Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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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. JamBob

    JamBob Senior Member

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    Don't know if anyone has already posted this but just saw on Twitter that TEDxBristol have just announced that Esther Crawley will be one of their speakers on November 2nd.

    Here's what's written about the talk:

    https://tedxbristol.com/speakers

    Esther Crawley is a Professor of Child Health at the University of Bristol with a Senior Research Fellowship from the National Institute of Health Research.

    She dedicates her waking hours to finding and delivering treatments for children whose lives have been devastated by Chronic Fatigue and ME, an illness that affects 1-2% of teenagers – that’s 10-20 children in a normal secondary school.

    Esther is the clinical lead for the Bath specialist Chronic Fatigue Syndrome/ME service for children based at the Royal United Hospital in Bath, the largest service of its type in the world - providing assessment and treatment for over 450 children and young people with CFS/ME each year. Chronic Fatigue Syndrome is a debilitating illness that causes chaos to peoples lives.

    Esther is passionate about trying to develop more effective treatments, and her research is world leading. But because of it, she has experienced harassment, threats and cyber stalking from a small group of activists who have dedicated their lives to try and stop her research. Esther and her colleagues who continue to practice in this area face an up-hill climb: research is slowed down as they deal with investigations and threats. Their patients suffer because clinicians and researchers wont work in this area.

    Esther's hard-hitting talk for TEDxBristol: Dare to Disrupt will explore why she has decided to continue with the research, despite the immense pressure she has been put under to stop. Her talks examines the difficult choices that many pioneers of medical research make - and the personal pressures, turmoil, threats and attacks that clinicians, scientists and researchers face when they choose to take a stand and do what is right, not what is easy.

    I dare to disrupt because ...
    We need to disrupt views of this illness.Those who are ill with CFS/ME do not have a voice - they are too unwell. We need to provide their voice and we need to speak up about this illness. Because we, as a community, as a society, as friends, as neighbours and as parents should look after children who suffer.
     
  2. Molly98

    Molly98 Senior Member

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    :jaw-drop::aghhh::cry::mad::bang-head:

    Jesus Mary and St Joseph!!!

    Is there no end to her antics!

    Would someone find this woman a new job?

    Tesco's checkout maybe where she can't do much damage.

    Asparagus packer?

    Camel herder in the Sahara desert?

    Anywhere, away from children and away from us :(
     
    ErdemX, Mary, sue la-la and 20 others like this.
  3. Countrygirl

    Countrygirl Senior Member

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    Her research is world leading??? :wide-eyed::bang-head: :lol:

    Delusional!

    I suppose Esther described her work as such to the author.

    If only we could find a way of getting the truth out there. I listened to her libelling us again today and now she is going to publicly play the martyr again with more untruths.

    Might be a good idea to collect the tweets today that refer to how she has treated the children and has inflicted distress on the families.

    How about she confesses that many who protest against her are world-renowned scientists? I bet her audiences don't know that.

    Any one feeling like writing a pamphlet with the outline of the truth to distribute? :mad:
     
  4. NelliePledge

    NelliePledge plodder

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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I was once a student at Bristol, now I`m embarrassed.
     
    Binkie4, ladycatlover, Orla and 10 others like this.
  6. Molly98

    Molly98 Senior Member

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    It does say on their Web page are you interested in becoming a speaker I wonder if there is anyone with good public speaking skills who could do a talk from the patients perspective and counter Crawley's story?

    @Jenny TipsforME your in the Bristol area, have you got any ideas on this?
     
    Boronia, ladycatlover, MeSci and 7 others like this.
  7. Countrygirl

    Countrygirl Senior Member

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    I missed that bit @NelliePledge

    It get's more ludicrous.

    Wonder if Esther would accept an invitation to participate in a debate with a proper researcher in front of an audience of her peers? :D

    Perhaps David Tuller would like to share a platform with her or Ron Davis or one of a host of other scientists?
     
    Last edited: Oct 25, 2017
    Mary, Boronia, ladycatlover and 11 others like this.
  8. NelliePledge

    NelliePledge plodder

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    I think there would be quite a queue. Dr Rowe no doubt would be up to challenging her which he more or less did in his CMRC presentation
     
    Boronia, BS3boy, ladycatlover and 5 others like this.
  9. Demepivo

    Demepivo Dolores Abernathy

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    Jen Brea is a TED fellow...Sure she won't be very happy at this....

    @Jenny TipsforME thought you should know...
     
  10. Molly98

    Molly98 Senior Member

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    I wonder if you have to be from the Bristol area to take part?
     
    JamBob likes this.
  11. justy

    justy Donate Advocate Demonstrate

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    @JenB has done a great Ted talk already, i wonder what she would make of this? It really is absolutely appalling.
     
    Demepivo and Molly98 like this.
  12. markielock

    markielock staying independent, one day at a time

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    looooool

    I don't think I have it in me to unpack all the implications made in that sentence. The conspiracy narrative that all the sick people want to kill the poor scientists trying to do them a favour continues.

    What I will say is: If you've actually done good, robust research then just let it speak for itself :rolleyes::rolleyes::rolleyes::rolleyes:.

    I may watch this, just in a vein attempt to try and understand what angle they're coming from exactly. I really do want to understand what the problem is and where this completely absurd and unnecessary drama is stemming from.
     
  13. Old Bones

    Old Bones Senior Member

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    Here's your answer, @justy , from Jen's Twitter account:

    Jen6.JPG
    Jen1.JPG Jen2.JPG Jen3.JPG Jen4.JPG Jen5.JPG
     
    ErdemX, Abrin, JaimeS and 31 others like this.
  14. lnester7

    lnester7 Seven

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    ok this is not a joke, I am serious, This person is not stable or in touch with reality. I think EC needs to be committed or in the least evaluated. This behavior, so much unreality is not normal, or narcissism or fraud or crazy. But ignorant cannot be an excuse anymore.
     
    ErdemX, Mary, Grigor and 9 others like this.
  15. Deepwater

    Deepwater Senior Member

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    IMHO it's simply coming from a desire to wrest back control of the narrative and all the poor suckers with this disease so her career isn't ruined. It always worked for them in the past, so the more she is challenged, the harder she plays the old victim-of-dangerous-activists card. I'm not a psychologist but as a simple human being looking closely at her body language during her talk today, it screamed out to me that she was lying quite deliberately. It's the shifty looks, head and eyes moving this way and yon to avoid sustained contact with the audience, and weird distracting hand movements. The eye shifting in particular reminded me so closely of a five-year-old I once had to talk to about the theft of another child's favourite hair bobble, as she suddenly looked up to some invisible object hovering in the sky to her right and told me it was a gift from her grandmother. Trump does it all the time too.

    I'd also say she was nervous - very nervous at points.

    I have to hand it to her, though - she is brilliant. Positively flirts :heart::bouquet:with the audience.

    By the way, it particularly creeped me out :nervous: the way she used the completely unverified wishes of "the children" (said in that saintly tone:angel:) to excuse all her bad science. Actually, it's not really science at all, is it? If I were feeling kinder I might call it play science.

    More seriously, yes I agree that at this point we need to have a fact sheet we can hand out - or even start putting together a dossier - to counter this campaign of utter disinformation.
     
    ErdemX, Jo Best, ladycatlover and 9 others like this.
  16. Skycloud

    Skycloud Senior Member

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    She's digging herself deeper into the hole in which her research will be buried by history (and biomedical research) Can we have a digging emoticon?
     
    Boronia, MeSci, simeyss and 4 others like this.
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the Lightning Process trial has changed things. Medical colleagues saw it in the papers and heard the radio broadcasts and the pure absurdity of it came across. I suspect there is no way back now. The vexatious activist story is not going to run for very long.
     
    ErdemX, ukxmrv, Boronia and 36 others like this.
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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  19. markielock

    markielock staying independent, one day at a time

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    Dangerous activists of the ME/CFS community. I think most of us would get PEM just thinking about how we could be dangerous, let alone carrying out any dramatic terrorist actions :rofl:. But wait, why are some of us so dangerous in the first place? It's just hilarity at its finest.
     
    Mary, Boronia, Grigor and 8 others like this.
  20. Scarecrow

    Scarecrow Revolting Peasant

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    Apart from being quite simply horrified at Esther's antics, I'm also oddly disappointed. I saw her at the first CMRC conference and she struck me as someone who would move deftly toward a biological understanding. Whether anyone would have forgiven her for the harm already caused was another matter. I would have..........but it's a very long time since I was a young person with M.E.

    You live and learn - or not, as the case may be.
     
    Boronia, justy, moosie and 7 others like this.

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