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QMUL response to PACE trial FoI judgement

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 21, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    QMUL statement of PACE trial FOI judgement:

    This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community..........

    http://www.qmul.ac.uk/media/news/items/smd/179331.html
     
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  2. TigerLilea

    TigerLilea Senior Member

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    They have no intention of releasing the PACE trial data even with this judgement against them. :(
     
    Daisymay and justy like this.
  3. alex3619

    alex3619 Senior Member

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    I wonder what sanctions can be made against them if they fail to comply with the Tribunal finding, or play a game of delaying release?
     
  4. deleder2k

    deleder2k Senior Member

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    What happens if the appeal? Will the same tribunal look at the case again, or will the case "move up" in the system? Best regards from a Norwegian that have no idea how this works.
     
    Last edited: Aug 21, 2016
  5. AndyPR

    AndyPR RIP PR :'(

    From https://ico.org.uk/for-organisations/guide-to-freedom-of-information/complaints/
     
  6. AndyPR

    AndyPR RIP PR :'(

    They would need a good reason to be able to appeal, this would need to show that a law wasn't properly applied to the latest judgement. There are higher levels of tribunal, although what that practically means I have no idea tbh.
     
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  7. Kati

    Kati Patient in training

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    This is not a time to consider a response, This is when you abide by the jury decision, or appeal the appeal, or are in contempt of the law. We do not need further reasons as of why the PACE trial data must not be released. We do not need to hear further that patients are vexatious or the possibility that patients got frustrated by the tremendous injustice.

    Give us the data. Speak the language of science and face the judgement of the scientists not just the ones you hand pick, when you share your data. It should not be difficult if you stand by your science.
     
    Last edited: Aug 22, 2016
    Woolie, Dolphin, deleder2k and 18 others like this.
  8. Chrisb

    Chrisb Senior Member

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    The second paragraph of the statement appears a little disingenuous. Is the "and" to be construed conjunctively or disjunctively?

    As the data has already been shared with other "cherry picked" researchers, did those researchers satisfy both parts of these self imposed conditions or only the second? Does anyone know what the extent of the express or implied consent is to the sharing of the data?

    This seems very odd wording in circumstances where they have had advice from a QC. They have only three options; appeal, comply, or be in breach.

    They must know something we don't. One wonders what Damian Green's officials are up to this holiday.
     
    Last edited: Aug 22, 2016
    BruceInOz likes this.
  9. Gijs

    Gijs Senior Member

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    It is not complex at all! They must release the data, so simple.
     
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  10. taniaaust1

    taniaaust1

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    umm "considering an response" to all this. I have to wonder if they are considering making a few alterations here or there before complying. I think these ones thought they were invincible to people studying their misleading research. I think they thought this would all just go away for them sooner or later.

    They could of even have believed they were on paths to knighthood.
     
  11. A.B.

    A.B. Senior Member

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  12. Chrisb

    Chrisb Senior Member

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    I must admit that, with my limited intellectual resources, I am unable to comprehend why a further appeal would be considered preferable to straightforward compliance with the order, or a breach which would allow for the immediate commencement of enforcement proceedings.

    I was not aware that this was a form of performance art.
     
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  13. Wildcat

    Wildcat

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    It was not James Coyne who made the FOI which proved successful. And James Coyne is not an ME patient who is directly affected by the continuing presence of CBT/GET in treatment guidelines (the NICE Guidelines for example).

    Delaying the release of the PACE data via an Upper Tribunal Appeal is not what the majority of actual ME patients want.

    Cowboy antics are not helpful at this point.
    .
     
    Last edited: Aug 22, 2016
  14. duncan

    duncan Senior Member

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    Poor dears.

    I suspect it has been a very complex and difficult mess for them. Perhaps they are too shy to ask for some proper academic support? There is a good community college not 20 minutes away from me - perhaps I should solicit their assistance on behalf of QMUL?
     
    Esther12 likes this.
  15. Jill

    Jill Senior Member

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    I wonder if they might release the data and say that as science has moved on that its not their fault that the criteria used has changed over the time frame . Ie try to put themselves in some sort of goodl light that the science media can spin well fit them . My true thoughts are that they'll just delay, delay delay . Just like all nasty divorce cases
     
  16. user9876

    user9876 Senior Member

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    moderated with many others
    I think it is actually a simple case.

    Is the requested data PII (as in personally identifiable info) and the court ruled that it wasn't and this was despite QMUL having an 'expert' witness in this area so he failed to make a strong argument that the data could be used to trace patients.

    The concerns of patients and independent academics demonstrated there was a public interest and given that QMUL failed to demonstrate that the purpose was vexatious or aimed at doing them harm.

    Seems simple to me.
     
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  17. Mrs Sowester

    Mrs Sowester BRING BACK KINA

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    Well, honestly! What macho posturing nonsense. Bringing PACE down as swiftly as possible is vital for the future of health care for millions of pwME not to forget children with ME!
    This is not about your ego James, this is about people's lives.
     
  18. TiredSam

    TiredSam The wise nematode hibernates

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    He really needs to learn how to channel his anger constructively. I thought he was having a go at PlosOne, where so far he has achieved bugger all. On past form it's probably best if he keeps his nose out of everything else.
     
  19. A.B.

    A.B. Senior Member

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    Coyne is being sarcastic, and reminding the PACE authors that an attempt to appeal at the Upper Tribunal would only result in their humiliation.

    PS: and yes he only played a small part in the case, being just one of the academics who sided with patients, but he has promised to re-analyze Chalder's mediation analysis which allegedly proved that a change in fearful beliefs improved physical functioning.
     
    Last edited: Aug 22, 2016
  20. Valentijn

    Valentijn WE ARE KINA

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    No, without the Oxford criteria, they don't have careers. With Oxford, starting 25 years ago, they were able to prop up their ridiculous claims by heavily populating their studies with people who had mood disorders but were physically healthy.

    This can be seen in some early studies where half or more participants were concurrently being treated for psychological problems, and VO2 max scores were pretty normal at the start of CBT/GET trials. Of course, they've shifted away from objective outcomes since then :rolleyes:
     
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