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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Queen Mary's appeal ICO decision on PACE data

Discussion in 'General ME/CFS News' started by worldbackwards, Nov 26, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

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    *groan*
    https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-64718

    Comment from James Coyne:


    I'm surprised, I really bought his line that they wouldn't take this on - he seemed very sure of himself. I wonder if he underestimated how far the medical establishment was prepared to go to avoid this issue (far further than on most things).
     
    beaker, CantThink, catly and 13 others like this.
  2. Scarecrow

    Scarecrow Revolting Peasant

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    How bad must that data set be for the investigators? It looks very much like they can't afford for it to be made public. Too much to lose.
     
    beaker, CantThink, catly and 29 others like this.
  3. user9876

    user9876 Senior Member

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    I think they will try to delay as long as possible. They will at least want breathing space between Tuller's and the next lot of exposure.

    The question to QMUL should be what governance are they placing on the project since as an institution they are responsible and whilst it is White refusing to release the data it is QMUL as an institution who are ultimately responsible.
     
    jimells, MEMum, taniaaust1 and 11 others like this.
  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    As I have noted, the British Establishment, of which the B.M.A. and lots of other groups and such are part of, have been involved in, covered up, ignored every kind of abomination under the Sun
    From the mass rape of children, to the forcible psychiatric incarceration of perfectly sane people who have illnesses the vermin refuse to accept including M.E.
    Hiding nuclear poisoning/exposures and results of atom bomb tests
    Covering up the use of toxic drugs that politicians etc were making nice kick backs from
    mass murdering psychopaths exterminating hundreds of patients
    etc etc

    They'd sooner let patients die than EVER admit they, the "Lords of Health and Masters of All they Survey", were wrong
     
    jimells, Battery Muncher and leela like this.
  5. Sasha

    Sasha Fine, thank you

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    o_O

    Don't forget that there's a new petition to the US HHS that we should be all signing - it asks The Lancet to get an independent re-analysis of the data, among other things.

    We want the HHS's authority behind this - let's pressure them to pressure The Lancet.

    Sign and share!

    More than one way to skin a cat.

    http://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace
     
    green_monster, justy, beaker and 13 others like this.
  6. leela

    leela Slow But Hopeful

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    "But we need more time to adjust the data before releasing it!"

    *ETA: as infinitely grateful as I and we all are to Tuller and Coyne, they have unfortunately provided an exact roadmap of what needs to be cleaned up.

    I do not understand at all why there is even an opportunity to appeal the decision that they must make public data that was paid for by the public in the first place.

    These people and this process are making a mockery of science and medicine.
    Lie
    Lie some more via press release
    Get caught
    Shame the people who caught you and call them crazy and dangerous
    Delay
    Shame and lie some more
    Get promoted or knighted
     
    Last edited: Nov 26, 2015
  7. richio76

    richio76

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    Will this be a court appointed solicitor?
     
  8. Esther12

    Esther12 Senior Member

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    Probably worth avoiding giving QMUL any more ammunition to use against CFS patients as being too angry to be allowed to be provided with accurate information. QMUL seem happy to try to use prejudices about CFS against the person who requested this data, and the tribunal might fall for it, so any anger we express could be unreasonably used to argue against the release of information.
     
    mango, Susanna D, Sean and 8 others like this.
  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    What is the new decision making time line on this?
     
    Lyratic and Kati like this.
  10. adreno

    adreno PR activist

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    I think this is becoming embarrassing for the authors. Surely releasing the data cannot be more "vexatious" than the arduousness of having to go through trials and appeals. It sounds more and more like a bad excuse.
     
  11. worldbackwards

    worldbackwards A unique snowflake

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    Well exactly. Their position was weak in the first place to be forced to cite PR as vexatious campaigners. In the face of criticism by Coyne, Laws and other researchers it is surely untenable.

    One can only assume they genuinely fear for their careers if the data is released. Which would at least be worth the wait.
     
  12. Kati

    Kati Patient in training

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    Last edited: Nov 26, 2015
    MEMum, Ellie_Finesse, justy and 4 others like this.
  13. Aurator

    Aurator Senior Member

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    I'm mystified by this. Even if patients were angry, I fail to see how being angry can render someone unentitled to see the information requested; there seems to me to be no logical or legal connection between the two. What connection of any kind can there be between a person's supposed (and not necessarily actual) mood and their entitlement to see the data from a publicly funded trial?
     
    Bob, beaker, Sea and 15 others like this.
  14. Esther12

    Esther12 Senior Member

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    There was a tribunal decision that seemed to think that CFS patient's concerned about the PACE trial must be nasty anti-psychiatry trouble-makers (probably in posher language than that - I've not read it for a long time), and at least one ICO judgement that was based on similar prejudices. When it comes to CFS in the UK, logic isn't the driving force.
     
  15. Woolie

    Woolie Senior Member

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    So disappointed to hear this outcome, as it just prolongs the agony for everyone involved. I can't help thinking this is a bad move on QMUL's part, as it draws out the whole process, attracting greater attention to the issue. And it is surely only a matter of time before the data are released somehow.

    Stretching it out like this seems to serve no purpose than to inconvenience those who requested the data. What word do we use for that? is it, er, "vexatious"?

    I wonder what the legal and administrative costs for QMUL have been so far to defend/appeal this and the other FOI requests? Would be easily into five figures by now.
     
    Last edited: Nov 27, 2015
    MEMum, Bob, picante and 13 others like this.
  16. Sean

    Sean Senior Member

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    I wonder if Coyne realises that this goes way past just the UK medical establishment trying to cover their arses, and that most formal 'authority' in the UK has been tainted by PACE and the hollow biopsychosocial ideology behind it.

    If PACE and its cognitive-behavioiural model goes down, then there are serious and widespread implications for a whole lot of other people and processes and institutions.
     
  17. Kati

    Kati Patient in training

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    One can always file a freedom of information request for that. We know how to play the game. :rolleyes:
     
    beaker, picante, CantThink and 2 others like this.
  18. Hip

    Hip Senior Member

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    Cognitive behavioral therapy won't go down, because it has some efficacy for anxiety disorders such as OCD.

    It just does not seem to work for ME/CFS, that's all.
     
    picante and panckage like this.
  19. Sean

    Sean Senior Member

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    Understand. I meant only as it applies to ME/CFS.
     
    MeSci likes this.
  20. Kati

    Kati Patient in training

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    The thing is, I think that even anxiety and OCD will end up having biological causes which can be treated medically in the future. You just wait.
     
    Bob, beaker, picante and 16 others like this.

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