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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. chrisb

    chrisb Senior Member (Voting Rights)

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  2. JohnTheJack

    JohnTheJack Established Member (Voting Rights)

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    Yes, it was just deleted from Youtube for copyright reasons.
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks for letting us know. Downloaded a copy now.

    Has anyone got a reply from TEDx Bristol about Crawley misrepresenting that slide? Not a good look if they're more concerned about protecting their copy-right than the accuracy of the claims made in their talks?

    Although... TEDx was in the title, so maybe it was automatically flagged by the TED organisation?
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Bristol Uni PR on the TEDx talk.

    http://www.bristol.ac.uk/ccah/news/2017/esther-crawley-tedx.html
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Dare to Disrupt :emoji_face_palm:
    She wants a license to abuse patients with lies, quackery and harmful treatments and her institution believes in her and supports this :emoji_face_palm:

    I don't really care if its out of ignorance, stupidity, blind trust or any other reason, this is unacceptable. :emoji_rage:
     
    Last edited: Dec 2, 2017
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  6. TiredSam

    TiredSam Moderator Staff Member

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    Those who are ill with CFS/ME most certainly do have a voice. They have been trying to make it heard for decades. Esther and Simon have been doing everything they can to make sure it is not heard, and that the voice they provide is heard instead. All they have to do is shut up and get out of the way so that ME sufferers' voices can be heard loud and clear. The SMC's role in ME is to make sure the sufferers' voices aren't heard ffs.
    EC doesn't even see severe sufferers, she studies children whose parents have said in a telephone questionnaire that they are tired. What the f. does she know about ME sufferers who are too ill to speak, she behaves as if they don't exist, and now she claims to talk on their behalf?
     
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  7. Allele

    Allele Senior Member (Voting Rights)

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    See, you ME patients are so confused and angry for no reason, here we are doing what you asked--giving you a voice--and you're complaining?
    You lot are never satisfied! Here we are hijacking your legit narrative to make it look like we're helping you right where it counts and
    all you can do is harass and threaten! Bunch of ingrates! Look what WE have to put up with! And still we carry on, because we care. We really really care. I deserve a medal for this selfless service. Oh look! I got one!
     
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  8. Adrian

    Adrian Senior Member (Voting Rights)

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    I don't think people with ME have a very loud voice in that is it hard to be heard in the media. Although there have been a limited number of good stories over the last few years,

    If, however, as Crawley asserts that people with ME don't have a voice the answer is not to speak for them without listening to them. But rather to enable people to be heard. The idea of a doctor speaking for patients smells of the old paternalistic attitude of the medical profession where they think they know best and ignore patients.
     
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  9. Allele

    Allele Senior Member (Voting Rights)

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    Positively reeks! [​IMG]
     
  10. large donner

    large donner Established Member (Voting Rights)

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    One minute we talk too much and "harrass" them the next minute we dont have a voice and need them to speak for us, I wish they would make up their mind.

    We are certainly ill but put most of us on a stage to debate her and we'll show you what our voice can do.

    One final thing, if we don't have a voice why not just answer our FOIs in writing and legitimate written questions.
     
  11. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    For a some time now I've been following the blog of Wendy, a lovely lady who has early onset dementia. She is very involved with dementia research. Patients are treated with respect, and researchers involve them. I was particularly taken with one of Wendy's recent blog posts.
    https://whichmeamitoday.wordpress.com/2017/11/22/british-psychological-society-event/

    Why can't we be treated with respect and involved as dementia patients are?
     
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  12. Trish

    Trish Senior Member (Voting Rights)

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    If dementia was called chronic forgetfulness syndrome and everyone kept saying, 'I get forgetful too, all you have to do is a few brain training exercises and have a few sessions of CBT.'
     
  13. Valentijn

    Valentijn Moderator Staff Member

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    We are, by the real researchers and academics.

    The problem with public perception might be due to "chronic fatigue" sounding trite, but the abuse we get from other researchers and academics is solely attributable to their personal biases and self-interest.
     
  14. Forbin

    Forbin Established Member (Voting Rights)

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    Curious, isn't it, that someone who gives a speech on the theme "Dare to Disrupt" would, at a subsequent presentation, stand by as a journalist was asked to leave for daring to ask a challenging question?
     
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  15. TiredSam

    TiredSam Moderator Staff Member

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    Pity she doesn't dare to be disrupted. Or interupted.
     
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  16. Allele

    Allele Senior Member (Voting Rights)

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    The irony here is worthy of some tweetage for those who do that....
    It's actually almost beautiful in its simplicity and pointedness.
     
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  17. Allele

    Allele Senior Member (Voting Rights)

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    Oh and an afterthought--I don't see Tuller's questions as particularly challenging.
    I think we ought to be referring to them as straightforward, which is what they are/were.

    He was as part of the public invited to "Dare to Disrupt" the narrative of ME, and he did exactly that, in a straightforward manner.

    This is such a ripe opportunity to bring to the greater public's notice that the narrative cannot and must not be coopted by people who operate at this level of bias.
     
  18. Forbin

    Forbin Established Member (Voting Rights)

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    Actually, I didn't mean challenging in the sense that he asked a tough question, I meant that he asked a questioned which literally challenged her (dared her) to explain her claim of libel.
     
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  19. Allele

    Allele Senior Member (Voting Rights)

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    Oh, yes, Forbin, I wasn't addressing this to you, I was saying it generally. I knew what you meant, and I think he's right to challenge her; I've just seen this "challenging question" phrase repeated on the interwebs and it struck me that it could have an unwanted nuance down the line. Even though it's 100% legit.
     
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  20. Snow Leopard

    Snow Leopard Established Member

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    Who is disrupting too?

    Disruption inception, I'm confused.
     

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