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Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

Discussion in 'General ME/CFS News' started by Sasha, Aug 16, 2016.

  1. Bob

    Bob

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    Valerie will have done due research before making that announcement, so if she says there will be minor corrections, then that's what we can expect.
     
    Last edited: Sep 5, 2016
  2. trishrhymes

    trishrhymes Senior Member

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    Pardon me if I'm repeating something already said. I received an e-mail newsletter from Action for ME yesterday, which in its item on the PACE tribunal ruling said:

    'The full judgement can be read on the Information Tribunal website, although it is currently unavailable. We understand that some of the wording in the document is being revised by the tribunal judge, after which the ruling will be uploaded to the website.'

    I assume they checked this with the Tribunal office. Hope this helps.
     
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  3. Bob

    Bob

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  4. worldbackwards

    worldbackwards A unique snowflake

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    Seems to rip into Anderson and Chalder in much the same way.
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    Controversial opinion: they've done this in order to change one comma on page 36 or something, knowing that we'll all be tearing our hair out trying to find what they've changed, sniggering into their coco all the while.
     
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  6. Esther12

    Esther12 Senior Member

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    LOL. More likely it's a normal thing that we're just not aware of.
     
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  7. Large Donner

    Large Donner Senior Member

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    Prior to these minor amendments I had not read the whole decision, I was just pleased that the panel had seen through the nonsense arguments of QMUL.

    Now as a result of the speculation as to the amendments I have read the whole document and it is clearly absolutely damning of QMUL, Anderson and Chalder.

    QMUL have just assured that more and more people, myself being one have further scrutinized the whole argument and the facts as broken down, and now on official tirbunal/court record.

    The further scientific community now has a record of the lunacy that was the QMUL argument.

    This puts the people involved in the PACE trial up on a stage in front of the whole ethos of what the scientific method and the idea of building a scientific consensus is.....open and shared data to support your conclusions or at least a conclusion.

    Previously the PACE crowd was getting away with sound bites, narratives and spin playing on the knowledge that most academics are too busy to read and understand whole studies and papers particularly if they have no direct involvement in that field.

    Now the scientific community has a go to document of judgement with a collection of easy to understand single statements, condemning the very nature of their conduct, in and leading to the trial, and its conclusions via the simple decision that refusal to share data in itself brings upon itself suspicion and further scrutiny of their poor work.

    Now any academic who had shared belief in the BPS model due to "evidence base", that they probably had never even read, only has to be sent a link to this simple document that is fully independent and cannot be spun of as "patient activists who don't like a certain conclusion".

    They just don't know how to stop shooting themselves in the foot.
     
    Last edited: Sep 6, 2016
  8. A.B.

    A.B. Senior Member

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    I checked this with some tools in less than ideal circumstances, and with limited concentration, and only found an error that has been corrected.

    Previously the "more" was "less".

    The new version contains text rather than images of text, which is nice.

    PS: less than ideal circumstances: running an OCR version and a text version through a text extraction tool, trimming excess white space and line endings to reduce noise and replacing fancy versions of certain characters with their normal versions to further reduce noise, then running it all through a difference checker tool, still finding plenty of noise that was unfortunately difficult to correct programmatically, and then finally looking through the 140 or lines with differences.
     
    Last edited: Sep 6, 2016
  9. worldbackwards

    worldbackwards A unique snowflake

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    Chortle.
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    So it's more or less the same then.

    Very impressed with the tech stuff, I tried running it through my free OCR but it was too big for that so I just gave up.
     
  11. JES

    JES Senior Member

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    I did a quick check with WinMerge as well, comparing the latest version with a searchable PDF version of the original document that a member post here.

    Apart from being searchable now, there were some other minor spellings corrected, "seasoning" corrected to "reasoning" on p. 6 and "Ron Davies" to "Ron Davis" on p. 32. Didn't spot any major differences.
     
  12. Kalliope

    Kalliope Senior Member

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    This is not directly related to PACE, but is a medical scandal which has taken place in Sweden. In short the Italian surgeon Paolo Macchiarini at Karolinska university hospital claimed to have developed a revolutionary synthetic windpipe, but instead it caused deaths among patients. He is also accused for cutting corners in research projects. He performed surgery on patients _knowing_ it would not work.

    The reason I am sharing this here, is that thanks to an external inquiry, the scandal has led to consequences also for people in leading positions. Quite a few are now leaving their jobs and thus taking responsibility for what has happened. It is good to see that negligence have consequences.

    An article from the university hospital (Karolinska institute) involved.

    BBC has also covered the case:
    Two judges have been asked to leave a panel that picks the Nobel prize for medicine in a scandal surrounding a disgraced Italian transplant surgeon.
     
  13. Bob

    Bob

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    I've run it through a document comparison tool as well. I agree with the others that it's almost exactly the same document with just a few typos and spellings corrected. I missed the "more" and "less" correction when i was scrolling through, but I see it now. That's a helpful correction!
     
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  14. Cheshire

    Cheshire Senior Member

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    Isn't the Lancet involved in the Macchiarini scandal as well, or I am mixing everything?
     
  15. Kalliope

    Kalliope Senior Member

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    No mixing :) They even defended him...
     
  16. trishrhymes

    trishrhymes Senior Member

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    One thing I spotted reading it this time that I didn't notice first time through is that QUML had argued that releasing the data might be detrimental in getting funding for future trials, but that this was dismissed because they already have funding in place for a further trial. (see page 41, item viii).

    Another trial?? This rings alarm bells. Do we know about it, what is it, should we be trying to get it stopped until the PACE data has been re-analysed?

    Any clue, anyone?
     
  17. worldbackwards

    worldbackwards A unique snowflake

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    It's called GETSET (you lazy buggers). It's like PACE with a special book. You've missed all the fun. :sleep:
     
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  18. Yogi

    Yogi Senior Member

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    It is directly related as both were published (1) in the Lancet (2) in 2011 (3) Richard Horton has refused to retract the Macchiarini article. (4) patients have been harmed (5) Macchiarini was regarded as "Superstar" and untouchable like Wessely/White/Sharpe. (6) Lots of establishment figures were deeply involved and protective of him rather than blowing the whistle and now they finally are all being culled.

    The parallels are striking!

    The whole board of Sweden's top-ranked university was just sacked because of the Macchiarini scandal
    http://uk.reuters.com/article/uk-sweden-healthcare-surgeon-idUKKCN11B29S

    Culture of silence and nonchalance protected disgraced trachea surgeon (updated)
    http://www.nature.com/news/culture-...ted-disgraced-trachea-surgeon-updated-1.20533

    Comment from the brilliant Leonid Schneider
    At least things are moving with Macchiarini - now for PACE!!

    We need to comment on all these Macchiarini articles and mention the other Lancet scandal of 2011 and get more exposure for the PACE scandal.

    Anyone associated with PACE scandal/Lancet should now assess the situation and decide whether they wish to jump ship, blow the whistle and leave the main rats to sink!

    I know QMUL et al read this forum so here is something for them to deliberate over:

    https://www.gov.uk/whistleblowing/what-is-a-whistleblower
     
    Last edited: Sep 6, 2016
  19. Kalliope

    Kalliope Senior Member

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    And maybe try to approach the journalists who have covered the Macchiarini-case?
     
    Last edited: Sep 6, 2016
  20. user9876

    user9876 Senior Member

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    I thought that was funding for a long term follow up study.

    In the MRC's database for the trial

    http://gtr.rcuk.ac.uk/projects?ref=G0200434

    Under the further funding tab in the outcomes section they list

    So I've no idea what this is to fund. Or why a charity would fund it,
     
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