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Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

Discussion in 'General ME/CFS news' started by Kalliope, Feb 13, 2018.

  1. large donner

    large donner Guest

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    Ah then my previous post explains another issue, whereas her statement to you proves she is an ignoramus, no data required.
     
  2. dave30th

    dave30th Senior Member (Voting Rights)

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    The reasoning in the ICO decision about why they don't have to ask Chalder or Sharpe for help seems to be that QMUL shouldn't have to do what other institutions shouldn't have to do. In other words, another public health agency--say, the Garbage Department--shouldn't be expected to have to bring someone over from the Housing Department to answer a Garbage Dept FOI. Similarly, QMUL shouldn't have to "borrow" people from KCL (Chalder) or Oxford (Sharpe) to answer a QMUL FOI. And while it is acknowledged that QMUL would likely have other stats people who could figure it out, the Garbage Dept would not, for example, happen to have an extra stats person around to answer a FOI request, and wouldn't be able to call on one. So QMUL should not be treated differently and have to call on another stats person, unrelated to PACE, just because they happen to have other stats people around. The reasoning is obviously very unhelpful in this case, although you can see that it makes sense from a certain perspective. Whether it holds up, I guess we'll see, since John Peters says he has appealed the ICO decision.
     
  3. Allele

    Allele Senior Member (Voting Rights)

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    I don't understand. Data is data. A publicly funded trial was completed and filed.
    click, click click, send.
     
    MEMarge, ladycatlover, Sue and 9 others like this.
  4. Alvin

    Alvin Senior Member (Voting Rights)

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    But if i understand correctly what we are asking is equivalent to asking the garbage department to send us their pickup schedules, something they have on hand and is publicly financed information. Of course they would just have a pamphlet to send us and they would do it but in this case we know they are acting in bad faith, changing excuses, being caught in lies and so forth. Thats why i would be careful about falling into their trap of why it can't be done but focus on their goal of preventing the data release.

    Think of it this way, they lied and don't want to give us the evidence to prove how serious their lies are so they try to invent excuses we can't refute. They want to set the narrative and use it to defeat us. Its a form of divide and conquer.
     
    Last edited: Feb 14, 2018
  5. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    What we're asking is for the Garbage Dept to send us the data from a survey they did on what people think of their rubbish collections. Everyone who was involved in the survey has retired or moved on, and no one currently in the Garbage Dept knows how to find the results from the survey.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    If i had paid for the survey i would ask for a refund, its a waste of money to do something then have no data. Then again i don't work in government :woot:
     
    MEMarge, ladycatlover, inox and 5 others like this.
  7. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    @Alvin, yeah, but I guess the PACE authors have published, so there are results of the expenditure (albeit terrible ones).
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I emailed her a few days ago about this issue and continue to pass on any relevant info
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    So what would they do if another researcher wanted the data? (I realise this doesn't fall in the jurisdiction of the FOI, but hypothetically ).

    I still think the best course of action is to somehow lobby to get an independent reanalysis of the data and comprehensive review of the protocols.
     
  10. Adrian

    Adrian Administrator Staff Member

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    But i the Garbage Dept had a sub-department the called green bin collection and they closed then they wouldn't be able to avoid a FoI request because that part of the organisation no longer existed. They would be expected to provide the information having someone from a different dept now going through the documents. Otherwise government departments would be reorganizing as an anti-FoI strategy. Its not like they need a specialist statistician with knowledge of unusual research techniques to access the data just someone who has some basic data science skills.

    QMUL are the legal entity responsible for the PACE trial they tried to avoid this at the start but they had to sign up to being responsible. They should bot be allowed to avoid their duty in such a way. I can see this excuse being repeated by many trying to avoid disclosure. QMUL does employ people to do this so they should use those people to meet their legal duty.
     
  11. guest001

    guest001 Guest

    I think she needs to address these questions. Pretty important...

    Edit: I see Sly Saint is already on the mission :)
     
    Last edited by a moderator: Feb 14, 2018
  12. Barry

    Barry Senior Member (Voting Rights)

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    Rather think they are digging a nice deep hole for themselves.
     
  13. Allele

    Allele Senior Member (Voting Rights)

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    Yes and they are relying on allies to come fill that hole with a load of fresh manure.
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    I think they are just trying to pull the wool, and making an embarrassingly abysmal job of it.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It seems clear that they are lying. People like Larun are obviously a position to interpret the data. The files would appear to exist - since the claim is that they are merely unreadable.

    My recent conversation with a colleague at QMUL would suggest that other academics are pretty embarrassed by the whole goings on. I think the pressure should be maintained full throttle. The whole thing is a disgrace.
     
  16. Allele

    Allele Senior Member (Voting Rights)

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    I think we have perhaps stumbled into the same den of iniquity that caused the so-called UK ME files to be sealed from the public for something like three times the normal period of time. If someone could clarify, espicially for @dave30th 's benefit, what the files are and for how long they are sequestered, that might be useful for a future article.

    ETA: Had forgotten Valerie Elliot Smith had success in getting them released despite the unusual 78-yr embargo. Here they are:
    https://www.thegracecharityforme.org/TNA/

    One wonders what has been generating all the shenanigans and secrecy.
     
    Last edited: Feb 14, 2018
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    Is this going all the way up towards a tribunal now where perjury would be an issue?

    I'm surprised that academics within QMUL can hear us, within their ivory tower (well, breeze-block tower). Are they aware, then? We've done a ton of shouting but it's hard to tell whether anyone is listening. If they are, they could be a big help by speaking up.

    Yes, this whole thing is a disgrace, and as a patient whose health is affected by this shit, I want people going to jail if they're breaking the law in relation to it.
     
  18. Barry

    Barry Senior Member (Voting Rights)

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    Is there anything that might be useful in QMUL's Data Retention Policy I wonder ...

    http://www.arcs.qmul.ac.uk/media/arcs/policyzone/Records-Retention-Policy-2010-v01.1.pdf

     
  19. Barry

    Barry Senior Member (Voting Rights)

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    Absolutely. They are floundering and lying very badly.
     
  20. Adrian

    Adrian Administrator Staff Member

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    Before the information tribunal I remember tweeting an academic whose subject was ethics who was also on the QMUL council and he blocked me. But perhaps they know it won't go away as an issue and it will affect their reputations but I think this continued cover up will continue to do harm.

    I think it is an issue for the ethical approval of trials if QMUL can't maintain sufficient governance over trials to maintain data as a usable resource.
     
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