Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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25 Oct E Crawley speaking at Better Science Better Data event......

Discussion in 'General ME/CFS News' started by NelliePledge, Oct 17, 2017.

  1. NelliePledge

    NelliePledge plodder

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    Skycloud, MEMum, Orla and 15 others like this.
  2. NelliePledge

    NelliePledge plodder

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    Event is being live streamed through their Facebook page. I wonder if they are allowing opt outs
     
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  3. slysaint

    slysaint Senior Member

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    "
    14.30 – Keynote #3: How open should open data be?

    Esther Crawley, University of Bristol"

    "Esther also leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults. The epidemiological work uses the Avon and Longitudinal Study of Parents and Children (ALSPAC) and a large cohort of patients to study the causes and different types of CFS/ME. Her team have developed expertise in delivering complex hard-to-do trials. "

    hard-to-do? Probably got this from asking the kids.
     
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  4. NelliePledge

    NelliePledge plodder

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    I wish the kids would tell her to stop and ignore her thoughts ever time she gets feelings about doing new trials
     
  5. Large Donner

    Large Donner Senior Member

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    There may be some warped truth in this. Who else could get grants to run SMILE etc. I think it fair to say if most of these trials were proposed to anyone with any sense it would be hard to do them because no one would back them.

    I really think Crawley talks corporate code. How she manages to get funding that to everyone else is scarce, in large amounts, is beyond chance. She is basically like the PR wing of companies like Coca Cola when they close of poor areas near villages in Africa to use up the scarce local water supply to turn it into a beverage than the locals cannot even afford to buy.

    Shes like the opposite of Robin Hood, or perhaps if she had enough food for 5000 people she could turn it into 5 loaves and two fish.
     
    Last edited: Oct 18, 2017
  6. Jo Best

    Jo Best Senior Member

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    It says she was also on the conference programme committee :eek:

     
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  7. slysaint

    slysaint Senior Member

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    I remember when I asked the question how she gets away with all the things she does and gets viewed as an expert,
    JE replied 'Because she is on committees'.........seems this is right.
     
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  8. Inara

    Inara

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    It seems she is one of these vassals with the order to do anything to "proove" ME (or any illness that disturbs) is "psychological"; one very common element of propaganda is declaring a fact as opinion and an opinion as fact, and labeling statements as "expert knowledge".

    "If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not the enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle." (Sun Tzu, The Art of War)

    I am therefore thankful for threads like this one.
     
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  9. RogerBlack

    RogerBlack Senior Member

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    I wholly disagree with this.
    I think she truly believes that what she preaches is truth, and that it's just that infidels do not understand the clear word of god handed down in the PACE et al trials.

    More seriously, she has a hypothesis which she deeply believes in and misinterprets and sidelines as unimportant contrary evidence.
     
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  10. Keela Too

    Keela Too Sally Burch

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    N.Ireland
  11. lnester7

    lnester7 Seven

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    How can all other doctors (myhill, KDM....) be reported and nobody has open an investigation for false claims to this woman??? Best thing the ME associations can do for the kids. This is just plain irresponsible.
     
  12. Jo Best

    Jo Best Senior Member

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    The UK General Medical Council has investigated complaints against Esther Crawley and it seems she has free rein to claim and do as she pleases. Even when the GMC finds a complaint justified they decide to take no action; for example, her claim that ME or CFS is different in children compared with adults, as reason for doing a trial of the Lightning Process in children before its safety and efficacay had first been tested in adults.
     
    Last edited: Oct 18, 2017
  13. Inara

    Inara

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    @RogerBlack
    My post doesn't necessarily exclude her believing what she says. Why are you so sure about that? I barely know her, that's why I ask.
     
  14. slysaint

    slysaint Senior Member

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  15. Keela Too

    Keela Too Sally Burch

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    You can also go there to "like" other people's questions. I've put one in, but it's still "awaiting review".
     
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  16. MEMum

    MEMum Senior Member

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    Go for it @slysaint
     
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  17. slysaint

    slysaint Senior Member

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    had to laugh when the list comes up with 2 'Lightning talks' just before ECs listing!
     
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  18. anni66

    anni66 mum to ME daughter

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    Cognitive dissonance personified
     
  19. NelliePledge

    NelliePledge plodder

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    Well if she was on the committee it was probably her idea to call em that she loves her daft titles
     
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  20. Sbag

    Sbag

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    If any of the other panel members have ever queried Crawley (and if anyone knows them) it would be worth seeing if they could be primed to ask some probing questions
     
    Skycloud likes this.

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