The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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The PACE trial missteps on pacing and patient selection

Discussion in 'Latest ME/CFS Research' started by RogerBlack, Feb 28, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    http://journals.sagepub.com/doi/10.1177/1359105317695801

    Various criticisms, to sum up:
    APT: The patients were instructed to do 70% of their percieved energy limit, and this could have lead to the patients regressing because they were doing too little, as well as the extra time resting eating into vital tasks.
    Contrasts with energy envelope theory, 'staying within the envelope of percieved energy', and reasons this may be better, citing trials of functioning and severity.
    it's likely that SMC contained elements of pacing.
    'Discouraging patients from pacing could cause harm'.
    Case definitions matter - CBT might work on some in a loose case definition.
    'Any major chronic health condition, such as ME, can cause depressive disorder. Some investigators do not understand or appreciate this important diagnostic issue'
    'CFSness' of sample - 'only 77% had poor memory/concentration and only 84% had PEM'


    In short - there are some criticisms that I don't think have been directly published before.

    A welcome addition to the literature, from someone that's been doing interesting work for a while.

    The author is an author of https://www.ncbi.nlm.nih.gov/pubmed/10205371 back in 1999 - "Managing chronic fatigue syndrome: overview and case study."
     
  2. Dr Speedy

    Dr Speedy

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    Thx; I'm bedridden and I've got many serious problems including cognitive dysfunction but I do not suffer from poor memory/concentration ...
     
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  3. Grigor

    Grigor Senior Member

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    Amsterdam
    The more the merrier. Been quiet around PACE. It's needs to be taken down. Always good to have fellow top psychologist criticise PACE
     
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  4. Esther12

    Esther12 Senior Member

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    I thought this paper broadened criticisms of PACE in some good ways, being able to leave what I think are some of the stronger criticisms to others. I wonder how PACE will respond? I suspect that them having lost credibility in other areas will make it harder for them to respond to Jason's concerns in the way that they would have five years ago (I can't believe it's been so long since PACE came out!).

    Good to have the 70% restriction being challenged.

    I've got a half memory of a DWP document that was critical of pacing post-PACE too. A number of patients have reported being quizzed by tribunal doctors on their approaches to their illness during benefits appeal, and getting a disapproving respose if they expressed a preference for pacing over CBT/GET approaches.

    This is the conclusion:

    I wonder if, tactically, a wise retreat for the PACE researchers would be to say 'well, CBT and GET seem to be effective for our CFS patients, if you want to define CFS differently then...'

    I wouldn't really like to see them get away with that, and it would still be humiliating enough for them that I expect they'd want to avoid it if they feel they have a chance of doing so.

    Thanks a lot to Jason for another piece chipping away at the PACE ediface!
     
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  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    After almost two months of bedrest in hospital I had much less severe memory and concentration problems. Supine might mean improved blood flow to the brain, especially in patients with orthostatic intolerance. The question is what happens when a bedridden patient can mobilize and be up and about longer. Does this increase cognitive symptoms?
     
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  6. user9876

    user9876 Senior Member

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    Given what we have seen of the data I don't think they could claim that it works for 'our cfs patients'. I don't see the issues around patient selection as particularly damning in terms as the results when compared to the different expectations covered by the different treatment arms along with the subjective measurements.

    The thing about the 70% is that is reduces peoples abilities and hence a drop in the sf36 measures would be expected (if it were an interval scale and APT was neutral we would expect a 30% drop).
     
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  7. alex3619

    alex3619 Senior Member

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    I am not sure this is always the case. Yes, it has the potential to do so. Yet this will only apply to patients who are at or over their 100% safe limit before intervention. The idea of a lower limit is to give a buffer, and allow for occasional increased demand as necessities arise, which is quite often. Now given how many of us are pushing our 100% constantly, this might be an issue for some.
     
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  8. Dr Speedy

    Dr Speedy

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    PACE came out in February 2011 so 6 years ago ;-)
     
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