Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

"Another request for data from the PACE trial" 36 more scientists join request for PACE data

Discussion in 'General ME/CFS News' started by Kyla, Feb 10, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,222
    Canada
    http://www.virology.ws/2016/02/10/another-request-for-data-from-the-pace-trial/

     
  2. shannah

    shannah Senior Member

    Messages:
    1,360
    Likes:
    1,633
    Gotta love that list of names!
     
    rosie26, mango, JaimeS and 9 others like this.
  3. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,106
    Yorkshire, England
    Dr Horton must have meant 'traveling' in the metaphorical sense.
     
    mango, JaimeS, taniaaust1 and 13 others like this.
  4. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    barbc56 and Daisymay like this.
  5. Forbin

    Forbin Senior Member

    Messages:
    959
    Likes:
    4,026
    Wow! All those prominent names! This just keeps getting more "vexatious." :)
     
    Roseblossom, medfeb, Snowdrop and 7 others like this.
  6. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,191
    On the contrary, the narrative of "vexatious" requests is becoming an embarrassment for PACE authors.
     
    Snowdrop, barbc56, JaimeS and 2 others like this.
  7. Forbin

    Forbin Senior Member

    Messages:
    959
    Likes:
    4,026
    I, of course, meant "vexatious" in the non-legal sense - i.e., "causing or tending to cause annoyance, frustration, or worry" on the part of the PACE authors. :)
     
    jadam914, BurnA and Daisymay like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,788
    Likes:
    34,211
    UK
    Or he's travelling to Mars.

    So grateful to these signatories that I'm crying. :cry:
     
    Roseblossom, rosie26, barbc56 and 4 others like this.
  9. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,176
    Some new (to me) names on that list.
     
  10. Daisymay

    Daisymay Senior Member

    Messages:
    738
    Likes:
    4,018
    Roseblossom, barbc56, JaimeS and 3 others like this.
  11. Gijs

    Gijs Senior Member

    Messages:
    644
    Likes:
    1,301
    Very, very impressive letter of real scientists! This can not be ingnored anymore. The Pace Trial is becoming more and more controversial.
     
    rosie26, barbc56, JaimeS and 2 others like this.
  12. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,027
    Another nail in the coffin.
     
    barbc56, JaimeS, jimells and 2 others like this.
  13. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,284
    PACE is falling.
    My bet is they retract the paper and say they were forced to do it because they couldn't release the data without breaking trial patient confidentiality. They'll get to climb down and save some face.
    The AfME statement last night is giving them a get out of jail free card which is a shame.
    It'll be interesting to see what happens in UK NHS ME clinic provision while the NICE guidelines are quibbled over after PACE falls.
     
  14. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,191
    With any luck the other CBT/GET studies the NICE guidelines are based on will be scrutinized and also found to be unconvincing.
     
  15. Chrisb

    Chrisb Senior Member

    Messages:
    1,051
    Likes:
    5,358
    It is interesting to observe that the only additional signatories from the UK (in addition to Prof Edwards) are Doctors Shepherd, Speight and Weir of whose independence of mind and professional integrity we were already assured.
     
    Roy S, mango, worldbackwards and 4 others like this.
  16. John Mac

    John Mac Senior Member

    Messages:
    316
    Likes:
    1,515
    Liverpool UK
    What statement is that @Mrs Sowester
     
  17. Mrs Sowester

    Mrs Sowester Senior Member

    Messages:
    1,033
    Likes:
    7,284
    barbc56 and John Mac like this.
  18. John Mac

    John Mac Senior Member

    Messages:
    316
    Likes:
    1,515
    Liverpool UK
    "Action for M.E. has been asked to clarify its position on the PACE Trial and the release of data. As a charity, it’s very important that we consider the wide range of views shared with us and use these to inform our work. We have received requests to write to QMUL and support the release of data. We have also received requests from people who were involved in the Trial as participants to support t...hem to ensure that their data should not be released, anonymised or otherwise, as this is a breach of their consent. As the scientific debate about the PACE trial moves forward, we continue to listen to our supporting members, carers and advocates that contact us to share their concerns and feedback as well as the discussion that continues on social media. We take our role and position very seriously and for this reason the Trustees will carefully consider the issues and our position at the forthcoming Board meeting and action will be taken following this."

    What a cop out
     
  19. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,384
    Scotland
    Bear in mind that it's an interim statement from AfME. Their official position should follow after the next Board meeting.

    Still time to for anyone to make their opinion known to AfME if you haven't already done so.
     
  20. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,191
    Hard to believe that patients don't want anonymized data to be shared. I wonder what these patients were told. Or if they're not PACE authors posing as patients.
     
    JaimeS, Valentijn, Sean and 1 other person like this.

See more popular forum discussions.

Share This Page