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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Esther12

    Esther12 Senior Member

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    18 hours? That sounds difficult to justify.
     
  2. Solstice

    Solstice Senior Member

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    Considering they happily spent 500 times that amount of money to keep their data secret their whole argument seems a bit sketchy.
     
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  3. Barry53

    Barry53 Senior Member

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    How convenient. I guess it just illustrates the problems they have with data.
     
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  4. Sean

    Sean Senior Member

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    Excuses, excuses, excuses.

    PACE is turning into one giant excuse machine.
     
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  5. RogerBlack

    RogerBlack Senior Member

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    450 pounds is (one) statutory limit, and this is rated at 25 pounds an hour. (I am unsure if this is statutory). This leads to 18 hours.
    Having said that, I don't see how any other method of data retrieval other than a particularly slow person retyping it could hit 18 hours.
     
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  6. snowathlete

    snowathlete

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    Hard to see how it could take but a fraction of those 18 hours to fulfill such a basic request.
     
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  7. Barry53

    Barry53 Senior Member

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    Depends if you want to do it or not.
     
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  8. MEMum

    MEMum Senior Member

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    I'd be happy to extract it for free.
     
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  9. Esther12

    Esther12 Senior Member

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    For some reason, I've just re-listened to the partial recording of the 2011 PACE press conference at the SMC which the Lancet put on their website. I was interested in their use of the term 'back to normal' so pulled out some quotes on that, and a couple of bits where they work to present APT as being the form of 'pacing' that patient groups want.

    http://www.thelancet.com/pb/assets/raw/Lancet/stories/audio/lancet/2011/18february.mp3

    1:50 - CFS: Fatigue "which is bad enough to prevent you from leading a normal life"

    2:25 - [patient groups] "expressed a preference for Adaptive Pacing Therapy"

    7:00 "CBT and GET are both trying to see if you can overcome the limits imposed by the illness by trying to do more"

    7:45 Committees oversaw the handling of the data - "there was a lot of independent scrutiny of the procedures of the trial, which is important because in some areas this trial will be seen as very controversial."

    11:43 "If you think about the number of people who get back to normal levels of functioning and fatigue, then you see twice as many people in the graded exercise therapy and cognitive behavioural therapy group improving and getting back to normal, compared to the other two groups."

    13:45 "The effect that we see, in terms of the improvements, was similar across all of the outcomes that we measured." - What about the trial's objective outcomes?

    14:47 - "We'd just like to acknowledge the funders.." no mention of DWP.
     
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  10. Daisymay

    Daisymay Senior Member

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    Perhaps they using an ME patient with an ME brain!
     
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  11. Dolphin

    Dolphin Senior Member

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  12. Dolphin

    Dolphin Senior Member

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    https://medium.com/@jamesheathers/i...paper-was-published-in-a-journal-2f4f339b7ddd
     
  13. lilpink

    lilpink Senior Member

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  14. Dolphin

    Dolphin Senior Member

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    I'm not sure I will read this but I thought this was interesting:
    People will recall a score of 60+ was a recovery criterion in the PACE Trial in which Trudie Chalder was a principal investigator.
     
  15. RogerBlack

    RogerBlack Senior Member

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    I've done some searching, and not quite found a nice definition in their own words concisely that CBT/GET is a psychological intervention.
    Is there a nice concise source for this that doesn't involve closely parsing the treatment guide, for example.
    Not third parties, those directly involved in promoting CBT/GET - the PACE trialists or very close allies.
     
  16. Daisymay

    Daisymay Senior Member

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    Not sure if this will do, from the original PACE paper, p3 at this link:

    http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)60096-2.pdf

    Panel 1 - treatments provided

    CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue.

    The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments.

    These experiments consisted of establishing a baseline of activity and rest and a regular sleep pattern, and then making collaboratively planned gradual increases in both physical and mental activity. Furthermore, participants were helped to address social and emotional obstacles to improvement through problem-solving. Therapy manuals were based on manuals used in previous trials.19–21 CBT was delivered mainly by clinical psychologists and nurse therapists (webappendix p 1).

    Graded exercise therapy (GET) GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity.

    These changes result in the deconditioning being maintained and an increased perception of eff ort, leading to further inactivity. The aim of treatment was to help the participant gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability.

    Therapeutic strategies consisted of establishment of a baseline of achievable exercise or physical activity, followed by a negotiated, incremental increase in the duration of time spent physically active. Target heart rate ranges were set when necessary to avoid overexertion, which eventually aimed at 30 min of light exercise five times a week.

    When this rate was achieved, the intensity and aerobic nature of the exercise was gradually increased, with participant feedback and mutual planning. The most commonly chosen exercise was walking. The therapy manual was based on that used in previous trials.22,23 GET was delivered by physiotherapists and one exercise physiologist (webappendix p 1).
     
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  17. RogerBlack

    RogerBlack Senior Member

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    This is a good start, but the emphasis on deconditioning is unfortunate for those that won't stop to think about if exercise deconditioning actually works like that.
    Thanks.
     
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  18. Dolphin

    Dolphin Senior Member

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  19. lilpink

    lilpink Senior Member

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    Very unfair. And we're all indebted.
     
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  20. JD_Lucas

    JD_Lucas

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    I'd like to make an image which highlights empirical criticism of the PACE trial.

    Would someone be able to talk me through the graph below?


    It will be designed in a similar fashion to these ME related infographics which which I've just started creating: https://twitter.com/ME_infographics

    Thanks!
     

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