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.

FINE Trial team remove raw data file: pressure from PACE Trial team?

Discussion in 'General ME/CFS News' started by Dolphin, May 19, 2016.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0156120

    The file is available at: https://www.mediafire.com/?rvh3brmgoaznude
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208
    I wonder could the PACE Trial team have pressurised the FINE Trial team to remove the file as it made them look bad as they wouldn't share or release similar data despite also publishing in Plos One.
     
  3. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208

    Attached Files:

  4. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    Not surprised that their editor was unconcerned by this.

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144623

    Very odd though. How could the data have been published in error, and what possible reason is there for retracting it now that it's already available to everyone? Does look like a political move.
     
  5. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208
    Woolie, barbc56 and Yogi like this.
  6. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

    Couldn't be.... or COULD it?
     
    Woolie, Comet and barbc56 like this.
  7. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    They say:

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144623
     
    Last edited: May 19, 2016
    mango, Sidereal, Valentijn and 7 others like this.
  8. Cheshire

    Cheshire Senior Member

    Messages:
    1,122
    Likes:
    9,003
    The PACE team are arguing that raw data can't be shared, the FINE data being released makes that look like a weak argument. So remove the FINE data, and voilà, the raw data can't be shared.
     
    Aurator, mango, Sidereal and 15 others like this.
  9. Yogi

    Yogi Senior Member

    Messages:
    1,131
    Likes:
    6,885
    Last edited: May 19, 2016
  10. Yogi

    Yogi Senior Member

    Messages:
    1,131
    Likes:
    6,885
    Aurator, Sean, Comet and 3 others like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208
    This is another reason that the PACE Trial investigators don't like the data in that file:

    http://www.ncbi.nlm.nih.gov/pubmed/23363640#cm23363640_14248

     
    Last edited: May 19, 2016
    GalaxiiGrl, mango, Bob and 15 others like this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Wowww. Nice write-up!

    Bona fide researchers... defined as "those who agree with us", presumably.

    How do they get to decide who counts as a 'real' researcher? This in and of itself is offensive. Either information is available to everyone or we're just "taking their word for it".

    New meme because I can't believe I found this:

    [​IMG]
     
    Last edited: May 19, 2016
  13. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
  14. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,863
    Yes that letter alone is so telling.

    How can data be treated seriously when patients quite clearly were confused

    [ETA Thanks @Dolphin for pointing out i had incorrect author, sorry I saw Toms name and got confused]
     
    Last edited: May 19, 2016
    Marky90 likes this.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    10,681
    Likes:
    28,208
    FYI, Sam Carter wrote it.
     
  16. Yogi

    Yogi Senior Member

    Messages:
    1,131
    Likes:
    6,885
    Sidereal, Sean and Woolie like this.
  17. Yogi

    Yogi Senior Member

    Messages:
    1,131
    Likes:
    6,885
    Coyne is onto it.



     
  18. user9876

    user9876 Senior Member

    Messages:
    2,584
    Likes:
    18,184
    Maybe they will withdraw their paper
    http://eprints.hud.ac.uk/12472/1/1748-5908-6-132.pdf
    where they quote patents as I assume they dont have ethical permission to do that. But then PACE also released individual patient data in their SAE summaries in the appendix of the lancet paper
     
    Bob, Mrs Sowester, Valentijn and 7 others like this.
  19. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    You don't publish raw data in error and then take months to correct it. If such a genuine error were to be made it would be an extremely serious breach requiring serious questions about researcher and journal procedures, and in such a case would be corrected very promptly, as in hours, or at worst, days.

    I am being asked to believe the data was published in error and not noticed for eons and that the current political pressure on FINE's sister study (PACE) to publish their comparable data is a coincidence and nothing to do with this. I do not buy it. Who would? In today's modern world where you cannot publish anything on the internet and then take it back and bury it, there would be no logic in publishing a correction where the data is absent. The more obvious logic is that FINE having released their data made it incredibly difficult for it's sister trial PACE to refuse to publish comparable data when they have been asked to do so and this move gives PACE an answer when presented with that question: FINE published their data. Why can't you?
     
    Aurator, GalaxiiGrl, mango and 21 others like this.
  20. Yogi

    Yogi Senior Member

    Messages:
    1,131
    Likes:
    6,885
    It took them 17 months to notice this ethical breach after submitting?

    It took them 5 months to notice this ethical breach after it being in the public domain where "motivated intruders" and "vexatious ME activists" had access to it and risked "de-anonomysing the data" ?

    Someone should alert there ethics and governance of Manchester university. Surely the University of Manchester should launch an urgent investigation and these investigators should be suspended with immediate effect whilst this investigation takes place.


    The FINE And PACE PIs really do think we are fools.
     
    Last edited: May 20, 2016
    Aurator, mango, Sidereal and 15 others like this.

See more popular forum discussions.

Share This Page