1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 28th October 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Better Science through Better Data 25th October 2017 - Esther Crawley!

Discussion in 'General ME/CFS news' started by Barry, Oct 18, 2017.

Tags:
Page 1 of 5
  1. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,412
    Barry, Oct 18, 2017
    #1
    EzzieD, Moosie, Invisible Woman and 10 others like this.
  2. TiredSam

    TiredSam Committee Member

    Messages:
    10,556
    Location:
    Germany
    Hmm. Our favourite buzzword.
     
    TiredSam, Oct 18, 2017
    #2
    Moosie, MEMarge, Invisible Woman and 4 others like this.
  3. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    It's the beast with 10,000 heads!
     
    Allele, Oct 19, 2017
    #3
    MEMarge, Invisible Woman, Luther Blissett and 4 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    55,290
    Location:
    UK
    I'm hoping, given the other speakers seem to be in favour of open data, they will challenge robustly her narrative of harassment and being the victim of antiscience fanatics.
     
    Trish, Oct 19, 2017
    #4
    Invisible Woman, Jan, Luther Blissett and 6 others like this.
  5. JCB

    JCB Senior Member (Voting Rights)

    Messages:
    294
    Location:
    England
    I think we should break into the middle of her talk, shout "Yah boo sucks" and sling FoIs at everubody.
     
    JCB, Oct 19, 2017
    #5
    MEMarge, Luther Blissett and Andy like this.
  6. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Someone suggested a rather clever way of disrupting these events to me recently; he said get everyone you can to book tickets then don't turn up. Nothing spoils these events like rows and rows of empty seats.
     
    Liv aka Mrs Sowester, Oct 19, 2017
    #6
    Alvin, dannybex, Moosie and 13 others like this.
  7. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,560
    Location:
    UK
    Although I think it would be good for Crawley to speak to an audience who really believe in open data. Although I'm not sure many scientist who claim to believe in open data really do.
     
    Adrian, Oct 19, 2017
    #7
    Barry, Invisible Woman, Trish and 6 others like this.
  8. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Cheshire, Oct 23, 2017
    #8
    Invisible Woman, Trish, TiredSam and 2 others like this.
  9. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Bump
    It's today! 14.30 UK time.
     
    Cheshire, Oct 25, 2017
    #9
    Invisible Woman, Trish, Valentijn and 1 other person like this.
  10. Andy

    Andy Committee Member

    Messages:
    22,988
    Location:
    Hampshire, UK
    Should we take bets that "technical difficulties" won't allow for St Esther's ramblings to be broadcast?
     
    Andy, Oct 25, 2017
    #10
    Invisible Woman, Snowdrop, Jan and 4 others like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    55,290
    Location:
    UK
    I think my brain's addled. I just read that as 'St Esther's scramblings to be breakfast.'

    My bet is on hers being unaccountably unavailable.
     
    Trish, Oct 25, 2017
    #11
    MEMarge, Woolie, Invisible Woman and 3 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    55,290
    Location:
    UK
    Now watching the conference. Good quality live stream. Will leave it on and wait to see what happens in a few hours time when St Esther is due to speak.
     
    Trish, Oct 25, 2017
    #12
    MEMarge, Invisible Woman, Cheshire and 1 other person like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    55,290
    Location:
    UK
    It is streaming live.

    I'm not sure I can bear to watch. She's already telling us how wonderful she is, and being flirty.
     
    Trish, Oct 25, 2017
    #13
    Moosie, MEMarge, Woolie and 6 others like this.
  14. Valentijn

    Valentijn Guest

    Messages:
    2,275
    Location:
    Netherlands
    We need a "vomit" emoticon, stat!
     
    Valentijn, Oct 25, 2017
    #14
    dannybex, Moosie, MEMarge and 7 others like this.
  15. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Well well well

    To make it short, Esther Crawley explained how she was exposed to abuse by people wanting to stop her research. All she wants is to help children, parents and children desperately want research. But some people don't want children to be helped.

    And data can't be shared because children would be identified.
     
    Cheshire, Oct 25, 2017
    #15
    Joh, Moosie, MEMarge and 8 others like this.
  16. Trish

    Trish Moderator Staff Member

    Messages:
    55,290
    Location:
    UK
    OK, so I sat through the whole thing. She insists she as an open data policy with bona fide researchers from other universities, but goes on and on about how worried she is about FOI release of data because children could be identified, and data can't be fully anonymised and they didn't consent to this.

    She said a lot about harassment and abuse and hinted at a lot more. She talked about campaigns against her research. And went on and on about how the children love the research and want more of it.

    She also says she can't use actigraphy because wearing the actometer would identify kids as part of the study and they would be bullied.

    She mentioned the PACE FOI tribunal and repeated several times that she had a copy of it in her bag if anyone wanted to see it, hinting that it was a bad thing without being explicit about why.

    She sold herself to the audience as a sincere doctor doing wonderful work against terrible harassment and repeated ad nauseam what a wonderful doctor she is persevering against the odds.
     
    Trish, Oct 25, 2017
    #16
    Moosie, MEMarge, Invisible Woman and 10 others like this.
  17. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    And she kept talking about fake news. Oh the irony.
     
    Cheshire, Oct 25, 2017
    #17
    Moosie, MEMarge, Invisible Woman and 5 others like this.
  18. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Cheshire, Oct 25, 2017
    #18
    Woolie, Andy and Valentijn like this.
  19. Joel

    Joel Senior Member (Voting Rights)

    Messages:
    941
    Location:
    UK
    Did she give any actual evidence of harassment in her talk?

    The tribunal certainly didn't see any, they said there was no evidence of any harassment of PACE researchers. Crawley was not a PACE researcher, but despite all these claims I have yet to see any actual proof of these claims.
     
    Joel, Oct 25, 2017
    #19
    MEMarge, Invisible Woman, Jan and 6 others like this.
  20. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,839
    Location:
    UK
    At times I regret the decision to remove wolves, bears, smallpox and tar pits. I'm not sure who made the decision but I'm definitely considering considering sending them a ":(" by email.
     
    Wonko, Oct 25, 2017
    #20
    Invisible Woman, Barry, Luther Blissett and 1 other person like this.
Page 1 of 5

Share This Page