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New Coyne blog: Why the scientific community needs the PACE trial data to be released

Discussion in 'General ME/CFS News' started by Sasha, Nov 11, 2015.

  1. Sasha

    Sasha Fine, thank you

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  2. A.B.

    A.B. Senior Member

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    Confirming that it is good. Coyne is pointing out how this is a landmark decision that every scientist should be concerned about.

    Also some interesting parallels to other research.
     
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  3. Simon

    Simon

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    Thanks, Sasha, you're right, it is very good. A really thoughtful piece at PLoS One
    Why the scientific community needs the PACE trial data to be released | Mind the Brain


    Not only does it say the PACE trial data should be released, but it places this in the wider context of all research data being released (PLoS, where this blog is hosted, insists that all data in papers published there must be shared).

    This is interesting too:
    He urges Queen Mary University (which is the body responsible for holding PACE data) not to appeal against the Information commissioner's ruling.
     
    Last edited: Nov 12, 2015
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  4. Esther12

    Esther12

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    Read it. It's good. Arguments in favour of release of data, and calculation of the outcomes from the trial's protocol, are overwhelming.

    Helpful being able to get quotes from people like "University of Pennsylvania bioethicist Jon Merz, an expert from who has worked internationally to train researchers and establish committees for the protection of human subjects." Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".
     
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  5. Sidereal

    Sidereal Senior Member

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  6. elliepeabody

    elliepeabody

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    It is very readable and an excellent analaysis of the significance of the ICO decision, and not only for the UK.
    There is a wider issue here too.

    The spin, manipulation of data and attempts to demonise legitimate concerns by patients should be of interest to anyone who bases healthcare decisions on data from clinical trials.
     
  7. Sean

    Sean Senior Member

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    You mean you aren't the Supreme Ruler of the Universe? o_O

    I feel betrayed. :( :aghhh:

    You're probably not even a real pink bear. :whistle:
     
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  8. SOC

    SOC

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    Say it isn't so! :nervous:
     
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  9. Bob

    Bob

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    Valentijn, Simon, Dolphin and 15 others like this.
  10. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    You got to love this guy!

    Distorted the "debate"? What debate? These authors wanted to ensure there was none at all. And what is most scary is there pretty much was none, before patients raised issues.

    Kapow!
     
    Mel9, Chrisb, Valentijn and 13 others like this.
  11. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Would like that 100 times if I could, @elliepeabody!
     
  12. SOC

    SOC

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    o_O Who knew we were this powerful? I had no idea we were "very damaging". Anyone know what we damaged? And who did it? I hope you're planning to pay for it. :p

    Seriously though, "highly organized"? Us? I'm not sure we qualify as any kind of organized compared to other advocacy groups, or even general patient organizations.

    Very vocal... well that I can see. :)

    Again with the mythical ME militants. I wish some journalist would ask these myth-spinners to point out these highly organized, very damaging people... not just one or two individuals... a group, as Horton claims........ OMG! Is he talking about us here at PR? :wide-eyed: Surely not. Vocal we may be, highly organized we are not. As for very damaging... I have yet to see any real damage... unless you count debunking CBT/GET, ME militancy, and other myths to fellow patients as damage.
     
  13. worldbackwards

    worldbackwards A unique snowflake

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    We aren't even very vocal, unless talking amongst ourselves is a crime now. That said, they'd stop that if they could.

    I think there's a notable effort in the round here to attribute their own actions (stifling debate, being a powerful lobby, manipulating evidence, whipping up a media frenzy) to us. Which is possibly the result of a coordinated campaign. Remind me who was supposed to be doing that again?

    I still think he's talking about Sasha.:)
     
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  14. SOC

    SOC

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    They certainly seem to think it is.

    I suppose it does undermine their brainwashing of patients when those patients can come to PR and hear a different perspective from that of their CBT/GET pusher.
     
  15. Sean

    Sean Senior Member

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    Projection, or what.
     
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  16. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Especially not compared to the highly organised and well funded, thoroughly legally researched appeal that Queen Mary Univ. made to try and prevent sharing of the data.
     
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  17. SOC

    SOC

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    Reminds me of that old, old semi-comedic shtick where some guy commits some crime, or does some nasty thing, and then with a wide eyes and a horrified expression points indignantly at some innocent schmuck and proclaims, "Grab him! He did it!"
     
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  18. alex3619

    alex3619 Senior Member

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    Sigh, yeah. So much is still authority driven. We have said a lot of the same things, but over the years get ignored or denigrated. Its nice to have some open academic debate on this though. It gives us traction. Its also nice having a history trail on the net showing what we have said or done. I am guessing a journo or two might want to write a new book on this in time.
     
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  19. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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  20. alex3619

    alex3619 Senior Member

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    Yes, a total failure in scientific and medical community review.
     
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