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The PACE Trial Did Not Go Unchallenged for Five Years Margaret Williams 28th March 2016

Discussion in 'General ME/CFS News' started by lilpink, Mar 28, 2016.

  1. lilpink

    lilpink Senior Member

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    http://www.investinme.org/IIME-Newslet-1603-01.htm

    Continue reading here.
    References:
    http://www.investinme.org/IIME-Newslet-1601-01.htm
    http://www.investinme.org/IIME-Newslet-1602-01.htm
     
    Last edited by a moderator: Mar 28, 2016
    AndyPandy, mango, meadowlark and 16 others like this.
  2. Esther12

    Esther12 Senior Member

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    “How did the study go unchallenged for five years?”

    I think it was pretty clear that this meant 'from within the systems of science', as it did also talk about patients and advocates being unjustly ignored.
     
    Simon, meadowlark, beaker and 10 others like this.
  3. alex3619

    alex3619 Senior Member

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    The implied context is PACE went unchallenged by the wider scientific and medical communities. Its been a long hard road to get the scientific and medical communities to look at this. Suddenly they are realizing we were right all along.

    Many of us have been fighting PACE since long before the trial was published. More since then. The demonization of an entire disabled community has a lot to do with being ignored.

    Medicine is entrenched in argument by authority. Only a minority take the time to look at things more critically. The Evidence Based Medicine movement is also using authority far too much, and good science far too little. The medical community needs to wake up and realize its losing power by becoming disconnected from developing the tools to be critical thinkers. They probably think they are critical thinkers, all of them. Some are, a minority. The rest lack the skill set. They could learn, but first they have to realize they need to learn.
     
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  4. Chrisb

    Chrisb Senior Member

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    It seemed to be with the usage of the term "evidence based medicine" that things started to go badly wrong. The suspicion must be that this was merely "newspeak" intended to convey the opposite of reality.
     
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Great sound byte.
     
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  6. BurnA

    BurnA Senior Member

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    Wow. An no investigative journalist in the UK thinks this is worthy of a story ?
     
  7. JohnCB

    JohnCB Immoderate

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    Indeed. I remember the shock in the internet groups that I then frequented when the "study" was first announced. There was a real sense that we had been shafted by the MRC as we had understood they would be supporting much needed biological research. During a recent email tidy-up I found my own response, dated 26 July 2004, to Christine Llewellyn of the ME Association canvassing support for the PACE trial to be suspended. Needless to say I gave my support.
     
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  8. BurnA

    BurnA Senior Member

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    It makes me so sad and angry to read this. To think of all the biological research that could have been done since 2004....
    These people are the worst of the worst.
     
  9. Dolphin

    Dolphin Senior Member

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  10. Sean

    Sean Senior Member

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    Yeah, funny that. Just hilarious. :meh:
     
  11. charles shepherd

    charles shepherd Senior Member

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    The MEA organised a petition opposing the PACE trial at the very start and argued that it wasn't going to tell us anything that we didn't already know about CBT and GET and that the money would be far better spent on biomedical research into ME/CFS. I cannot now recall how many signatures we collected. If I have time later I will try and find more info - as this is now many years ago and we were not making much use of social media on the internet at the time.
     
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  12. user9876

    user9876 Senior Member

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    These days I don't think there are many UK investigative journalists.
     
  13. charles shepherd

    charles shepherd Senior Member

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    I'm afraid that is a very valid point

    Journalists of the calibre of Duncan Campbell, whom I used to regularly work with on health investigations:

    http://www.duncancampbell.org/menu/journalism/newstatesman/newstatesman-1989/pretty poison.pdf

    are no longer around in any number to do this type of work

    Today's health journalists tend to have far too many health stories pouring into their in- boxes each day and no longer have the time to carry out in-depth investigations

    Which is why they churn out spoon fed press releases a lot of the time without any critical analyse

    There are a few honourable exceptions - Matthew Hill at the BBC is one of them
     
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  14. Yogi

    Yogi Senior Member

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    It is good to see summary of all the complaints and challenges from Prof Hooper and Margaret Williams from inception to date. I was wondering where Margaret Williams was recently as she hasn't written much. It is great to see them vindicated for all their concerns.

    If anyone is in touch it with her t would be better if the links were hyper links so you can just click to go to the source.
     
  15. jimells

    jimells Senior Member

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    This is exactly why so many advocates critical of the NIH intramural study are getting a feeling of "deja vu all over again". Who has the strength and time to spend another decade fighting another crap study?
     
    TiredSam likes this.

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