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The PACE data have been released (9 Sept 2016)

Discussion in 'General ME/CFS News' started by Sasha, Sep 9, 2016.

  1. Sasha

    Sasha Fine, thank you

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    UK
    http://www.qmul.ac.uk/media/news/items/smd/181216.html#

    Celebrate!

    We should be on our knees thanking Alem Matthees, the patient who made the Freedom of Information request and stuck through two years of appeals and nonsense from the PACE authors and Queen Mary University of London, who have covered themselves in shame over how they've handled this.
     
    Last edited: Sep 9, 2016
  2. Esther12

    Esther12 Senior Member

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    Amazing.
     
  3. charles shepherd

    charles shepherd Senior Member

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    Common sense has won the day!
     
  4. Denise

    Denise Senior Member

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  5. snowathlete

    snowathlete

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    We no longer have to take the authors word for it! We can see the truth ourselves! Big win for science.
     
    simeyss, Dolphin, Mary and 14 others like this.
  6. Esther12

    Esther12 Senior Member

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    I didn't see it either. Maybe they're preparing to post it on whatdotheyknow?

    https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part

    There's been a lack of common sense at QMUL... looks like Matthees won the day to me!
     
    picante, simeyss, Dolphin and 14 others like this.
  7. A.B.

    A.B. Senior Member

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    What does this mean for other people that have requested information?

    The statement by QMUL suggests they view this as only applying to the Matthees request. There are still other requests for data, such as the one by Tuller and colleagues, and that of Coyne. It would be good to clarify this point.
     
    taniaaust1, L'engle, simeyss and 4 others like this.
  8. Gijs

    Gijs Senior Member

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    I don't see any data? Maybe Alem will get them first.
     
    Last edited: Sep 9, 2016
  9. aimossy

    aimossy Senior Member

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    Enjoying the moment! THANK YOU ALL WHO WORKED FOR THIS! :balloons::balloons::balloons:
     
  10. trishrhymes

    trishrhymes Senior Member

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    I guess their only obligation is to release the data to Alem Matthees, and it's the middle of the night in Australia. He may not even know yet.
     
  11. Stewart

    Stewart Senior Member

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    So, true to form, QMUL have left it to the eleventh hour to declare what we all expected all along.

    Any chance that they'll now - after two and a half years - give Alem the data without further unnecessary delay? Or will they come up with some new barely plausible excuse to draw this out further ("We've hired a statistician especially to deal with your request, but I'm afraid
    it'll take us a few months at least to train him up...")?
     
    simeyss, natasa778, actup and 6 others like this.
  12. John Mac

    John Mac Senior Member

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    Didn't the Tribunal tell them they had 28 days to release the data or announce an appeal?
     
  13. adreno

    adreno PR activist

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    I can't believe it!
     
    Luther Blissett, Yogi and MEMum like this.
  14. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    So to recap about this awful Scientific Fraud episode:

    80% of UK CF patients entered into a $8 million public funded trial, with mental illness Oxford criteria CFS (F48.0), did not respond to the therapy that is currently rolled out across the UK, via the Department of Health that runs the National Health Service (NHS) in UK.

    Yet...

    The UK NHS has rubber stamped the same ineffective therapy all over the country (via their NICE Guidelines) that doesn't work: Claiming CBT/GET is ''Evidence Based'' for patients without mental illness criteria CFS (G93.3), commonly referred to in the UK as, 'CFS/ME', that is diagnosed in GP practices country wide.

    Which makes me wonder:

    Is the useless CBT/GET therapy for CFS ME, the biggest scale medical fraud ever committed in a Western democracy?
     

    Attached Files:

  15. JaimeS

    JaimeS Senior Member

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    Hard to say @Research 1st . There have been a few doozies.

    This is INCREDIBLE news!
     
  16. Yogi

    Yogi Senior Member

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    Although not a legal precedent I presume that they will now find it very difficult to use any of these bogus arguments of 1. patient confidentiality / 2. vexatious / 3. harassment / 4. no qualified statistician / 5. only to bona-fida researcher / 6. only release to health economist / 7. too prohibitive above £450 / 8. not in public interest / 9. motivated intruder / 10. unable to anonomyse data / 11. "improper motives" / 12. young male psychopaths /13. colluding with corrupt NHS staff etc blah blah against any other FOI requests.....

    ..........but you never know with Peter White and how vexatious he might be.

    Did I miss any of the excuses?

    Edit: also ME patients = tobacco co. and climate change sceptics
     
    Last edited: Sep 9, 2016
    Mel9, picante, Bob and 24 others like this.
  17. JaimeS

    JaimeS Senior Member

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    @Yogi laid out like that, it's all especially egregious. They've pulled out every stop to avoid doing this, it's madness.

    I doubt that they've given up, however. I think they can feel pretty confident that the Lancet will support them no matter how poor their data, so they can continue other, very similar trials with impunity. Even if PACE were totally discredited (er.... moreso), imply that it was only this one trial, not the thinking behind their actions that is to blame.

    -J
     
    Mel9, taniaaust1, MEMum and 6 others like this.
  18. Kati

    Kati Patient in training

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    I don't like this press release. QMUL is still protecting their assets and seem to be sending plenty of warnings.

    Statement from Queen Mary University of London (QMUL):

    Basically they say they will release the data to one person, Alem Matthees

    .

    1) Forget about the unlocked cabinet and stolen recordings.
    2) Peer review? What peer review? Were the peer reviewers bribed in any way?
    3) This tells me that QMUL will be on high alert on how this data will be interpreted, and shared. They are sending warning signal that perhaps they will use legal proceedings to protect theor assets.

    QMUL's rules:'our way or the highway' has prevented critical eyes over their data and their study conclusions. Lancet has protected them throughout. Here once more they are sending warnings, stressing 'confidentiality of data'. They are still hiding behind the concept of de-identified data to prevent the truth from coming out.

    Still trying to save face here, standing their grounds and they will continue to fight for their principles. Basically they do not like it at all that they are dealing with vexatious patients and vexatious demands, but then that idea has been squashed by the ICO tribunal. They are not raising a white flag here.
     
    Last edited: Sep 9, 2016
    Stuart, L'engle, lilpink and 18 others like this.
  19. A.B.

    A.B. Senior Member

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    @Kati I don't know the legal situation, but after thinking about it a bit I would be surprised if QMUL can set rules on how this data will be used and with whom it will be shared. My guess is that the Alem Matthees can share this data with anyone he pleases (it would be nonsensical to have a FOI law that by default doesn't actually allow sharing of the information). A tribunal has ruled that this is anonymous data so there should be no problems.

    So I think this is just posturing from QMUL, an intimidation tactic, to discourage critics and create the appearance of problems where there are none.

    What isn't clear is how this will affect the requests for data from Davis et. al. and from Coyne.
     
    picante, taniaaust1, L'engle and 21 others like this.
  20. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    CDC supporting the PACE trial ideology:

    CBT
    http://www.cdc.gov/cfs/management/quality-of-life.html
    GET
    http://www.cdc.gov/cfs/management/managing-activities.html

    See how absurd this whole situation is? What an absolute disgrace this is. Lying to patients, and claiming CBT GET works, with no objective scientific measures to back up your claim.

    The above is a direct replica of the mindset of the PACE trial. ME CFS symptoms are not associated to by a ''push crash cycle'' (Idea propagated by Wessely School). Yet more BS from the CDC copying the British ME denial lobby, who make claims, with No Objective Scientific Measures = Not Science.
     
    Stuart, L'engle, Webdog and 3 others like this.

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