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Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

Discussion in 'General ME/CFS News' started by worldbackwards, Dec 2, 2015.

  1. Yogi

    Yogi Senior Member

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    That's fine I will await the blog. If it was said in private let's keep it private.
     
  2. Yogi

    Yogi Senior Member

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    "We have come under pressure from a number of sources, including Richard Horton, editor of the Lancet [the journal where the Chalder et al. paper appeared]. Comments on my blog posts were temporarily closed at PLOS’s’ Mind the Brain last Monday. Although I am still blogging there, I have moved my advocacy for releasing the the data from a cost analysis of the PACE trial published in PLOS One to my own blog, Quick Thoughts. This was done to decrease the pressure on PLOS and to ensure there was no appearance of a conflict of interest in my using their blog site. I am not involved in the decision-making at the journal concerning the release of the data and anyone can make a similar request"

    This looks disturbing but not unexpected. There is pressure from Lancet and Horton on PLOS.

    Neither Horton or the Lancet have responded to the 6 experts calling for independent data analysis. However they are trying to pressure PLOS and coyne. They will not give up easily. Horton has been very quiet on PACE. We need to keep the pressure up and get more scientists to start looking into this. I think they are trying to do a cover up and silence critics. So much at stake here $$$$. Very worrying!!!


    https://mobile.twitter.com/richardhorton1?ref_src=twsrc^google|twcamp^serp|twgr^author
     
    Last edited: Dec 18, 2015
  3. Dolphin

    Dolphin Senior Member

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    What Coyne may be referring to is the comments by the Barts Chronic Fatigue Service (headed by Peter Denton White) on the draft NICE guidelines.

    Parking badge one is the first comment here:
    http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/
    (If you ever want to find it, it's in my signature!)
     
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  4. worldbackwards

    worldbackwards A unique snowflake

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    I find it a little reassuring that it's beginning to look messy. It shows that we're getting somewhere. Winning this will never be pretty.
     
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  5. Yogi

    Yogi Senior Member

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    "We are however also concerned for the rights and welfare of trial participants. Participants did not give consent to the public release of their data when they entered the trial. In particular we are concerned to ensure that there is no risk of misuse of the data such as through inadvertent personal identification."

    http://www.kcl.ac.uk/ioppn/news/records/2015/december/release-of-data-from-the-PACE-trial.aspx"


    This is very weak excuse about patient Identification and now being concerned about patient welfare. No-one wants to identify patients. They also talk about ethics! Hahaha don't make me laugh!!

    Given the fight they are putting up I am genuinely concerned they may even try to falsify the Data. They have now had alot of time to do anything with the data.
     
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  6. Sasha

    Sasha Fine, thank you

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    That would be a criminal matter and I think the chances of it happening are extremely remote.

    Also, they'd have to be insane to try it. Anyone should be able to replicate the results of their published analyses with the dataset, and they've published loads of numerical results. Fixing up an entire dataset to replicate every single one and still be bent enough to go a certain way would be pretty much impossible.
     
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  7. Yogi

    Yogi Senior Member

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    I would also think so for any other science but there is a lot of money at stake by the PACE PIs backers - the insurers, and the DWP. It probably would be criminal but has any scientist ever been criminally prosecuted?

    With some major scandals such as in the banking scandal where alot of criminal activity took place hardly anyone got criminally prosecuted in UK . Theoretically this would be criminal but in practice would anyone be prosecuted? Given the refusals this might be worth taking a chance. In all major financial scandals in the UK Libor & FX rigging etc it was the US justice system that investigated the matters in the UK. The Uk covers things up well . Its great we have Tuller, 6 experts asking for data, and Coyne - all American - coincidence?

    P.s. I am british
     
    Last edited: Dec 18, 2015
  8. DanME

    DanME Senior Member

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    I believe not. The UKs medical establishment seems to be very well connected. A lot of researchers probably protect each other and have shared interests at stake. It's just speculation, but I guess it's much easier for American scientist to break the circle. I think it's pretty sad for science in general. Science is not about protecting your interests, your authority or secretive circles. It's about honesty, integrity, openess and truth.

    I don't know, what the Lancet's pressure on PlosOne is about or why the Lancet thinks anyone is interested in their opinion, but I guess they fear for their reputation. If PlosOne retracts the paper, everybody will ask, why the Lancet hasn't been doing anything so far. The Lancet's behaviour is a disgrace and a good indicator, why we desperately need more open and transparent journals like PlosOne.
     
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  9. John Mac

    John Mac Senior Member

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    And you can replace the word medical with political, financial, judicial etc
     
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  10. DanME

    DanME Senior Member

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    What is the reason for this? It seems, that the German medical establishment is much more fragmented. Of course we have certain groups, which stick together, but not on this massive scale.
     
  11. Yogi

    Yogi Senior Member

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    "PLOS is in contact with lawyers."
     
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  12. Esther12

    Esther12 Senior Member

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    Horton is in so deep with PACE that if it's revealed the patient's he's vilified were right all along I think he'd have to go. Senior people at The Lancet will be committed to denying reality on PACE until the pressure is overwhelming.
     
  13. jimells

    jimells Senior Member

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    But they gave themselves and other reviewers access to individual patient data, according to the Cochrane review protocol:

    So they admit that it is possible to anonymize the data and have already given it to the Cochrane reviewers, as mentioned in a previous post. But Coyne, being a Troublemaker, obviously can not be trusted to honor a confidentiality agreement regarding the data.
     
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  14. John Mac

    John Mac Senior Member

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    Not so long ago the entire British cabinet had all been to the same school, Eton.

    Last year there was an enquiry set up into allegations into child sexual abuse by important figures in the 60'/70's which had been hushed up at the time (a letter naming names had gone missing)
    The first person leading it had to step down when it was revealed her brother was the head of the judiciary at the time.
    The second person leading it had to step down when it was revealed she regularly dines with the person who last had possession of the letter.
    In the end they had to appoint someone from New Zealand.
    There was no one amongst the "elite" in Britain who wasn't tainted by association.
     
    Last edited: Dec 18, 2015
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  15. Sidereal

    Sidereal Senior Member

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    Looks like the British establishment is coming down on Coyne like a ton of bricks. Horton's alleged behaviour is disturbing.
     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    One of the six was British but your point still stands. As Coyne said, "obviously, there is something wrong in Britain".
     
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  17. Forbin

    Forbin Senior Member

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    I can't imagine what it must be like for these researchers to have to deal with doubt from the scientific / medical community.

    Oh, wait. I can.
     
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  18. user9876

    user9876 Senior Member

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    I suspect that those experimented on by the PACE team had an expectation that the trial results would be properly reported. I would have thought the first right of people who take part in a trial is that the data is used in a way that adds to knowledge about treatments of a disease.

    Can you really identify an individual from the sum of their answers on a questionnaire especially given multiple different answers will lead to the same score.
     
  19. Yogi

    Yogi Senior Member

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    Yes Britain is small island and in ALL sectors is more incestuous as it mostly focused in london compared to the USA and therefore easier for group think to take hold. Laws and regulations can be more easily changed and loopholes exploited in the Uk.

    They are holding on until FOI laws change which is happening right now and did you know that QMUL are trying to get "friendly MPs" to change FOI laws using PACE to do so.

    The establishment will be closing ranks. We need to get this out to the media and other uk scientists and doctors. The fight is still on and we need to get Coyne backed up by others and especially in the uk.
     
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  20. Woolie

    Woolie Senior Member

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    Don't forget the anti-vaccine lobby! :rolleyes:
     
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