CFSAC Goings and Comings

There are a number of CFS Advisory Committee tidbits to share, with more goings than comings.

Barbara James, the CFSAC Designated Federal Officer, is retiring from HHS at the end of April. No word on who will replace her. It’s possible that Dr. Nancy Lee will return, at least temporarily, while a new DFO is trained.

Alaine Perry, ex officio from the Center for Medicare and Medicaid Services, has resigned from that position on CFSAC. No word on who will replace her. This is a real loss to CFSAC, as Perry has brought her own experience as an ME/CFS patient to her role on the committee.

Dr. Mariela Shirley, ex officio from NIH, is leaving the Office of Research on Women’s Health and returning to the National Institute on Drug Abuse. This likely means her departure as ex officio, and as chair of the Trans-NIH ME/CFS Working Group. Dr. Susan Maier may return to the role or a new person may be appointed. This is not great timing for turnover given the imminent publication of the P2P report, and what will hopefully be new engagement by NIH in increasing ME/CFS research.

Dr. Gary Kaplan‘s term on CFSAC expires on May 15th. There has been no request for nominations, and given the turnover in the DFO such a request seems unlikely. This is speculation, but it’s likely that his term will be extended or renewed.

Finally, the deadline for nominations for the non-voting liaison positions has passed. The current appointments expire soon, and there is no word on the timeline for new appointments or extension of the current terms.

This is a lot of upheaval under any circumstances. However, the committee will likely meet in June, and a CFSAC Working Group has been considering the implications of the IOM report. CDC is revising its Toolkit, and we are still waiting for an official response from HHS to the IOM recommendations. The impact of CFSAC turnover during this critical time is hard to predict.

This entry was posted in Advocacy and tagged , , , , , . Bookmark the permalink.

3 Responses to CFSAC Goings and Comings

  1. Joe Landson says:

    Odd that Dr. James was just greeting us all at the IOM report briefing in February, and now is leaving.

  2. This upheaval of people leaving and positions not being filled is a great worry. The timing is terrible, as we await P2P report.

  3. Anonymous says:

    April is nearly over and I don’t think we have had a formal announcement about Ms. James’ departure, her replacement (even temporary) and no information about when the next CFSAC meeting will take place.
    Since the next CFSAC meeting is supposed to be an in-person meeting, patients and advocates need plenty of lead time to plan to try to attend.
    And HHS has said nothing further about what it plans to do regarding the IOM report….
    Why such radio silence from HHS?

Comments are closed.