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"Patients' power and PACE" (Lancet editorial accompanying PACE Trial correspondence)

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 16, 2011.

  1. OverTheHills

    OverTheHills

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    Bob
    seems like you and I are on the same page here.
    OTH
  2. Angela Kennedy

    Angela Kennedy *****

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    But really, who is 'setting out' to provoke behaviour like Horton's? No-one who wrote those unpublished letters: neither of us who made public complaints. Unless ANY adversarial action-again taken for granted in other arenas, is - unreasonably verboten for the ME community- an absurd situation.

    Plus- I think you are wrong about results. things are changing, even where the community is becoming more savvy and less cowed ,though other results are also happening.
  3. Dolphin

    Dolphin Senior Member

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    Lots of things could be done.

    I think a big problem we have is a lack of science e.g. it's not that there are lots of drugs that have been shown to be effective in various large multi-centre trials that we're not getting. And there isn't "easy" markers of severity - if the field was more developed, there would be more pressure on PACE Trial investigators and other researchers to use some sort of biomedical testing as outcome measures. As long as we're still in the era of questionnaires being used, we're "vulnerable" I think.

    So I like to see as much fundraising for research as possible. Fundraising for research doubles up as an opportunity to do other things e.g. some events may enable media coverage. Even if that doesn't happen, usually flyers are available/posters are shown. It might not be up everyone's street of course to do things like man a stand with collection boxes looking for money for research.
  4. Dolphin

    Dolphin Senior Member

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    Well said - I agree that this is useful. And I have found PR a good place to do this. Thanks folks.
  5. Dolphin

    Dolphin Senior Member

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    Yes, they are usually different pots of money: centres come from day-to-day health care expenditure which research budgets are usually separate. Although having particularly types of professionals dealing with patients can tend to influence the sort of research that might spring up with one funding source or another. So with lots of non-doctors dealing with patients, like in the UK (along with psychiatrists who often behave like "non-doctors" e.g. not into testing), non-pharmacological approaches can end up with a lot of prominence in research.
  6. Dolphin

    Dolphin Senior Member

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    I think compliance is the big issue: the ideology of GET is that patients can only really stabilise or go up in their activity levels; however, in practice that doesn't tend to happen I believe, with people cutting back when not feeling well. Which is really more like pacing.
  7. Dolphin

    Dolphin Senior Member

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    The Bulletin of the IACFS/ME have published some re-analyses of studies e.g. http://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx

    All were done by patients as far as I can see (presuming David Sampson is a patient - I'm guessing he is or has a close family member with it).
  8. Dolphin

    Dolphin Senior Member

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    Don't forget: there will be more PACE Trial papers by the authors

    I just thought I'd remind people that there will be at least one but possibly/probably several more PACE Trial papers.

    In some ways, such papers probably aren't things to look forward to; at the same time, hopefully it will give other opportunities to use the knowledge we have built up about the PACE Trial to criticise it and issues surrounding it.

    I'll also be interested to know what the recovery figures will be - I can't imagine they will look too impressive.
  9. Dolphin

    Dolphin Senior Member

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    Sounds like a good idea. Claims that GET can cause harm are regularly dismissed, often by the claim that it wasn't under a proper professional - if there were lots of cases recorded, it makes such claims [that it wasn't under a proper professional] more difficult to make/they might be more wary of making as it means criticising colleagues.

    A problem in general is that non-pharmacological interventions are not covered by the yellow card scheme (for reporting adverse reactions to medications).
  10. oceanblue

    oceanblue Senior Member

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    The great thing about this forum is how we can be reassured by our mutual failures :D

    Yes, and I think this is an extremely important point, but
    also agreed. I'm sure the PACE authors and others will indeed devote themselves to finessing these "highly effective treatments".

    I like this idea. Though I doubt we'll ever get access to the raw data, a published critique is still possilbe. However, given the problems with how patients have now been portrayed I think it would need to come from an academic with credibility in the field, even if patients were involved too. There would be some merit in doing this even without an academic, but I don't think it would have anything like the same impact.
  11. Dolphin

    Dolphin Senior Member

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    Doesn't look like Richard Horton's views have changed
  12. ukxmrv

    ukxmrv Senior Member

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    Where's the "unlike" button again?!

    Sorry Dolphin - don't mean you. Just the content.
    Bob and Kati like this.

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