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PACE trial data release: MEA website poll

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 1, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    PACE trial data release: MEA website poll for March

    The PACE trial research group at Queen Mary University London (QMUL) have indicated that they would welcome the views of people with ME/CFS on their refusal to release anonymised data from the PACE trial >>

    "We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.”

    This month's MEA website poll gives people the opportunity to express their opinion

    MEA website question:

    • Should or should not the anonymised data from the PACE trial be released for independent analysis?
      • Should be released (100%, 3 Votes)

      • Should not be released (0%, 0 Votes)

      • Not sure (0%, 0 Votes)

      • No opinion (0%, 0 Votes)


        Total Voters so far = 3

    Vote via the home page on the MEA website:
    http://www.meassociation.org.uk

    As there is considerable international interest in this issue, overseas votes are welcome in this poll

    MEA letter to QMUL supporting release of the PACE trial data:
    http://www.meassociation.org.uk/201...o-release-of-pace-trial-data-9-february-2016/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Comet, Kati, Ritto and 21 others like this.
  2. Scarecrow

    Scarecrow Revolting Peasant

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    This is going to be fun.
     
  3. TiredSam

    TiredSam The wise nematode hibernates

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    We'd better hang on to the data from that poll, it might be important. Can someone remind the organizers not to leave the results in an unlocked cabinet?
     
  4. Scarecrow

    Scarecrow Revolting Peasant

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    Still unanimous. Who will be the first to break rank?
     
    Last edited: Mar 1, 2016
  5. worldbackwards

    worldbackwards A unique snowflake

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    Calling Professor Sharpe! Your country awaits!
     
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    As of now 109 people have voted, all have voted YES. Shocking!
     
    MEMum, Comet, Sasha and 4 others like this.
  7. sarah darwins

    sarah darwins I told you I was ill

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    Cornwall, UK
    260. All yes.
     
  8. Large Donner

    Large Donner Senior Member

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    I think we should be careful not to be drawn in on their terms. These people are very calculated and this could well be another SMC scheme to try to cause some more "controversy" by starting a set of disagreements that they can cherry pick.

    It would not be unlike them to try to play divide and rule and only publicize the most "vexatious" responses to their request for engagement.

    Just saying!!
     
    Sean likes this.
  9. Invisible Woman

    Invisible Woman Senior Member

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    ....and mine makes 273 to release. No one has broken ranks yet!....
     
  10. A.B.

    A.B. Senior Member

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    284 for, 1 vote against.

    Shouldn't have invited Sharpe. :nervous:
     
    MEMum, Comet, Valentijn and 7 others like this.
  11. TiredSam

    TiredSam The wise nematode hibernates

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    I was wondering when they'd send a shill.

    Still haven't made up my mind how to vote yet. What's everyone else doing?
     
    Comet, Valentijn, duncan and 3 others like this.
  12. Scarecrow

    Scarecrow Revolting Peasant

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    There's always somebody wanting to spoil it for everyone else :rolleyes:
     
  13. Scarecrow

    Scarecrow Revolting Peasant

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    Now at 408 for to1 against.

    Is this the most one sided poll ever?

    Are MEA going to get a mention in the Guinness book of records?
     
    Valentijn likes this.
  14. worldbackwards

    worldbackwards A unique snowflake

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    I'd have voted no if I'd have waited long enough to think about it. Just because I'm a contrary bastard.
     
    Valentijn likes this.
  15. John Mac

    John Mac Senior Member

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    At least it proves that button is working
     
    Valentijn, duncan, leela and 5 others like this.
  16. Esther12

    Esther12 Senior Member

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    No fair, someone else in my house voted before I could!

    They'd better not be the one who voted against...
     
    barbc56, Valentijn, duncan and 3 others like this.
  17. charles shepherd

    charles shepherd Senior Member

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    Wow!

    I'm just back from London where I've been at an evening meeting with Dr Margaret Chan, the Director General of the World Health Organisation - who was talking about new and emerging infections including the zika virus (she is just back from Brazil) and Ebola virus (where post infectious fatigue is becoming a recognised complication - see note below)

    And I see that we have just broken through the 500 vote barrier in less than 24 hours - a new record for the MEA monthly website poll!

    Current voting intentions:

    • Should or should not the anonymised data from the PACE trial be released for independent analysis?
      • Should be released (100%, 501 Votes)

      • Should not be released (0%, 1 Votes)

      • Not sure (0%, 0 Votes)

      • No opinion (0%, 0 Votes)


        Total Voters: 502

    Post Ebola virus disease syndrome - the symptoms are rather familiar.....
    Expert Rev Anti Infect Ther. 2015 Aug 13:1-3. [Epub ahead of print]
    Post-Ebolavirus disease syndrome: What do we know?
    Carod-Artal FJ1.
    Author information

    Abstract
    As the current Zaire ebolavirus disease outbreak in West Africa fades, the health problems of the more than 16,500 survivors have come to light. A wide range of mental and physical symptoms may occur during the convalescence stage. Reported symptoms of "post-Ebolavirus disease syndrome" (PEVDS) include chronic joint and muscle pain, fatigue, anorexia, hearing loss, blurred vision, headache, sleep disturbances, low mood and short-term memory problems. PEVDS has been associated with a decrease in functionality and difficulties to return to work. Further studies are needed to fully categorize the clinical spectrum of PEVDS. Diagnostic criteria and surrogate markers for the early diagnosis of PEVDS, and implementation of specialized health services to treat and follow-up survivors are also needed.

    Dr Margaret Chan lecture at Royal College of Surgeons tonight:
    https://www.gov.uk/government/news/dr-margaret-chan-delivers-mhra-annual-lecture

    CS
     
    Justin30, Comet, eafw and 12 others like this.
  18. worldbackwards

    worldbackwards A unique snowflake

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    It'll be their perfectionism. I guarantee it.
     
    mango, Esther12, Valentijn and 8 others like this.
  19. charles shepherd

    charles shepherd Senior Member

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    Current votes - well over 600 in less than 24 hours and only one vote against releasing the data so far! >>

    Should or should not the anonymised data from the PACE trial be released for independent analysis?

    Should be released (100%, 642 Votes)
    Should not be released (0%, 1 Votes)
    Not sure (0%, 0 Votes)
    No opinion (0%, 0 Votes)
    Total Voters: 643
     
    MEMum, mango, Scarecrow and 14 others like this.
  20. Valentijn

    Valentijn Senior Member

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    742 votes in favor of releasing the data.
    1 vote against.
     
    barbc56, sarah darwins, Kati and 3 others like this.

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