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Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Jan 11, 2018.

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  1. Andy

    Andy Senior Member (Voting Rights)

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    Just announced on the AfME Facebook page
     
  2. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    Well that slip is most certainly telling.
    (My bold)
     
    Woolie, Allele, Jan and 15 others like this.
  3. strategist

    strategist Senior Member (Voting Rights)

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    Come on, don't fund Crawley. She's incompetent and will just delay real help for these children by publishing poor science.

    Plus you're making a laughing stock of yourself by funding someone who thinks the illness can be treated by telling it to stop.
     
    sea, Joh, Indigophoton and 26 others like this.
  4. Trish

    Trish Senior Member (voting rights)

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    This study gives me the horrors. Imagine Crawley having access to details of children with severe ME all over the country. And I thought she has said severe ME doesn't exist and re-diagnoses them with Treatment refusal syndrome or what ever other name she gives it. Aaaargh!
     
    Joh, Woolie, Allele and 21 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

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    Maybe AfME have been bottling out, and saying so behind the scenes, provoking the need to find alternative funding? They would hardly announce it that way of course.
     
    Joh, ladycatlover, Forestvon and 17 others like this.
  6. Barry

    Barry Senior Member (Voting Rights)

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    Presumably the donor would have to be made publicly known at some point?
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    Absolutely. Don't think I'd trust her with a hamster.
     
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  8. Bluesky

    Bluesky Established Member (Voting Rights)

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    it is rather scary crawley having list of severely ill children.
     
    ladycatlover, Wonko, Allele and 8 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Agree, except Crawleys idea of severe is not necessarily what is generally considered severe.

    "The £6,000 with which Action for M.E. funded this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering."

    maybe the donor found out/realised the funds were actually going to contibute to more suffering(?)
     
  10. Lilpink

    Lilpink Senior Member (Voting Rights)

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    It's the 'corporate' word that is ominous to me. It should be possible to find out just 'who' they are surely? Plus their vested interests... which can't be to improve life for children with ME as they'd steer as far clear of EC as it's possible to be...
     
    ladycatlover, Wonko, Allele and 9 others like this.
  11. Lilpink

    Lilpink Senior Member (Voting Rights)

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    As an animal lover... heaven's no!
     
    ladycatlover, Wonko, Allele and 5 others like this.
  12. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    It sounds like AfME may be changing their story on what the funding was given for. At one point they seemed to be suggesting it was given for Crawley's specific project rather than for "the alleviation of childhood suffering"
     
    ladycatlover, Woolie, Wonko and 11 others like this.
  13. Cinders66

    Cinders66 Established Member (Voting Rights)

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    It's £6000, piddling amounts whatever way.

    Very useful for them to be able to channel it into the essentially old AyME which folded due to struggling for funds. Helps to separate afme from Crawley with criticism of their connection.

    Anything AFME do outside "support" is pretty irrelevant. They don't change anything or want to or if they do want yo they're spectacularly ineffective
     
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  14. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    AYME folded not AfME but I think that is what you meant.
     
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  15. Cinders66

    Cinders66 Established Member (Voting Rights)

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    I've corrected it, yes I meant that.
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    Surely a good sign that they're placing greater distance between themselves and Crawley?

    It's a weird statement, but Action for ME aren't really known for clear and insightful communication.
     
    Joh, ladycatlover, Woolie and 19 others like this.
  17. Valentijn

    Valentijn Not a moderator

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    That's how I read it as well. Esther Crawley has become a toxic commodity. AYME folded into AfME without bringing her along, AfME stopped verbally supporting her research, and essentially disavowed SMILE when it was published. Now AfME is even withdrawing promised funding.

    It's not like money is falling from the sky, even for psychosomatic quacks, and with the amount of garbage Crawley is willing to churn out, she could probably use the funding for it. How often do researchers really say "Thanks, but I don't want or need more funding"? They don't - if they get more funding they expand the project to include more patients or more testing, etc. That would be especially useful in assessing severe patients who can't leave their homes, assuming the researcher is able to acknowledge that such patients exist :p
     
  18. Seven

    Seven Established Member (Voting Rights)

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    Agreed!!! also, would be nice, to keep in mind she is just a puppet for the BPS giants, she can be interchangeable, we need to expose the puppeteer also and follow the trail so she cannot be easily replaced while we have the dog by its tail.
     
  19. Inara

    Inara Senior Member (Voting Rights)

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    It just can't be true. :x3:

    It's not the first time I think I must be doing something wrong. So many people get so much money by offering crap. I just don't get the real dumb ideas...

    That was one of my first thoughts, too.
     
  20. TiredSam

    TiredSam Moderator Staff Member

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    I really hope this is just spin and bullshit to allow some face-saving, dressing up the fact that they've finally done the right thing and told Crawley where to shove it, in the best possible light.
     
    Last edited: Jan 11, 2018
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