New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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QMUL responds to Davis/Tuller/Levin/Racaniello PACE data FOI

Discussion in 'General ME/CFS News' started by Daisymay, Jan 19, 2016.

  1. Daisymay

    Daisymay Senior Member

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    Last edited: Jan 19, 2016
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  2. Dolphin

    Dolphin Senior Member

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    This looks to me like a red herring. The latest follow-up I recall being talked about was at five years. The trial is over now longer than that.
     
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  3. Kati

    Kati Patient in training

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    I wonder if we ask astronauts on the International Space Station to make a request, that we could have a successful appeal? The world at large, I mean, is restricted to the atmosphere. :nerd::whistle::nerd:
     
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  4. Sasha

    Sasha Fine, thank you

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    @Daisymay, would it be OK if you didn't quote the full thing here, so that Virology Blog can be rewarded with the traffic? :)

    I also wondered if you might want to amend your title to "QMUL responds to Davis/Tuller/Levin/Racaniello PACE data FOI request" to distinguish it from all the others?

    (Don't want much, do I?! :eek::))
     
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  5. Kati

    Kati Patient in training

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    image.jpg

    @ballard's cartoon is again quite appropriate here, and as she said it herself in previous posts feel free to use on social media.
     
    ahimsa, beaker, Sushi and 6 others like this.
  6. TiredSam

    TiredSam The wise nematode hibernates

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    Is this consistent with what the PACE authors wrote in their Lancet reply today:

     
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  7. sarah darwins

    sarah darwins I told you I was ill

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    So are they going to schedule another follow-up for, say, 10 years? Probably. Ad infinitum.
     
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  8. Daisymay

    Daisymay Senior Member

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    No problem, done, I should remember to post only part of articles.
     
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  9. Sean

    Sean Senior Member

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    Yes, all those pesky facts being brought to light at the wrong time could really cramp the style in which some people have become accustomed to operating.
     
    Last edited: Jan 19, 2016
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  10. Forbin

    Forbin Senior Member

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    Is the form by which data was collected from the patients known? I can't see how it could identify a patient unless it was in essay form ("My fatigue has abated to the point where I am once again able to fulfill my obligations as King of Ruritania.")

    A patient might be able to pick out their own data (say, if they're the only one who walked 123 paces), but no one else would know this.

    I wonder if they are concerned with polluting the patient pool by letting them see the responses of other patients - a concern which apparently wasn't foremost in their minds when they sent out their cheer-leading newsletter.
     
    beaker, Isabelle, Sushi and 16 others like this.
  11. Woolie

    Woolie Senior Member

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    :rofl::rofl::rofl::rofl::rofl::rofl:
     
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  12. snowathlete

    snowathlete

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    How silly is that response? Wow.

    For any further follow up (hard to see the point as the last one proved it was a failure already) to be jeopardised in any way the data must be damning. How else could it be a problem? If the data was sound then there would be nothing new to criticize and therefore no participants would be put off responding to follow up for this reason. In fact, logically, if it was sound then much of the current controversy would be resolved, increasing the chance of participants responding. So you're left wondering, more than ever, what do they know about how bad the data is that can make them take this approach of such illogical refusal?
     
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  13. Esther12

    Esther12 Senior Member

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    Yes - they can count pretty much anything.
     
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  14. halcyon

    halcyon Senior Member

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    I guess the PIs are going to keep riding this five million pound hobby horse until they retire. This means we can look forward to more papers from them, hurrah.

    Oh I feel better already.
     
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  15. Esther12

    Esther12 Senior Member

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    It's always good to get more of their excuses on the record.
     
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  16. Kati

    Kati Patient in training

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    From tweetosphere:

    [​IMG] Michael VanElzakker (@MBVanElzakker)
    2016-01-19, 6:29 PM
    "We can't anonymize Likert scale data." Hard to convey in 140 characters just how laughable this is. #opendata twitter.com/profvrr/status…

    Then this:

    [​IMG] Michael VanElzakker (@MBVanElzakker)
    2016-01-19, 6:29 PM
    Swap every name for a number. Done.

    As he is answering Vincent Racaniello's tweet:
    [​IMG] Vincent Racaniello (@profvrr)
    2016-01-19, 1:41 PM
    At least we’re not vexatious -Queen Mary Uni denies of our FOI request for #PACE trial data #mecfs @davidtuller1 bit.ly/1Pf6cR0



    Good times.
     
    Last edited: Jan 20, 2016
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  17. Esther12

    Esther12 Senior Member

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    Their claims about it being personal data are so absurd to anyone with any familiarity with the data actually being requested. Anyone know if there will be a record of the tribunal session publicly available? Would love to see their arguments on this under cross-examination.
     
    Cheshire, snowathlete, mango and 8 others like this.
  18. Mrs Sowester

    Mrs Sowester Senior Member

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    Hi all, New here and my biggest problem is cognitive function so please forgive me if I'm overly simplistic or missing something, but...having read the QMUL response are they suggesting the request for data release includes recorded patient interviews/therapy sessions? Is this where the sticking point lies?
    The ME/CFS community and researchers only want the numerical data for analysis, which is obviously easy to anonymise - but if the PACE team distort this request by suggesting release of data includes highly personal and identifying audio recordings then they have a good excuse to refuse the release of data on the grounds of patient confidentiality.
    The data release request published is very precise in what data it is asking for - maybe, to avoid (deliberate?) confusion they need to stress what data they are not requesting.
     
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  19. jimells

    jimells Senior Member

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    No, they are only concerned with hiding the data at all costs. I believe their strategy is to delay, delay, delay until they get the law changed. Considering the current government's obsession with "security" and secrecy, this probably won't be a problem.

    At this point we don't even need the data to show the trial is junk - the latest followup paper admits a null result. So what is there to hide? I believe it is evidence of harms caused by their worthless and damaging GET "treatment". They are clearly damaging their reputations in academic circles, but deliberately hiding adverse effects could put them in serious legal jeopardy.

    @Mrs Sowester welcome to the forum. I hope you find it helpful.

    http://www.ncbi.nlm.nih.gov/pubmed/26521770
     
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  20. JohnCB

    JohnCB Immoderate

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    According to the ISRCTN Registry ISRCTN54285094 ( PACE)(sorry I can't post links yet)
    Overall trial start date
    14/06/2004
    Overall trial end date
    01/07/2011
    (sorry I can't post links yet)

    Do those dates mean anything?
     
    sarah darwins likes this.

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