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Dr Grobstein's CFSAC testimony: CFS Patient Advocate blog

Ember

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Excellent testimony. I wonder if her closing comment will be heard:
Because the definition issue is an agenda item on the afternoon of the second day, I think it is important that everyone who provides testimony in any form include at least a simple statement that both the empiric and Fukuda definitions are not acceptable definitions, and that patients support the Canadian and International Consensus definitions.
 

Sasha

Fine, thank you
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Excellent testimony. I wonder if her closing comment will be heard:
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.
 

Ember

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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.
 

Ember

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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?
 

Ember

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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.