How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
Discuss the article on the Forums.

Dr Grobstein's CFSAC testimony: CFS Patient Advocate blog

Discussion in 'General ME/CFS News' started by Sasha, Jun 12, 2012.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    11,167
    Likes:
    13,354
    UK
    WillowJ and Dolphin like this.
  2. SOC

    SOC Senior Member

    Messages:
    6,575
    Likes:
    11,143
    USA
    Well said, Dr Grobstein! Three cheers!:thumbsup:
     
  3. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,269
    Excellent testimony. I wonder if her closing comment will be heard:
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    11,167
    Likes:
    13,354
    UK
    I agree.

    When I read her text, it made me think it was a pity that the patients and others giving testimony couldn't coordinate in some way, so that they'd be sure that, as a group, the important things were all covered, and the very important things (such as the definition issue) were being repeated.
     
    WillowJ, Dolphin and Ember like this.
  5. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,269
    Who's giving testimony at this meeting?

    Written testimony had to be submitted by June 6. The agenda was posted, I believe, on June 8 (not by June 4, as promised). What's going on? If you wanted to mute input on the agenda topics, this would surely be the way to do it.
     
  6. Dolphin

    Dolphin Senior Member

    Messages:
    7,391
    Likes:
    8,365
  7. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,269
    On the other hand, the failure of CFSAC to meet its own deadline could just be gross incompetence on the part of a committee that apparently couldn't circulate the ME/CFS Primer in time for its members to read it or convene its meeting for a time when its Chair was free of other commitments.

    Patients were expected to adhere to timelines, of course. In a rather telling sequel to the discussion of the need for patient accommodation, cogent testimony was cut off without so much as a request for the speaker to conclude her remarks. Is anybody listening?
     
  8. Ember

    Ember Senior Member

    Messages:
    2,055
    Likes:
    2,269
    Unbelievably discouraging CFSAC meeting today. The committee members had barely read the ME/CFS Primer. They showed little or no understanding of the CCC, and the ICC was scarcely mentioned. That which isn't endorsed by the CDC seems to fall outside the realm of discussion. As the basis for a consensus process on case definitions, a paper (not circulated to committee members) by Lenny Jason and Beth Unger (among others perhaps) was promoted as superior to the CCC, the international consensus definition now included in the ME/CFS Primer.

    The ME/CFS Primer itself wasn't distributed before the meeting because the organizers didn't want the members prepared at the cost of duplicating the document in the meeting packages. They didn't think of using email.

    The agenda was apparently distributed by email two weeks before the meeting, yet the committee violated its own deadline by not posting it for the public in time for advocates to prepare their written testimony accordingly. As Dr. Grobstein points out, this failure impeded advocates' ability to focus their input on the topic of case definitions.

    The Chair wasn't present today, and Dr. Lee , acting as Chair, had to apologize for her limited understanding of Robert's Rules. The meeting lost its quorum before making any recommendation on case definitions. There was no time for sub-committee reports.
     

See more popular forum discussions.

Share This Page