Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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"PACE Trial Participants – were they exploited?" (September 10) by Peter Kemp

Discussion in 'General ME/CFS News' started by Tom Kindlon, Sep 14, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    I find it shocking to see the 3 press releases that went out saying the improvement rate was 60% when we now know that if the 3rd primary outcome measure overall improvers had been reported at the time the figure was only 21% for the GET and 20% for CBT. The article lists lots of media coverage that then reported this figure, among other things]






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    Last edited: Sep 14, 2016
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  3. JaimeS

    JaimeS Senior Member

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  4. NL93

    NL93 Senior Member

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    Yeah wow.
    And even then the 60% claim was quite ridiculous because 45% of the SMC improved as well with their loose improvement criteria. That only leaves 15% benefit.
    And now we now it's even lower than that when following the original protocol.

    They have clearly made misleading claims and it's starting to get more and more obvious to see.
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member

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  6. Tom Kindlon

    Tom Kindlon Senior Member

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  7. JaimeS

    JaimeS Senior Member

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    Awesome work by Kemp! Thanks for sharing quotes @Tom Kindlon
     
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  8. AndyPandy

    AndyPandy Making the most of it

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    Thank you Peter Kemp.
     
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  9. loops

    loops

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    I wonder if the participants were told where their own results lay within the data.
    I had CBT at Kings I think just after the trial itself but didn't participate.
    I always wondered how my own results were quantified....Was I deemed to have been a success.?
     
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  10. NL93

    NL93 Senior Member

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    Yes, you have fully recovered
     
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  11. AndyPR

    AndyPR Cookies for Tired Sam

    I believe they have a similar way of working to Dr Nick Riviera
    upload_2016-9-15_18-7-39.jpeg
    along the lines of...if they didn't make you seriously worse, then they cured you, and if you did get worse, then you don't count. ;)
     
  12. Dolphin

    Dolphin Senior Member

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    Or you did it wrong.

    Heads they win, tails you lose.
     
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  13. PhoenixDown

    PhoenixDown Senior Member

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    The medical care only group did 10%, so only 10% of patients were better off with CBT or GET. Also "Recovered" could mean only working a few extra steps on the walking test. PACE-per-protocol.png

    .
     
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  14. Tom Kindlon

    Tom Kindlon Senior Member

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    Yes, I was aware of this but worth highlighting.
     
  15. lnester7

    lnester7 Seven

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    Yo do realized the ok was 60% vs the 73% where normal people reported being "sick" so the threshold for normal people to be sick somehow is higher than what is consider ok for us. hmmmmmmmmmmm see the sf36 table comparison.
     
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