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.

PACE Trial BMJ: Freedom of information: can researchers still promise control of participants’ data?

Discussion in 'General ME/CFS News' started by Dolphin, Sep 21, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Large Donner

    Large Donner Senior Member

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    Such bullshit, when did researchers ever promise "control of participants’ data"? They are only asked to protect participants identity.

    Data in a publicly funded trial is public information.

    So this article is proposing a scenario wherby people like Peter White gains financial remuneration via publicly funded trials but no one ever gets to see the data because, "the anonomized data belongs to the participants" and anyone who has the same diagnostic label as the participant, or any other outside researchers or affected parties, just has to accept the study conclusions at face value?

    MY ARSE!!
     
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  3. Esther12

    Esther12 Senior Member

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    First, lets all take a moment to remember how the BMJ covered the release of the PACE trial's results in 2011:

    http://www.meassociation.org.uk/201...-coverage-of-the-pace-trial-23-february-2011/

    Seeing as PACE had just released the primary outcomes from their protocol, which had showed only 20% of patients reached the threshold for mere improvement, one would have thought that would leave the BMJ feeling a little sceptical? Keen to push White for details? Not a bit of it. There seems to have been no rush for the BMJ to look over the data for themselves, or consider whether they may have been promoting quackery.

    Considering this article is so terrible in its approach, it's pretty good for us that it is so rubbish. It's amazing that no-one at the BMJ took action to stop this coming out.

    LOL.

    LOL. That's a bold claim for Hawkes and the BMJ to make. I wonder how much time and effort they put in to checking its accuracy?

    Hmmm... I don't want to pester this God amongst men, but for those who want, his unusual name makes it pretty easy to find his e-mail address.

    I really think that PACE is going to fall, and much as they'd like to, the UK medical establishment don't have what it takes to keep propping it up.

    This from Nigel Hawkes! He's now hiding behind quotes from Horton, when previously he was happy to assert:

    This new piece reads like a nervous and failed attempt at a hit-job. The whole article seems very weak (although I'm not the target audience).

    Considering how against us the BMJ seem to be, this is pretty good stuff. I was hoping that they'd reverse course and beg for forgiveness, but I can live with this level of feeble villainy.
     
  4. hixxy

    hixxy Senior Member

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    Last edited: Sep 21, 2016
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  5. user9876

    user9876 Senior Member

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    This is shocking really in that the BMJ have been pushing open data and the need to publish protocol outcomes. But when there friends fail to do this they rally round in support.

    It can't be good for the BMJs reputation. But then I expect to see similar from others in the UK who are prepared to break their principles or stay silent to support their friends.
     
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  6. sarah darwins

    sarah darwins I told you I was ill

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  7. worldbackwards

    worldbackwards A unique snowflake

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    Comforting to see that they've moved from the world of spin into outright lies. This can't last, surely.
     
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  8. Chrisb

    Chrisb Senior Member

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    After a five year battle, patients with chronic fatigue syndrome have forced researchers to release data from controversial research into treatment of the condition. But participants in the trial never consented to this. Nigel Hawkes reports

    I would be interested to see the part of the consent form which indicates that participants gave informed consent to having their data misrepresented, and used against them, without any external oversight or redress.
     
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  9. Stewart

    Stewart Senior Member

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    If my memory serves me correctly (and it does) Nigel Hawkes was the first journalist to write about Wessely's 'death threats' and the 'harrassment' of researchers, which was picked up by the BBC (and everyone else) a month or so later.

    http://www.bmj.com/content/342/bmj.d3780

    He's a freelance journalist with a history of acting as a shill for the SMC. I'm not at all surprised that he wrote this, but I wouldn't have expected the pro-data sharing BMJ to publish it. Ah well, this is the problem with print as a medium - in the time it's taken the BMJ to publish this article, anyone who's following the issue closely can see that the Matthees reanalysis has shown that QMUL really did have something to hide - leaving Mr Hawkes looking a bit of a fool for unquestioningly swallowing their line.
     
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  10. Sidereal

    Sidereal Senior Member

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    Surreal. :confused:
     
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  11. worldbackwards

    worldbackwards A unique snowflake

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    Does anyone have the faintest idea what he's claiming here? Is he saying the original protocol activity data is comparable to the trial recovery data? Or something? :confused::eek::alien::cautious:

    This is just bollocks now isn't it. This is real bunker at the end stuff.
     
  12. Daisymay

    Daisymay Senior Member

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    You have to wonder if some of these people have any principles to break.
     
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  13. Valentijn

    Valentijn The Diabolic Logic

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    I think he's saying that since different thresholds were used in defining improvement, the numbers can't be directly compared. But he's neglecting to mention that he and his co-investigators agreed upon and sold the trial as measuring apples, then later decided to switch to pears :p
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    Indeed.

    They can't claim the methods are vastly different (apples vs pears) when they previously tried to claim the change in methods were not meaningfully different (recovery vs recovery and improvers vs improvers).
     
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  15. BruceInOz

    BruceInOz Senior Member

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    I think White got his fruits mixed. They sold the trial as measuring apples but then gave us lemons.
     
  16. Gijs

    Gijs Senior Member

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    In real science data is the most important thing. Data must be transparant (anonymously!) and available. The participants of the pace trial didn't agree data sharing with Cochrane review either, did they? It is very strange this article -especially from a journalist- did not mention the poor outcomes of the Original protocol. I understand that pseudoscientists like White and Chalder also journalists like Nigel Hawkes wants to protect their scam and 'fraud'.
     
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  17. Solstice

    Solstice Senior Member

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    And now we're finally crushing those lemons to make lemonade. Oh yeaaaahhhhhhhh.
     
  18. user9876

    user9876 Senior Member

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    They are trying to confuse the issue by picking the improvement outcome rather than the recovery one. They had a small significance for improvers but none for recovery. So they don't mention recovery.
     
  19. Snow Leopard

    Snow Leopard Hibernating

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    The BMJ article was written before the "recovery" reanalysis...
     
  20. Yogi

    Yogi Senior Member

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    For the record - Nigel Hawkes of patient militant meme which was rejected by the Judge in August.


    http://forums.phoenixrising.me/inde...ing-pwme-as-threatening-psych-patients.11076/


    However Nigel Hawkes did not declare his competing interest.

     
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