1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

Discussion in 'PsychoSocial ME/CFS News' started by Andy, Oct 25, 2017.

  1. Lilpink

    Lilpink Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    497
    Assuming she isn't lying about it: see attached screenshot. The other information relies on Wiki and other 'in the public domain' information ... so it's as accurate as it's accurate. (Ie I haven't been able to establish if it's 100% accurate but can't see why it should be wrong).

    See this Vid: Screenshot (1).png
     
    ladycatlover and Valentijn like this.
  2. Lilpink

    Lilpink Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    497
    It all originates from her claims in the video. I was under the impression people had watched it and therefore understood the context of my posts.
     
  3. Valentijn

    Valentijn Moderator Staff Member

    Messages:
    1,529
    Likes Received:
    7,068
    Location:
    Netherlands
    A lot of us have trouble watching videos. Especially ones which might induce nausea or cause us to hurl objects at the screen :p
     
    Greebo, Nellie, Hutan and 15 others like this.
  4. Lilpink

    Lilpink Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    497
    I appreciate it's over and above the call of duty ;) :emoji_guardsman: but given I seem to be being cross questioned :emoji_eye: I kind of assumed it was from a positon of having seen the actual offending article. And very 'offending' it is, I grant you! :emoji_scream:
     
    ladycatlover, Jan, TiredSam and 3 others like this.
  5. Woolie

    Woolie Senior Member (Voting Rights)

    Messages:
    556
    Likes Received:
    3,969
    I just watched the clips that @JohnTheJack posted - thanks!

    It was every bit as bad as everyone said. But also not as good. She's just not very good as an orator. The talk is dull and she comes across as vague and waffly, the topic unclear. Something to do with kids and fatigue. I expect the audience is thinking "How much longer to go before the next talk?"

    The title "Professor" usually implies a person is a highly experienced orator and can explain complicated concepts in an entertaining and accessible way. But this probably isn't the case for medical Professors who probably don't do a lot of lectures.

    Does anyone know if the talk is being made available again publicly? Or has it been taken down permanently?
     
    Last edited: Nov 10, 2017
    MEMarge, Hutan, ladycatlover and 9 others like this.
  6. Woolie

    Woolie Senior Member (Voting Rights)

    Messages:
    556
    Likes Received:
    3,969
    Yea, but she's trying to paint a picture of threatening cyberstalkers watching her every move. Not much of a stalker this one, if s/he didn't even know Crawley's gender!
     
    MEMarge, ladycatlover, Jan and 9 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    220
    Likes Received:
    1,537
    don't know if you mean via Tedx (it disappeared shortly after the crawley bit), the phone-shot version
    as per the two parter posted on this thread, was available here
    https://pwme.uk/EC/Crawley TEDx.mp4
     
    Last edited: Nov 10, 2017
    MEMarge, Lidia, ladycatlover and 2 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    220
    Likes Received:
    1,537
    Bristol business news:
    http://www.bristol-business.net/ted...he-breadth-of-the-citys-ideas-and-innovation/
    "
    Also speaking yesterday was Esther Crawley, professor of Child Health at the University of Bristol, who is passionate about developing more effective – but controversial to some – treatments for children whose lives have been devastated by Chronic Fatigue and ME.

    She explained why she decided to continue with the research, despite the immense pressure she has been put under to stop, and what drives medical research pioneers in the face of threats and attacks."

    medical pioneer? give me strength.
     
    Hutan, EzzieD, MEMarge and 11 others like this.
  9. Woolie

    Woolie Senior Member (Voting Rights)

    Messages:
    556
    Likes Received:
    3,969
    Yea, I meant via TEDx. I thought it was too much to hope that the TEDx event organisers might have seen fit to lose the talk permanently.
     
    MEMarge and ladycatlover like this.
  10. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    776
    Likes Received:
    3,956
    So if a "medical pioneer" decided to research whether sipping mercury for breakfast helped cure ME, and then still persisted with that research despite being told how dangerous it was to patients, then I think what actually drives them to continue their research is ... sheer bl**dy arrogance, and not giving a sh*t for anyone else but themselve.
     
    Webdog, large donner, Trish and 11 others like this.
  11. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    776
    Likes Received:
    3,956
    And there she does it again - painting herself as the wistful would-be-hero, following in the footsteps of her heroic forebear, fighting the forces of evil.
     
    MEMarge, Trish, EzzieD and 8 others like this.
  12. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    344
    Likes Received:
    1,695
    The worst part is its us the patients that are her evil, we keep banging her head on reality. In a way she is like a faith healer who refuses to believe in science. She is saving us from the devil, if we don't believe we are channeling evil and need an intervention or seance (or to be confined and tortured against our will to beat out the devil)... :emoji_face_palm:
     
    Viola, large donner, EzzieD and 10 others like this.
  13. Solstice

    Solstice Established Member

    Messages:
    24
    Likes Received:
    168
    She is going where no sane person would go though.
     
    MEMarge, Viola, Greebo and 5 others like this.
  14. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    236
    Likes Received:
    1,904
    I think I would wish to keep quiet about family links to SOE.

    It immediately conjures up images of secret, underground networks working by clandestine means to assert control.

    But of course that has no connection to the history of ME.
     
    MEMarge, Barry, Jan and 3 others like this.
  15. Lilpink

    Lilpink Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    497
    Magical thinking par excellence.
     
  16. Lilpink

    Lilpink Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    497
    :rofl: :laugh:
     
    MEMarge, chrisb, Barry and 2 others like this.
  17. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    545
    Likes Received:
    3,480
    I got asked to look over an e-mail someone wanted to send to Ted, so am finally forcing myself to sit through this talk. Notes as I got through.

    Crawley TedX01

    This Tedx video is hilarious. Who told her to speak like that? LOL at her facial expressions too... it's like badly done pantomime.

    3:00- "We're making progress. 10 years ago people said to me that it didn't exist in primary school children."​

    Who said that? What would that mean? That no primary school children suffered from disabling fatigue for more that six months that could not be accounted for by an exclusionary diagnosis?

    LOL again at the expressions.

    re the stuff (3:30-4:00) about the severity of infection being more important that the sort of infection for triggering CFS in children: I don't remember the research on this. Anyone know what she's referring to there?

    LOL what's she doing with her hands now? This so looks like she got 20 minutes with a rubbish body language expert, and did a bad job of following bad advice.

    7:00 - "And if we do that we can increase a child's chance of recovery from less than 10% to more than 60%. A six fold increase." ... "But I don't think that it's good enough that 40% of teenagers are still ill after six months."​

    Crawley TedX02

    0:44 - "I couldn't put a picture of a patient up today, because I was really worried about them being attacked, like I am attacked. It is the nature of doing research into Chronic Fatigue Syndrome, it is the research environment. Medical students are told not to go into this area. Researchers are told not to do research. Researchers who do research leave. This is an e-mail that I got a few years ago. It was used on the front cover of the Sunday Times, to discuss the research environment for Chronic Fatigue Syndrome. I still laugh at the idea that someone was going to cut my balls off. Does make you wonder."​

    2:50 - There's a rather misleading description of the controversy around SMILE here, but I don't have time to transcribe now. Then moves on to talking about anti-vaccination people sending "specific, personalised death-threats" (as opposed to the mere anger she has to try to spin as death threats?)

    7:05 - "We need to do that because those with Chronic Fatigue Syndrome, particularly children with Chronic Fatigue Syndrome, don't have a voice. They're too ill. So we need to be their voice."​

    By the end of that, I wasn't finding it funny, no matter how ridiculous her expressions were. What an appalling piece of propaganda. Has anyone from the ME Association or Action for ME commented on this? How can Action for ME think that it is acceptable to continue to try to get funding for MEGA when it Is being run by Crawley?

    The bit about 'her' e-mail is clearly BS. I don't see how TedX can defend releasing this video if they've been informed of how she has misrepresented things.

    From Mat Gill, the creator of that Sunday Times Magazine cover (via @JohnTheJack )

    "This is a photo illustration I created for an article that was published in The Sunday Times Magazine in 2013.

    I created it using the wording from threats Simon Wessely had received at the time (it certainly is disturbing!)

    Prof Crawley contacted me asking if she could use the image in her presentations. I gave her permission in good faith.

    I’ve read your tweets and responses about Prof Crawley’s presentation (I had a quick google when your email arrived). I was a bit concerned about how she presented the image - the context of the image is clearly important and not disclosed! Ive dropped her an email asking her to be clear in her presentations that the image was an illustration published in the ST Magazine."
    re her claims on recovery, this is from the TedX requirements for scientific claims:

    "• Be backed up by experiments that have generated enough data to convince other experts of its legitimacy."

    For the recovery claims, presumably that's a reference to FITNET? There are problems with that study, and it's just one study.

    re SMILE, she kept things vaguer, but that would seem to fall closer to outright pseudoscience:

    http://storage.ted.com/tedx/manuals/tedx_content_guidelines.pdf

    Ted say: "One of my speakers broke these rules. Now what? If you suspect that a speaker at your event veered outside these guidelines, let us know about it. We will review the content together and make a decision about how to proceed. We may place an overlay on the video in YouTube alerting viewers that the content is outside TED’s standards. Alternatively, if the talk raises issues worthy of a broader debate we may move the talk off of YouTube and onto our own site, where we can provide more context and offer a broad array of conversation tools. And, in extreme cases, we reserve the right to remove the video altogether."

    I think that there's good reason for TedX to pull this presentation, and if Crawley can't even fulfil their lax criteria for accuracy, that's really not a good sign for her.
     
    Last edited: Nov 15, 2017
    MEMarge, JohnTheJack, Hutan and 16 others like this.
  18. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    344
    Likes Received:
    1,695
    I woudln't nitpick, mention her claims (specific ones) which are ridiculous, the image was a fake and the therapies she proposes harms patients and/or is quackery.

    Edit: And it may be worth mentioning her institution claims no record of any harassment
     
    Last edited: Nov 15, 2017
    Jan, Wonko, EzzieD and 7 others like this.
  19. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    545
    Likes Received:
    3,480
    Oh, that's all you want us to prove... keep it to the bare minimum?! I agree that it's worth focussing on the strongest points, but there's a lot of uncertainty, even around something like the Lightning Process, never mind FITNET. Going in with assertions that they harm patients and/or are quackery would be too strong imo. If that argument were settled we'd be in a different place. I don't know if it's sensible to go into the problems around FITNET/SMILE at all... I doubt anyone at Ted would feel up to assessing that work. They don't have a great track record with rigorously checking the claims in their videos, even at main Ted, never mind Tedx.
     
    Wonko, EzzieD, Skycloud and 4 others like this.
  20. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    344
    Likes Received:
    1,695
    I see, and in that video she doesn't talk about treatments at all. Since you know how to tailor to the audience your sending to thats ace.
     
    MEMarge, Wonko, Valentijn and 2 others like this.

Share This Page