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.