Senior Member

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    Run away!
    Run away!

    :whistle:
     
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