1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

CFSAC meeting Oct 3-4, 2012

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

  1. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    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

    Messages:
    6,527
    Likes:
    9,680
    Amersfoort, Netherlands
    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 Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Go Jenny! :balloons: Absolutely brilliant presentation!
     
    Valentijn, waiting and BEG like this.
  4. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    Tremendous comments from Jenny Spotilla. Placards very effective.
     
    Nielk likes this.
  5. waiting

    waiting Senior Member

    Messages:
    216
    Likes:
    245
    Is that Andrew? (Missed the intro).
     
  6. madietodd

    madietodd Senior Member

    Messages:
    2,479
    Likes:
    1,733
    East Coast, USA
    Yes! Andrew is on!
     
  7. madietodd

    madietodd Senior Member

    Messages:
    2,479
    Likes:
    1,733
    East Coast, USA
    Well done Andrew!!!
     
  8. waiting

    waiting Senior Member

    Messages:
    216
    Likes:
    245
    Excellent points, Andrew.
     
  9. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Another clear, pointed presentation. :) Great work, Andrew!
     
  10. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    Good job, Andrew!
     
  11. Nielk

    Nielk

    Messages:
    5,273
    Likes:
    5,292
    Queens, NY
    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

    Messages:
    5,273
    Likes:
    5,292
    Queens, NY
    It was so effective and clear. Thank you Jenny.:thumbsup:
     
  13. jimells

    jimells Senior Member

    Messages:
    472
    Likes:
    707
    northern Maine
    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 Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Oh yeah, this is a really helpful presentation for the US patient population.
     
    BEG likes this.
  15. madietodd

    madietodd Senior Member

    Messages:
    2,479
    Likes:
    1,733
    East Coast, USA
    That last one confused me. Are there ME criteria (link?) that are different from the CFS Canadian criteria?
     
  16. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Courtney Miller did a great job, too. Wonderful conclusion to the public testimony. :)
     
    Nielk likes this.
  17. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    Don't get me started. :rolleyes:
     
  18. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    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

    Messages:
    6,527
    Likes:
    9,680
    Amersfoort, Netherlands
    Who are these "ME experts" that approve funding for studies?
     
  20. SOC

    SOC Senior Member

    Messages:
    5,362
    Likes:
    6,424
    USA
    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....
     

See more popular forum discussions.

Share This Page