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Esther Crawley TEDxBristol Disrupting Your View Of ME

Discussion in 'General ME/CFS News' started by JamBob, Oct 25, 2017.

  1. ukxmrv

    ukxmrv Senior Member

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    Have you had a reply to your email?
     
  2. Jo Best

    Jo Best Senior Member

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    With apologies as posting in haste so haven't read the whole thread, had just spotted this blog on Twitter and thought it includes a nice validation of the worth of using these opportunities on social media to educate the unwary.
    https://openworking.wordpress.com/2017/10/29/better-science-through-better-data/
     
    Chezboo, moosie, Orla and 9 others like this.
  3. NelliePledge

    NelliePledge plodder

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  4. altered beast

    altered beast

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    Thanks also
    I am so glad someone is taking a proactive approach.
    Utterly dismayed that the ME Charities response so far is to pretend this isn't happening.
    This surely will be by far the biggest non medical audience EC has had for her fabrications and distortions on this subject.
     
    Chezboo, Webdog, anni66 and 1 other person like this.
  5. Jo Best

    Jo Best Senior Member

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    :lol::smug::woot:
     
    ladycatlover likes this.
  6. Jo Best

    Jo Best Senior Member

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  7. Demepivo

    Demepivo Dolores Abernathy

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    FWIW I've got some Tweets written & saved via Buffer to go live just before EC's talk
    >using hashtags #TEDxBristol & #DaretoDisrupt which the organisers are suggesting.

    TED tweets.JPG
     
    MEMum, hinterland, rosa and 8 others like this.
  8. Forbin

    Forbin Senior Member

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    Hope she's boned up on this...

    [Takeaway finding: The majority's relationship to the minority.]

     
  9. Joh

    Joh Inactivist

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    Does anybody know when EC's disruptive talk will be online? I remember it took around six months for Jen's TED Talk to be available.

    I know we agreed best not to click on it and put a video up here instead, just wanted to know how long it might take. :)
     
    Molly98, ladycatlover and Countrygirl like this.
  10. Jo Best

    Jo Best Senior Member

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    It wouldn't surprise me if she's using a PR company, but she has the backing of the UK Science Media Centre, which proudly reported its success in orchestrating the anti-patients/advocates media campaign of 2011. I believe the campaign was intended to silence criticisms of the PACE trial and EC's SMILE trial.
    http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf
     
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  11. Jo Best

    Jo Best Senior Member

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    Not a TED talk but this is retired UK paediatrician and internationally renowned expert in ME, Dr. Nigel Speight, speaking at a conference in Brussels this year about his experience with children with ME / CFS and how they and their parents are treated.

     
  12. Jo Best

    Jo Best Senior Member

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    Worth noting that Nigel Speight is viewed by the current establishment as the 'disruptor' on the subject of children and young people with ME. The GMC placed restrictions on his licence to practice last year, subsequently lifted: http://forums.phoenixrising.me/inde...r-nigel-speight-gmc-drops-restrictions.47333/

    Also relevant to the subject of the TEDxBristol talk, in their statement about the GMC action against Nigel Speight, ( http://www.investinme.org/IIME-Newslet-1604-NS999.shtml ), IiME Research referenced two accounts, one written by the parent of a young son with ME ( http://ldifme.org/a-day-with-a-son-with-m-e/ ) one by the parent of a young woman with ME ( http://www.investinme.org/mestory1010.shtml )
     
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  13. Nielk

    Nielk

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    Last edited: Nov 2, 2017
    ukxmrv likes this.
  14. Jo Best

    Jo Best Senior Member

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    Invest in ME Research has put David Tuller's #IIMEC12 pre-conference dinner presentation on youtube.



    Thanks @Grigor for tweeting.

     
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  15. Alvin2

    Alvin2 If humans were rational...

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    Common in children, i doubt it, sounds like she wants to increase the market so she can "help" more children and obfuscate the real disease. Gotta protect herself from reality somehow, there are too many people doing research on the actual disease mechanism and looking for medications to cure it. This must be stopped before it gets out of hand, it can only be psychosomatic and thats that
     
    MEMum, simeyss, Orla and 4 others like this.
  16. Jo Best

    Jo Best Senior Member

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  17. anni66

    anni66 mum to ME daughter

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    Can someone tweet to #scidata?
     
    Jo Best and Molly98 like this.
  18. anni66

    anni66 mum to ME daughter

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    Jen Brea is well briefed
    Check out @jenbrea’s Tweet:
     
  19. Dolphin

    Dolphin Senior Member

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  20. Alvin2

    Alvin2 If humans were rational...

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    Can't put cat back in bag so must prevent it getting out... [facepalm]
     

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