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PACE Trial and PACE Trial Protocol

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

  1. oceanblue

    oceanblue Senior Member

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    This, from their description of APT, bothers me a lot:
    when I had pacing therapy (from one of the coauthors of the manual), there was no mention of a 70% limit: it seems a guaranteed way of making sure you don't increase what you can do overall. Or have I misunderstood something?
  2. Angela Kennedy

    Angela Kennedy *****

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    Documentation around objections to the PACE trial raised since 2004:

    http://www.theoneclickgroup.co.uk/documents/PACE/

    My summary of flaws known about at the time:

    http://www.theoneclickgroup.co.uk/documents/PACE/BREAKDOWN OF ISSUES.pdf

    Original 'PACE report' written by Jane Bryant:

    http://www.theoneclickgroup.co.uk/documents/PACE/THE PACE REPORT.pdf

    My letter to Liam Donaldson (chief medical officer at the time) is linked there also, as is a press release and other information which may be useful to people. Although these are almost historical documents- they still hold up as problems in the PACE trial today (although additional key problems have been identified since), and provide an indication of how long objections to this trial have been going on, as well as possible discrepancies in PACE's final publication of their study in the Lancet.
  3. Bob

    Bob

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    Is there any way to get access the whole paper without paying for it?
    If anyone knows, could you let me know please.
  4. Scarlett

    Scarlett

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    How bloody depressing. Not only have we got to live with the day to day struggle of living a life like swimming through treacle, but now we have to fight all over again to explain to people who have watched the telly today that this is a chronic, debilitating, neuro-endo-immune condition and not just a bad day at the office!

    I haven't been following this from the start, so forgive me if this is already accepted protocol, but it seems as though the PACE thing, the psycho lobby and the Lightning Process all release press releases to the media in a very sensationalist one-sided way. If we released a press release to the media announcing incredible breakthroughs with XMRV, presumably the governments have no way of stopping the press reporting on them? It seems as though the biomedical side is often writing letters in response to bad media rather than putting out very strong good media?

    Unfortunately I think in these days of the media-led society, lobbying governments can only take us so far, but getting the truth out in the media (for example, inthe UK, if we could find someone at the Guardian willing to dig under the cover of these new announcements a bit) will force the governments to take notice because of public opinion.

    Forgive me if this stuff is already happening.
  5. Doogle

    Doogle Senior Member

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  6. oceanblue

    oceanblue Senior Member

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    Good article from NHS Choices, a website from the NHS that actually does quite a good job of reviewing research in a balanced way

    Therapies 'moderately improve' CFS

    Which sums it up nicely, though you could argue that 3.4 point improvement on a 33-point scale etc is pretty poor. Those stark figures do show just how limited an impact the therapies have made. Given that
    and the results are so limited, you have to question the theories that CBT and GET are based on.

    I think the PACE trial has provided powerful evidence that the biopsycosocial model is deeply flawed, from the greatest promoters of this model. Nice. We should be making the most of this evidence in due course.
  7. Cort

    Cort Phoenix Rising Founder

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    I have alot to learn about the scales - just did a quick run through on the article. Starting to dig in now.
  8. Cort

    Cort Phoenix Rising Founder

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    One way to get good comments on the various articles to rise to the top is to go through them such as on the NYT and recommend them.

    Does anyone have the org responses? Have the CAA, IACFS/ME, UK groups responded?

    Does anyone have the editorial - where to from here? I can't get seem to get it..if you have it can you post it?

    Does any one have the Chalder or the other scales? It would be really useful to post them.
  9. Cort

    Cort Phoenix Rising Founder

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    From the Medscape review:

    Not sure what normal for primary outcomes is but note that 70% of the CBT group did not reach 'normal'. What is a normal Chalder scale reading (ie healthy people would have), moderately ill and severely ill Chalder scale reading?

    Note that this was the aim of the study

    YOu can come to a couple potential conclusions about this: (a)their assumption - that behavioral and cognitive factors are responsible for the symptoms and disability in this disorder is false - since their treatments had only moderate effects on CFS (and only on a subset of individuals) and/or b) they don't have particularly effective ways of addressing those factors.
  10. Dolphin

    Dolphin Senior Member

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    File with all the questionnaires, etc used

    Hi Cort and all,

    As the file is too large to upload into the library, I have uploaded a file to rapidshare.com which people can hopefully download for free http://rapidshare.com/files/448676468/11_PACE_Trial_Protocol.pdf . It does not involve torrents.

    On page 162, one can see the Chalder fatigue scale.
    It also includes the other questionnaires used.

    Bye,
    -------
    If somebody could confirm they could download it, I'd appreciate it. Thanks.
  11. Cort

    Cort Phoenix Rising Founder

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    I was able to download it. Do you know where to get the CBT and GET manuals? (phoenixcfs@gmail)
  12. Dolphin

    Dolphin Senior Member

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    Thanks Cort

    Manuals can now be downloaded from: http://www.pacetrial.org/trialinfo.html

    I've copied below some direct links.

  13. Dolphin

    Dolphin Senior Member

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    Interesting way of looking at it.
  14. Cort

    Cort Phoenix Rising Founder

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    I'm looking more and more at this and finding that the results were really very poor; there is very little indication of significant functional improvement.
  15. Dolphin

    Dolphin Senior Member

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    You or others may not know or may have forgotten: when they initially applied for funding, they had actometers at the end or at the start. Improvements on that could have carried some weight. However, then they decided to drop them. I think it was they may have heard what happened with the Prins study which was known about in 2002 - see http://www.biomedcentral.com/1471-2377/7/6/comments#280543 Or maybe the Friedberg study did it.
  16. Dolphin

    Dolphin Senior Member

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    It's free here in case anyone wants it:
    http://www.mayoclinicproceedings.com/content/77/4/371.long


    That's a 2002 paper. They published their protocol in 2007.
  17. Cort

    Cort Phoenix Rising Founder

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    I was going to ask about that. I saw that - something else to mention in the article..Thanks

  18. Cort

    Cort Phoenix Rising Founder

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    I was going to ask about that. I saw that - something else to mention in the article..Thanks

  19. Dolphin

    Dolphin Senior Member

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    Forgot to say: the participants still wore them before the trial. So there was no extra costs involved. Using 5m (US$8m) of taxpayers' money and they avoid using something which would give some hard data.
  20. Dolphin

    Dolphin Senior Member

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    6 minute walking ability test - anyone have other data from healthy controls?

    The only objective measure is the 6 minute walking ability test. Can anyone get some data from healthy controls from anywhere or normative data. One could do a t-test and compare against the results. The "best" result was 379m which doesn't seem that far - it's less than 1 lap of a 400m athletics track (it translates to an average speed of 3790m/hour - it's not saying they could do that amount of course in 1 hour).

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