Thursday, November 8, 2012

October CFSAC Review

Another CFSAC Done Gone

October 6th, 2012
Jennie Spotila J.D.

The CFS Advisory Committee held its second meeting of the year on
October 3-4, 2012. Last time, I organized my summary around the good,
the bad, and the WTF moments. This time, I am organizing around the
discussion themes. Overall, I felt this meeting was more substantive
than in the past. There were even hints of introspection and data
driven discussion.

Agency Updates

Assistant Secretary Dr. Howard Koh attended the opening of the
meeting, and provided an update on the Department's efforts since the
last meeting. I was watching the meeting via webcast, and my feed
froze during Dr. Koh's comments. However, the portion I did see
contained nothing new. Dr. Koh did not provide any details on the Ad
Hoc Working Group beyond what we already know. Unlike previous
meetings, he did not take questions from the members. Although he said
"the committee has gotten stronger," he did not announce the
appointment of a new member to replace Dr. Rose. The committee bylaws
require vacancies to be filled within 90 days, so the failure to
appoint a replacement is a violation of the bylaws.

Both the FDA and Social Security Administration gave substantive
presentations to the Committee. In my opinion, this was the high point
of the meeting. Both Dr. Sandra Kweder (FDA) and Arthur Spencer (SSA)
provided detailed information about their agencies and CFS related
data. Dr. Kweder reported on the status of nine investigative new drug
applications for CFS. Mr. Spencer provided disability data that the
committee has been requesting for years. The overall approval rate for Social Security disability among cases where CFS is the primary diagnosis is 21%, in contrast to a national overall rate of 30%. I'm
looking forward to seeing the slides from both these presentations
because there was a lot of good information in them.

NIH and CDC also gave detailed updates. Dr. Susan Maier (NIH) reported
that several new members were added to the Trans-NIH ME/CFS Working
Group, including Dr. Harvey Alter. It's very good news that Dr. Alter
is staying involved in CFS despite the end of XMRV. Dr. Maier also
provided (for the first time) data on the acceptance rates for
CFS-related grant applications. The overall success rate is 25%, and
in FY2012 the success rate is 18%. These rates are higher than the
overall rate across NIH. Most of CDC's report was focused on various
education initiatives including CMEs offered through Medscape and CDC,
as well as video of patient vignettes for the MedEd Portal that will
be finished next year.

The full post can be found here:
http://www.occupycfs.com/2012/10/06/another-cfsac-done-gone/

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