Thanks for the notes everyone! Pre-occupied by other stuff at the moment and missed this talk. Some quick comments.
1) Disappointing that they are still only doing a one-day test. I have a good inside source saying that even if they did the 2-day test on only a percentage of people at only a few of the sites, the results would still be worthwhile to pursue. I say we continue to keep asking them to consider the 2-day test.
No matter how low the AT is for CFS patients on a 1-day test, this is also seen with other ilnesses and severe deconditioning. The unique part is for many CFS patients, in the 2-day test, the value declines further. Patients with deconditioning or other illnesses -- the AT increases or stays about the same on the 2nd day.
2) I'm glad they're studying homebound groups. This is in large part due to patient advocacy pressure and stories and resulted in CFSAC recommending specifically studying the epidemiology of the severely ill in Oct. 2012. The other CFSAC recommendation that no one has acted on though is studying and monitoring any possible clusters of CFS.
3) It would be good to see if the money from DHHS for IOM can be re-allocated to NIH but not sure how to do this.
4) I have been visiting with various local Congressional offices in my area. $6 million was viewed by the staff in those offices as "decimal dust" in one staff's words -- e.g. it's practically NOTHING in the world of US gov't spending. We do need to work in a well-coordinated way to get funding for CFS research.
5) Some of the findings are somewhat contradictory to what was found earlier. Several studies, including a WPI one looking at cytokine abnormalities, found ELEVATED rather than depressed IL-8.