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"Message to Planet PACE" (December 13, 2015) by mrspoonseeker

Discussion in 'General ME/CFS News' started by Dolphin, Dec 13, 2015.

  1. Dolphin

    Dolphin Senior Member

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  2. Sasha

    Sasha Fine, thank you

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    Very well written. :thumbsup:
     
  3. anciendaze

    anciendaze Senior Member

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    One tiny matter that the above letter does not address deals directly with the paper on economic benefits and the effect on public spending. This was the ostensible official reason for funding the research.

    Those with long memories who read papers in detail will recall that presumed economic benefits were based on the assumption that the gains claimed in the original paper would be sustained indefinitely, even if the highly-trained professionals who ran the study were replaced with "less senior doctors" costing only half as much. We now have final results showing absolutely no long-term differences between different arms of the study using the senior professionals. While it is always possible "less-senior doctors" would be more effective, this exciting possibility was not pursued.

    What about other cost savings? If the study had used a true control arm without treatment, we might well have learned that NHS specialist care was worthless, with a potential for saving expenditures which benefit no patients. This kind of result was precluded by design from day one.

    Other results had shown that changing patient opinions did not result in significant changes in physical performance, employment or need for services, in direct contradiction to the fundamental assumptions about "false illness beliefs" on which the whole project was based.

    This strikes right at the root of arguments for funding this approach. It appears that accountability for public spending recommendations is interpreted in a very peculiar manner by the PACE team. While I'll admit I can't make sense of their latest twists in interpretation, these authors appear to be claiming that simply having such researchers funded, anywhere in the UK, somehow benefits CFS patients who have no contact with them. If they were talking about insurance companies wishing to deny coverage, or a government wishing to deny or delay benefits, this would make more sense, yet they specifically say they are not acting against patient interests.

    Actions, or lack of same, keep driving me back to the idea that the primary economic benefits of interest in PACE are those of the researchers themselves.
     
    Woolie, jimells, Tyto alba and 7 others like this.
  4. snowathlete

    snowathlete

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    Thanks, I think I'd missed this somehow.
     
  5. Sean

    Sean Senior Member

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    Arguably the single biggest methodological defect in a trial loaded with methodological defects.
     
  6. alex3619

    alex3619 Senior Member

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    How cost effective is a treatment that does not work? Its a white elephant, regardless of what it costs. Sadly that applies to too many other treatments for CFS and ME, but most supporting those are not claiming they have miracle cures. (There was more than a hint of sarcasm in that last sentence).
     
    Last edited: Dec 14, 2015
  7. soti

    soti Senior Member

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    This argument I find brilliant:

     
    Sidereal, Woolie, Sean and 1 other person like this.
  8. A.B.

    A.B. Senior Member

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    The idea that release of data will result in harassment could also be interpreted as PACE authors setting the stage to conflate scientific criticism resulting from independent analysis of data with harassment.

    The ICO may very well force them to release data and they know this.
     
    Woolie, SOC and worldbackwards like this.
  9. anciendaze

    anciendaze Senior Member

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    In the case of ICO decisions we are deep into U.K. internal politics. Most involved will not have an inkling about ME/CFS or any scientific argument which can be made when the authors are doing their best to obfuscate matters. This is why I continue to raise issues concerning public funds. This is near and dear to the heart of every civil servant. They spend most of their time fighting for their share of the spoils, and they are well informed on questions of accountability, even if they work to skirt the rules. (You can hardly subvert a rule if you don't know what it is.) Crying "foul" on this basis will resonate with their own ideas of unacceptable behavior vis-à-vis internecine conflict with other parts of government. The reality of life inside such organizations is pretty close to Hobbes' bellum omnium contra omnes.

    Besides being a "bait-and-switch" operation in which researchers got funds by claiming to do one thing, then changed the rules after they were funded, this is a power grab by a particular faction of medical researchers with a predisposition toward psychological rationalization. Everyone who survives in a bureaucracy is acutely aware of the dangers of power grabs, especially those which result in a public stink.
     

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