What To Look For

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC in listen only mode: 1-866-500-6250, participant code: 9487727.


The full agenda has been posted, and I’ve put together some things you can expect and watch for at the meeting.

New Faces – You may recall that Dr. Jacqueline Rose resigned after the June 2012 meeting. Her replacement has been appointed: Rebecca Collier, RN. All we know about Ms. Collier is that she is a registered nurse, and that she nominated herself to the Committee in 2011. I’m looking forward to learning more about her at this meeting. This will also be the first meeting attended by the nonvoting liaison representatives from the CFIDS Association, IACFS/ME, and the New Jersey CFS Association. We don’t really know how the liaisons will be integrated into discussions, or how their expertise and perspectives will be considered.

Missing FacesDr. Ann Vincent recently resigned from the Committee for unknown reasons. Other missing faces will be those of many patients who regularly attend the CFSAC meetings. Most of the advocates I know are still recovering from the FDA meeting and are too ill to make the trip, myself included. The room may look a little empty.

Official Presence – For the past several years, Assistant Secretary for Health Dr. Howard Koh has briefly attended the CFSAC meetings to give an official welcome and review highlights of the Department’s work on ME/CFS. He is not listed on the agenda for this meeting. Instead, Principal Deputy Assistant Secretary for Health Dr. Wanda Jones will give the official welcome. Dr. Jones is well liked by patient advocates, so this is not necessarily a bad thing, but it will be concerning if Koh is stepping back from his involvement in the CFSAC.

Agency Actions & Accomplishments – In March, the HHS Ad Hoc Workgroup published its first report. There really wasn’t any news in that report, but I expect the Department will cite this as a significant accomplishment. I hope we will hear about the future plans for the Workgroup, and whether they will actually stimulate new programs for ME/CFS.

High Priority ListDr. Nancy Lee assured Public Citizen that the High Priority List would be fully discussed at this meeting. However, the current agenda allocates only 30 minutes for the approval of both the Priority list and the proposed list of organization websites. I honestly don’t know how there can be “full discussion” of the list in less than 30 minutes. I hope that Committee members will recognize that this is insufficient time, especially since public comment may reflect the varied opinions we have about the List. My own opinion on the High Priority List is here.

NIH Funding – As I said last week, NIH funding for ME/CFS research fell by more than 20% in 2012. Dr. Susan Maier is on the agenda for Thursday, and I am eager to hear what she has to say about the drop. I hope that CFSAC members will press for an explanation and for real change.

Case Definition – Last October, CFSAC recommended that the Secretary “promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.” Obviously, that meeting has not happened. We do know that NIH has started a case definition process, so I hope we will hear more about that. In addition, a group of advocates have asked DHHS to stop using the broken Fukuda definition and begin using the Canadian definition. Despite all of this activity, case definition is not on the agenda for the meeting. Has the Committee done any work on this since October? Will the Secretary authorize CFSAC to hold a case definition meeting? Its absence from the agenda does not bode well.

Q&A – For the first time, a combined 45 minutes has been designated for “Public Q&A.” This could be very interesting, because I know that advocates have dozens and dozens of questions for the CFSAC and ex officios at every meeting.  I have no information on how this will be conducted, but it seems likely that it will be similar to the way questions were collected at the FDA meeting. Audience members submitted questions on cards, and moderators selected questions to pose the panel. I heard a lot of grumbling after the FDA meeting that very few questions were answered, and that the tough questions were not selected. Advocates have said the same thing about CDC’s PCOCA calls. Will this be a similar procedure, or will we see something like “open mic”?

Time – The allocation of time on this agenda is very different from previous meetings. Public comment has been reduced by one hour, but 45 minutes of Q&A was added. Ex officio reports have been reduced by 30 minutes, and lunch increased by the same amount. There were 5 hours scheduled for presentations at the October 2012 meeting, but that has been cut almost in half for this meeting. The biggest change is the increase in Committee discussion time from 1 hour, 50 minutes in October 2012, to 4 hours, 15 minutes for this meeting. This change will be welcome if the Committee uses that time to explore issues in greater depth and formulate better recommendations.


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