1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Discuss the article on the Forums.

QMUL/PD White refuse request for data for PACE Trial's original primary outcome & recovery criteria

Discussion in 'General ME/CFS News' started by Tom Kindlon, Dec 27, 2013.

  1. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    205
    Likes:
    553
    Queen Mary, University of London, where the PACE Trial's chief Principal Investigator, Peter D White is based, have refused to release the data (percentages) for the PACE Trial's three original primary outcomes and for the original recovery criteria, stating it would cost too much.

    [Comment: Many of us believe that the results of the PACE Trial would look a lot different if such data was released e.g. estimate that the recovery rates are most likely in single figures (in terms of percentages) rather than the 22% Peter White, Trudie Chalder and Michael Sharpe published with the revised criteria].

    This trial cost approximately UK£5 million of taxpayers' money.

    In the House of Lords in February, it was stated by a government spokesperson that long-term follow-up studies (at 2.5 years) would be done on the PACE Trial data, so the claim there is no statistician to calculate the data is odd. Also, no fancy mathematics/statistics is required to get the data and the database was designed to collect the data.

    ===========================================

    http://bit.ly/1cuHxCD i.e. https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2

    RustyJ, alex3619, Valentijn and 9 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,340
    Sth Australia
    I think we all knew we wouldnt get that data!! We also all know why and its not for the reason they are saying.

    There should be an outcry on so much money being sent when people cant even get basic data on this study.

    Thanks Tom. I hope you keep being like a dog who wants its bone with all this....
    rosie26, RustyJ, leela and 3 others like this.
  3. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,166
    Likes:
    1,424
    Australia
    Most researchers I know love having an excuse to spin out yet another paper. Just saying...
  4. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    205
    Likes:
    553
    I'm afraid your subtlety is a bit lost on me, Snow Leopard. Are you saying you think it shouldn't be difficult to get a researcher/researcher team that would be willing to access the data and publish a paper on the results?
  5. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,166
    Likes:
    1,424
    Australia
    Publish or Perish as the saying goes... ;)
  6. biophile

    biophile Places I'd rather be.

    Messages:
    1,249
    Likes:
    3,306
    Perhaps White et al would rather "perish" than publish the original primary outcomes / recovery criteria? ;)

    Except we got a bunch of post-hoc dubiousness instead.
    Esther12, Valentijn and Tom Kindlon like this.

See more popular forum discussions.

Share This Page