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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. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't, so am keen on getting suggestions on how to best address her talk. I'm stuck in a quandary, and I don't know what to advise. Which is frustrating... and Crawley has me feeling more than a little irritable about it all.
     
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  2. Alvin

    Alvin Senior Member (Voting Rights)

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    I can't offer much more, my mental functioning not being great these days but i believe her documented history is sufficient to make her look the harmful fool she is. Don't be afriad to mention a few things, even toss in a wikipedia reference.
    I think the mentioning of no record of harassment and fake evidence she presented will make a big impact on the reviewer. I assume they don't like being blatantly scammed
     
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  3. Valentijn

    Valentijn Moderator Staff Member

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    She's lying, there's no good evidence for most of her claims, and the TEDx talk was part of her campaign against ME/CFS patients and researchers who question her work.
     
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  4. Amw66

    Amw66 Established Member (Voting Rights)

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    She' s a scientist (?). The only way to deal with this is to counter narrative with facts and references.

    The claim re children is untrue - Dowsett + Colby researched school attendance as indicator for ME in 1990s, ( i think) and published a study on it.

    Most can be debunked in a similar way.

    The main difficulty is inferences as these are open to interpretation.
     
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  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I'm stating the obvious but for these people who have no knowledge in my opinion it is worth specifically addressing the claim about needing to be a voice for patients - like the charities aren't providing a voice - which whatever folks think about specific issues - the NICE guidelines review petition and overturning the recommendation demonstrates she is blatantly wrong there. Similarly Tymes Trusts work with families. Also maybe worth highlighting MEA statements about objections to the SMILE trial.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Exactly. Stick to the known facts, no hint of conjecture. They are more than adequate.
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    With serial liars, it can be extremely difficult to prove the lie, or that an untruth was told with the intent of lying, when taking any one instance in isolation. But the pattern of lying behaviour is often their undoing, because plausible deniability falls apart once an established pattern can be demonstrated. And serial liars seem completely blind to this, incapable of not giving themselves away by such patterns of behaviour - nature of the beast I suppose.
     
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  8. Lilpink

    Lilpink Established Member (Voting Rights)

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    This has been my point and raison d'etre for flagging her inconsistencies about her grandfather. In and of themself: who cares? But taken as a part of a much wider pattern and collected as that pattern to prove a principle they are very useful imo. If someone has the energy then it would be worth starting a terrier (with evidence) of her misdemeanours. Not, as I have been accused of being, in a 'stalking' sense, but as a means to illustrating the way in which she works. Given how brazen she is it shouldn't be that tricky.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't think anyone here accused you of 'stalking'! It is good to fact-check things, but given the sensitivities with this, it probably is worth being aware that any possible inaccuracies about family history are likely to be seen as less important than misrepresentations of studies/patient critics. We'll all have different views on what the best response is, and it can be hard to discuss this without sounding as if we're insulting people with different views, even if that was not the intent.
     
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  10. Lilpink

    Lilpink Established Member (Voting Rights)

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    Well it was definitely implied. Thankfully some people have grasped what I was trying to say but tbh if this forum is going to be as tricky as the other one please just boot me off. I don't have any available energy for this.
     
    Last edited: Nov 16, 2017
  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    If we're talking about the same post, I don't think that it was intended to be implied (and I didn't take that implication from it). I thought it was more about raising concern over how prejudices around CFS patients could affect how things are interpreted.
     
  12. Lilpink

    Lilpink Established Member (Voting Rights)

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    As it was sandwiched deeply inside a conversation about the pointlessness of the info I'd provided it was hard not to assume that was its intention/ implication. Made more ironic on later discovering that some people who were criticising the info hadn't actually watched the video..which is fine if people don't have the energy, but not fine it they're going to pontificate from a position of not having done so. The devil can usually be assumed to be residing in the detail. It's nice to see the concept is understood by some, but worrying when concerns about 'perception' over-ride useful evidence gathering. (Imo)
     
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    Your interpretation of the conversation is quite different to mine. I don't recall anyone saying your info was pointless, but instead thought there was a discussion about what points were sensible to focus on for advocacy efforts, and what might distract from our central concerns, or even risk back-firing. It's good to have all potentially useful info raised and discussed, but also, different people will have different views about what info is likely to be useful for effective advocacy, and it's good to openly discuss that too. I can see that it might be irritating for you to have people say that they didn't think info you'd spent time digging up was particularly useful, but that sort of thing is just inevitable imo. Lots of things I've thought were important/scandalous have been dismissed by others (edit - I've had lots of my ideas dismissed by others over the years, often rightly, but then I've also just had someone take an interest in a PACE concern I raised years back that other people dismissed). I don't think anyone meant to criticise you for your digging though. It's good to have different people doing different things, sharing different viewpoints, etc - even if there's inevitably some friction from it.
     
    Last edited: Nov 16, 2017
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  14. Lilpink

    Lilpink Established Member (Voting Rights)

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    Yes of course it is if it's handled evenly. Never have a problem with that.
     
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  15. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @Lilpink It seems you've become upset or indignant (?) at being called a stalker. That's a shame and unnecessary because I did not accuse you of being a stalker.

    These are all my relevant posts:

    Re: EC's grandfather and Oxford
    I then read your reasoning behind this line of discussion and said:

    and later, in response to @Esther12:

    That last quote is the only point in this thread where I can think that you concluded you were being accused of stalking.

    My only point was that it is about perception. Anyone can read anything on a public forum. I think it's possible that others may read this line of discussion and see it as akin to stalking. They may even wish to use for their own agenda, a small possibility. So it may risk looking stalkerish. To me? No. Do I think you are stalking? No.

    So I didn't accuse you of stalking.

    It is still not a detail that I personally think necessary to bother with; I think there are better aspects to concentrate on, though as I said before I see why you do. We just disagree on this point.
    :)
     
    Last edited: Nov 17, 2017
  16. Lilpink

    Lilpink Established Member (Voting Rights)

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    Well I'm glad that's sorted out. I would however (and this is a generalisable comment) ask that in future anyone who responds to very particular information on any thread does so from a position of having read / seen the relevant back story or at least holds their hands up and says 'hey I haven't read this.... but..' at least then we know where we stand.
     
  17. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I've just finished showing the videos of the lovely Esther's TEDx talk to my son. It's a very good illustration for a discussion about ME politics, depending on the points you want to get across and how deep you want to go. Thanks Esther!
     
    Last edited: Nov 17, 2017
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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    It is probably worth recording here the fact that @JohnTheJack mentioned elsewhere that the videos of the talk seem to have been disappeared. Although this might be considered an act of kindness, it is unfortunate that certain words used are no longer so readily available.
     
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  19. EzzieD

    EzzieD Established Member (Voting Rights)

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    The video is still at the link given in this post: https://www.s4me.info/index.php?thr...rupting-your-view-of-me.286/page-6#post-11328 . Probably just the copies re-uploaded to YouTube have disappeared.
     
  20. Valentijn

    Valentijn Moderator Staff Member

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    Might be due to a copyright violation, if TED claims to own the contents of talks.
     

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