Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. SOC

    SOC

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    I agree, but part of it is that some of the speakers are getting right up in their faces. Most people don't respond well to being publicly criticized, especially if they feel they're not personally responsible for the behaviors being criticized.

    The individuals at the table seem to be wanting to help -- if somewhat ineffectively. I'm not sure how they can respond to some of these public comments. In the moment, anyway.
     
    usedtobeperkytina and CJB like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    I wonder if she knows what "diddling" means as slang ... still appropriate in the context, but makes me giggle :p
     
    jimells likes this.
  3. SOC

    SOC

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    Go Jenny! :balloons: Absolutely brilliant presentation!
     
    Valentijn, waiting and BEG like this.
  4. BEG

    BEG Senior Member

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    Tremendous comments from Jenny Spotilla. Placards very effective.
     
    Nielk likes this.
  5. waiting

    waiting Senior Member

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    Is that Andrew? (Missed the intro).
     
  6. maddietod

    maddietod Senior Member

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    Yes! Andrew is on!
     
  7. maddietod

    maddietod Senior Member

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    Well done Andrew!!!
     
  8. waiting

    waiting Senior Member

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    Excellent points, Andrew.
     
  9. SOC

    SOC

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    Another clear, pointed presentation. :) Great work, Andrew!
     
  10. LaurelW

    LaurelW Senior Member

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    Good job, Andrew!
     
  11. Nielk

    Nielk

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    Yeah Andrew. I'm proud of you. Very well spoken and polite. A great representative for us. Much appreciated.:thumbsup:
     
    Valentijn and SOC like this.
  12. Nielk

    Nielk

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    It was so effective and clear. Thank you Jenny.:thumbsup:
     
  13. jimells

    jimells Senior Member

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    Running out the clock is a time-tested technique for gving non-answers that appear to be useful. Ever watch a congressional committee meeting on C-SPAN? Those people are expert at appearing to say something while actually just lip-flapping...
     
    BEG likes this.
  14. SOC

    SOC

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    Oh yeah, this is a really helpful presentation for the US patient population.
     
    BEG likes this.
  15. maddietod

    maddietod Senior Member

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    That last one confused me. Are there ME criteria (link?) that are different from the CFS Canadian criteria?
     
  16. SOC

    SOC

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    Courtney Miller did a great job, too. Wonderful conclusion to the public testimony. :)
     
    Nielk likes this.
  17. SOC

    SOC

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    Don't get me started. :rolleyes:
     
  18. Hope123

    Hope123 Senior Member

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    Yeah, if people really want to read all the definitions, here's a Jason 2012 article comparing ME definitions. Keep in mind though that the Canadian and ICC are the most recent.

    http://www.ashdin.com/journals/ACPSF/K110601.pdf
     
  19. Valentijn

    Valentijn Activity Level: 3

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    Who are these "ME experts" that approve funding for studies?
     
  20. SOC

    SOC

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    Doesn't it sound like a series of vicious circles? We can't get funding because there are not enough proposals, but there's not enough proposals because there's no funding. We can't get a good team of experts evaluating proposals because there's so few researchers that the same people who want to propose research would be the same ones evaluating the research. :thumbdown: But we can't get more researchers into the field if there's no funding.... It just keeps going around and around and around....
     

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