A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Information Commissioner's Office orders release of PACE trial data

Discussion in 'General ME/CFS News' started by Sasha, Nov 6, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Joh, JaneH, Jennifer J and 40 others like this.
  2. Sidereal

    Sidereal Senior Member

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    Shocking victory for #opendata and justice in general.
     
  3. Sasha

    Sasha Fine, thank you

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    Queen Mary University of London sound positively deranged in how they've approached this. Just extraordinary.
     
    Izola, Woolie, catly and 13 others like this.
  4. Valentijn

    Valentijn Senior Member

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    Yeah, most of their claims are pretty far-fetched, bordering on paranoid. There's no way that any patient is going to be identified out of the 640 participants, based on the scores being requested. And I'm still not sure why they think it's dangerous to risk a patient recognizing his or her own data.
     
    Joh, Izola, Battery Muncher and 18 others like this.
  5. Denise

    Denise Senior Member

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    @Sasha thanks very much for letting us know about this.


    Fingers crossed we get to see the actual data now!
     
    Woolie, catly, MeSci and 4 others like this.
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Wessely
    #discredited
    #disgraced
     
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  7. A.B.

    A.B. Senior Member

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    [​IMG]
     

    Attached Files:

    Last edited: Nov 6, 2015
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  8. leela

    leela Slow But Hopeful

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    Not to mention if their treatments were so great, why would recovered or recovering patients leave the study in droves just from reading the actual data? Which would you rely on when choosing your treatment protocol: your direct experience, or published datasets?
     
    Woolie, catly, SOC and 5 others like this.
  9. Cheshire

    Cheshire Senior Member

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    They seemed less worried to cause anxiety to these patients with headlines like the Telegraph's, generated by their double-talk and insinuations.

    http://www.meaction.net/wp-content/uploads/2015/05/fs_50565190.pdf
     
    beaker, green_monster, Sea and 18 others like this.
  10. jimells

    jimells Senior Member

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    The news just keeps getting better and better.
     
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  11. cornwall13

    cornwall13

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    Chances are they will appeal, but do you think their appeal will be successful?? What would be the time scales for this?
     
  12. jimells

    jimells Senior Member

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    They certainly have plenty to be worried about. Maybe they should try CBT to cure their false anxiety beliefs.
     
    Kdubz, Mel9, green_monster and 9 others like this.
  13. jimells

    jimells Senior Member

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    They are going down whether the data is released or not. They might want to save their pennies for defense counsel rather than spending them on ICO appeals.

    I find it amusing that these powerful and well-connected people are so afraid of a bunch of patients that can barely get to the toilet.

    Perhaps they are not quite as powerful and well-connected as they think they are.
     
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  14. Esther12

    Esther12 Senior Member

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    Seems very likely that they will appeal, and try to use legitimate patient concerns about the PACE trial as evidence that we're dangerous and anti-science. At this point it wouldn't surprise me if they used the titanic image to claim we're planning sabotage and terrorism. Their arguments were very weak, but they do have authority and influence behind them - they could win it just on that.
     
    Last edited: Nov 6, 2015
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  15. waiting

    waiting Senior Member

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    And how does it feel to have YOUR integrity questioned?
     
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  16. Yogi

    Yogi Senior Member

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    Excellent news.

    They really are good at making fictitious and bogus arguments about their concerns for patients when they have been harming patients with the media misrepresentations over the last few weeks and with their treatments.

    "If the participants were to be identified as either suffering from CFS/ME or having taken part in the trial, it would cause them damage and distress."


    They could still go to court to appeal I understand. I know their allegations were just fiction but lets just be careful what is said here.
     
  17. Sasha

    Sasha Fine, thank you

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    Their arguments are ridiculous - you can't identify people from a bunch of scores that don't include things such as sex, age or location. The eyes of the public are on PACE now - I don't think they're going to get away with making such a stupid argument.
     
    Woolie, green_monster, catly and 12 others like this.
  18. Valentijn

    Valentijn Senior Member

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    Yeah, the data isn't out yet, and they'll be desperate for proof of our supposed ill-behavior or ill-intent.

    And as always, we aren't allowed to be angry about injustices (because hey, we're just "those" patients), and need to stay calm and polite, even when ridiculous and defamatory things are being said about us. Fortunately we've already had a lot of practice at doing exactly that :rolleyes:

    Plus it's more fun watching respected scientists, doctors, and journalists get angry on our behalf now :D It makes for a very nice change, and far less exhausting!
     
    Joh, Izola, Kdubz and 29 others like this.
  19. A.B.

    A.B. Senior Member

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    The last weeks were exhausting due to all the exciting stuff happening. So good and exciting, but also exhausting.
     
  20. leela

    leela Slow But Hopeful

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    I love how they, who are backed by a professional PR team, keep painting us as a highly organised activist organization. While, yes, it is true, thanks to Tom and Jen and many others, the patient community *is* becoming more active and vocal, and actually being *heard* for the first time maybe ever.

    However, they are paying a team of spin doctors, while patients are exhausting themselves analysing their crap science, pointing it out, and then being described as doing harm to our own by shining a light on their shenanigans.

    This is very foolish and it is becoming clearer every day who is doing the harm.

    I can't imagine how it must feel to put saving face before the well-being of millions of people. I understand they feel their careers and reputations are at stake; have they thought about how all of us lost such things and more, long ago, to this illness?
     
    Joh, Izola, Kdubz and 16 others like this.

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