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

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

  1. Barry

    Barry Senior Member (Voting Rights)

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  2. TiredSam

    TiredSam Committee Member

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    Hmm. Our favourite buzzword.
     
  3. Allele

    Allele Senior Member (Voting Rights)

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    It's the beast with 10,000 heads!
     
  4. Trish

    Trish Moderator Staff Member

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    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.
     
  5. JCB

    JCB Senior Member (Voting Rights)

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    I think we should break into the middle of her talk, shout "Yah boo sucks" and sling FoIs at everubody.
     
    MEMarge, Luther Blissett and Andy like this.
  6. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    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.
     
    Alvin, dannybex, Moosie and 13 others like this.
  7. Adrian

    Adrian Administrator Staff Member

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    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.
     
    Barry, Invisible Woman, Trish and 6 others like this.
  8. Cheshire

    Cheshire Moderator Staff Member

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  9. Cheshire

    Cheshire Moderator Staff Member

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    Bump
    It's today! 14.30 UK time.
     
  10. Andy

    Andy Committee Member

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    Should we take bets that "technical difficulties" won't allow for St Esther's ramblings to be broadcast?
     
  11. Trish

    Trish Moderator Staff Member

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    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.
     
  12. Trish

    Trish Moderator Staff Member

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    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.
     
  13. Trish

    Trish Moderator Staff Member

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    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.
     
    Moosie, MEMarge, Woolie and 6 others like this.
  14. Valentijn

    Valentijn Guest

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    We need a "vomit" emoticon, stat!
     
    dannybex, Moosie, MEMarge and 7 others like this.
  15. Cheshire

    Cheshire Moderator Staff Member

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    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.
     
    Joh, Moosie, MEMarge and 8 others like this.
  16. Trish

    Trish Moderator Staff Member

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    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.
     
  17. Cheshire

    Cheshire Moderator Staff Member

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    And she kept talking about fake news. Oh the irony.
     
  18. Cheshire

    Cheshire Moderator Staff Member

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    4,675
  19. Joel

    Joel Senior Member (Voting Rights)

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    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.
     
    MEMarge, Invisible Woman, Jan and 6 others like this.
  20. Wonko

    Wonko Senior Member (Voting Rights)

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    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.
     

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