The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Peter White writes to Wall Street Journal

Discussion in 'General ME/CFS News' started by Kati, Mar 24, 2016.

  1. Kati

    Kati Patient in training

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    http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440

    Public Release of CFS Data Is Limited by Privacy Rules
    The main reason we have been unable to release data to members of the public is that we don’t have the consent of the trial participants.

    March 24, 2016 3:07 p.m. ET
    0 COMMENTS
    I am writing on behalf of the principal investigators of the PACE trial of treatments for chronic fatigue syndrome, which was first published in 2011 and was the subject of “Patients, Scientists Fight Over Research-Data Access” (Personal Journal, March 8). The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients. Although data can be anonymized, this doesn’t override the need for consent and protection of the data. We have shared data from the trial with other researchers, with proper safeguards of the data mutually agreed.

    We have treated patients with CFS for more than 20 years. Many have improved with cognitive-behavioral and graded-exercise therapies. While these therapies don’t help everyone, they are the best available, with more evidence supporting their use than for any other treatment.

    Peter White

    Queen Mary University of London
     
  2. user9876

    user9876 Senior Member

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    They don't mention that they have shared with friendly academics but not those who may look too deep. They could have offered data under the same terms as they shared with those who co-developed a individual patient review protocol at Cochrane (partly funded by White).

    They also don't explain why they cannot share data but many other trials can.
     
  3. Scarecrow

    Scarecrow Revolting Peasant

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    False.

    Edited to add: And here's a link to the consent forms to prove that what Peter White claims is not true.
    https://www.whatdotheyknow.com/request/203455/response/508208/attach/3/Consent forms.pdf

    Edited to add further: Well, technically, it is true in that the consent forms do not expressly permit data to be released. But this would not be required for non-personal data anyway. The important point is that there is no clause in the consent form that prohibits the release of non-personal data.

    Edited to add yet further (and this is my last one, I promise): you'll note that there also isn't a clause about the release of personal data. That doesn't mean that personal data can be released: individuals are protected by the Data Protection Act 1998. As the DPA does not apply to non-personal data, and the consent form is 'silent', the only relevant legislation that should apply is the Freedom of Information Act.
     
    Last edited: Mar 24, 2016
  4. A.B.

    A.B. Senior Member

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    It only has to be a reasonable, credible story for the general public, so that White and colleages can continue to play the victim of unreasonably patients.
     
    Justin30, Valentijn, TiredSam and 7 others like this.
  5. user9876

    user9876 Senior Member

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    What is clear though is that QMUL's management and council have failed to put a governance process in place to check the integrity of the research that we are paying for and that they are responsible for. They are happy for their staff to continue to hide data and protocol defined results from patients and deny patients access to information to make treatment decisions. I think the issues go further than White and to questions should be asked to those running QMUL about their ethics.
     
    Valentijn, adreno, helen1 and 5 others like this.
  6. alex3619

    alex3619 Senior Member

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    I wonder what would happen if we put out a call for patients in the PACE trial to provide anonymous feedback to a team of investigators. That is, their identity would be concealed. We can ask them how they are doing now, and if they were rediagnosed or other comorbid conditions were found. We can also ask them of their current opinion on CBT or GET.
     
  7. leela

    leela Slow But Hopeful

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    Lying Liars from Lyingtown.
    Funny that they neglected to acquire this consent in the first place, and that it wasn't needed for their friendly colleagues' perusal.
     
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  8. leela

    leela Slow But Hopeful

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    This! Yes!
     
  9. *GG*

    *GG* Senior Member

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    "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way"

    So this/these geniuses didn't "blind" the data? Or just trying to us an excuse that uninformed people would not know holds no water!?

    GG
     
    JaimeS, GalaxiiGrl and Kati like this.
  10. Sasha

    Sasha Fine, thank you

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    Doesn't explain why they've dismissed the requests as "vexatious".
     
  11. Kati

    Kati Patient in training

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    This quick response by Peter White to WSJ is curious as it is published on the same day as a very bright article has been published in Stat.

    This has been a pattern of them, British Psych lobby. The minute there are good news in ME world, or threat to their credibility, then there are a few possible choices to counter attack:

    - claim death threats or scientist abuse
    - worldwide press release
    - attempt to restrict FOI law.
    - create a diversion
     
  12. energyoverload

    energyoverload Senior Member

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    Seems they are playing multiple contradictory cards. Data Protection act doesn't apply as anonymous. Moreover data was shared with Cochrane. Why could data not be shared with another researcher requesting it? Or would they have to be bum chums?
     
    Susanna D likes this.
  13. Esther12

    Esther12 Senior Member

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    So concern about patient's privacy prevented them from releasing the requested results for the outcomes laid out in the trial's protocol? What complete bullshit. It's like he's trying to construct a completely different story now that people have called him on his past bullshit.

    They've spent ages arguing that they can't release results for groups because that would require doing calculations. Now when people are asking for the data that would allow for others to calculate these results they claim "The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients."

    tbh: Great to get more comments from White. The more he says, the worse he looks.
     
  14. energyoverload

    energyoverload Senior Member

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    The lack of consent would appear to be by design - so the PACE investigators could only win whether the trial was a load of nonsense or a complete success. We can only see their opinion of the data. A lot is riding on this - I know many therapists would find reduced employment if PACE was found to be fraudulent in its conclusions. So many things being said by these investigators is contradictory it looks even more fishy.
     
  15. *GG*

    *GG* Senior Member

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    With a little research online, it's not credible! Sorry, with the Internet, just really lame:bang-head:

    GG
     
  16. Comet

    Comet I'm Not Imaginary

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    This is why I am thinking that going after the data may ultimately be futile and, more important, makes White, et al, look like the poor abused victims. How can we hit PACE hard with what we already know is so bad about the study?

    Oh, and this:
    (My bold)
    o_O :eek: :rofl:
     
    BurnA likes this.
  17. jimells

    jimells Senior Member

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    Most Wall Street Journal readers will have little time or interest in following up this story, which plays right into Peter White's hand.
     
  18. jimells

    jimells Senior Member

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    One thought that keeps me alive is my desire to see the Wesseley School held to account in a court of law. I suspect they hope to put off the day of reckoning by refusing to release the trial data. That's working so far, but it won't work forever. The conflicts of interest are too obvious and well-documented. The stench of fraud is getting stronger.

    How much longer will their insurance industry handlers protect them? Since banks and insurance companies have a habit of yanking back their umbrellas as soon as it starts raining, we might not have long to wait...
     
  19. Snow Leopard

    Snow Leopard Hibernating

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    Indeed. This is starting to not look like a coincidence!

    Also, that Stats.org article is excellent with all the graphs that clearly show what many people have been saying!
     
  20. Kati

    Kati Patient in training

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    I used to follow the media responses a lot back in 2011 when Wessely started talking about death threat. It was well orchestrated following ME ICC publication. I blogged about it. They are truly masters of running the show with the media.
     
    mango, Battery Muncher, BurnA and 2 others like this.

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