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FINE Trial: Pragmatic Rehabilitation Presentation (initial presentation to patients)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 18, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Pragmatic Rehabilitation was assessed in the UK£1.3m FINE Trial. It is similar to CBT and GET and a previous trial of it (Powell et al., 2001) has been used in reviews of GET and CBT for CFS (as evidence of their efficacy).

    I have just come across the following:

    "Pragmatic Rehabilitation Presentation" (initial presentation to patients)



    http://www.fine-trial.net/downloads/CFS patient presentation.pdf


    ---

    Note: I have also just set up a thread: "FINE Trial: Pragmatic Rehabilitation manual" http://forums.phoenixrising.me/index.php?threads/fine-trial-pragmatic-rehabilitation-manual.21415/ .

    I thought it would be easier to have separate threads given there is a good chance people will start discussing the contents as it might get confusing with the page numbers, etc.
     
  2. Simon

    Simon

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    Just flicked through this and was surprised by so many strong assertions that, I suspect, are not backed up by robust evidence (no references cited in this presentation). In particular, the claim that 'There is No Disease' is a bit strong. Especially for a trial that found no change in the primary outcomes of fatigue and physical function compared with 'GP treatment as usual'

    A couple of quotes below:

    page 11
    Final slide:
     
    Dolphin likes this.
  3. Sam Carter

    Sam Carter Guest

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    Gawd, it's like joining a cult!

    The presentation appears to be dated 22/07/04 (ie. well before the trial reported) and I do just wonder how much the gung-ho enthusiasm on show here later contributed to the attitude that "The bastards don't want to get better" when pragmatic rehabilitation abjectly failed to "reverse" CFS.
     
    Ritto, Purple, MishMash and 3 others like this.
  4. Sean

    Sean Senior Member

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    I swear, by the time I got to

    ...it is reversible.

    I was thinking exactly that!

    And then these claims came up
    • There is no disease
    • Go for 100% recovery.
    100% recovery, huh? What was the actual results of FINE? No statistically significant effect overall? That extraordinary gap between their assertions and the actual reality of the outcome didn't ring any warning bells for them? Really?
    Cult is the politest possible description of their infantilising, insulting, and highly irresponsible approach. Medical science should hang its head in shame for allowing them to get away with this utter shyte.
     
  5. Dolphin

    Dolphin Senior Member

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    Orla did a detailed thread http://forums.phoenixrising.me/inde...f-cfs-clinic-patient-handout.3066/#post-71339 on the manual used for the Powell et al. (2001) trial and the Liverpool service. Here's an extract from the thread on recovery:
     
  6. Valentijn

    Valentijn Activity Level: 3

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    Another brilliant group that obviously didn't bother to talk to patients. My sleeping problems started about 6 months after all the other crap, and resolving sleeping problems has had 0 effect on other symptoms, aside from making me less grouchy!
     
  7. Sparrow

    Sparrow Senior Member

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    I can see why from the outside it might seem like a plausible theory.

    But it doesn't fit what happened to me.

    I wish these kinds of folks would talk to more of us with the illness before deciding on their theories.
     
    Sean, Svenja, Simon and 1 other person like this.
  8. peggy-sue

    peggy-sue

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    Ah well, I'm ok according to this. I don't know about the rest of you, but I do not have "powerhouses".
    I have mitichondria and they're not doing their job properly.

    And where, might I ask, is the "body clock" situated? Have they evidence that it
    a) exists
    b) has "lost control"
     
  9. Valentijn

    Valentijn Activity Level: 3

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    Psst. Wanna buy some body clocks? I gots me some genuine Rolex body clocks, on sale just for you! ;)
     
  10. seanpaul

    seanpaul

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    To use s phrase from Dr Crawely when she talked about the WPI clinic -- "whats it all about....its all about money"

    who gets the Money, the FINE Trial Group, Liverpool, Manchester and so on, who gets promoted, Chew-Graham, Peters, Salmon. Who gets the money, the schools they work for.

    Who approves these studies in the MRC - those who already get the money and dont mind sharing it with their friends.
     
    biophile and peggy-sue like this.
  11. Research 1st

    Research 1st

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    FINE & PACE for curing 'CFS/ME' = A pragmatic approach for professional idiocy.
     

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