CFSAC Vacancy: One Down

Within the last week, there has been a change to the CFS Advisory Committee roster. Dr. Jacqueline Rose, who joined the committee on June 13, 2012, is no longer a member of the committee.

Dr. Rose was described at the CFSAC meeting on June 13th as an anesthesiologist retired from the Veterans Administration, and as a CFS patient herself. Neither minutes nor video of the meeting has been posted to the CFSAC website, so I’m working on my own recollection of watching the meeting. Dr. Rose made no comments and asked no questions during the entire first day of the two-day meeting.

On the second day, Dr. Rose did participate in the discussion of how to arrive at consensus on the case definition. She was among the members who believed that existing definitions should be used as the starting point for creating consensus. At the end of the meeting, Dr. Rose was one of the members who was asked to return to the room in order to maintain a quorum for voting on recommendations.

While working on my series profiling new CFSAC members (here and here), I made several unsuccessful attempts to reach Dr. Rose to interview her as I have other new members. Her departure from the committee after less than one month of service is unexplained. Did Dr. Rose resign, or was she removed for some reason? When will the vacancy on the committee be filled? Will DHHS go through the usual process of soliciting nominations through a notice in the Federal Register? Will it be possible to find a replacement for Dr. Rose before the fall CFSAC meeting?

Membership on the CFSAC matters. The voting members are charged with making recommendations to the Secretary for Health and Human Services, and past recommendations have included the illness name, research funding, ICD-10 classification and other issues that directly impact the lives of CFS patients. The selection of members, and how those members serve the committee, is a significant piece of the committee’s effective functioning and patients are rightly concerned about these issues. Unfortunately, as seems to happen so often with CFSAC, the federal attention to the CFS community’s concerns is less than we would hope. I requested a comment about Dr. Rose’s departure and the process for replacing her from Dr. Nancy Lee, Designated Federal Official of the CFSAC, on July 9th and again on July 10th, but I have received no response.

Update, July 10th at 7:35pm – I received the following email from the CFSAC Support Team: “In followup to your phone call today, Dr. Rose sent us a letter of resignation from CFSAC a couple of weeks ago.  For further information on her resignation, it is best to contact her directly.” I have asked the CFSAC Support Team for information about the process for nominating a replacement. And I have been trying to contact Dr. Rose directly for several weeks, but will make another attempt based on the CFSAC response.

Update, July 16th at 3:20pm – A message to the CFSAC listserv on Friday, July 13th included the following: “Notice:  Dr. Jacqueline Rose has submitted her resignation as a member of the Chronic Fatigue Syndrome Advisory Committee.  The CFSAC team has begun the lengthy process to present another candidate for approval and appointment by the Secretary of Health and Human Services.” 

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5 Responses to CFSAC Vacancy: One Down

  1. Barbara Bell says:

    You wrote that she has CFS. Being on any committee would be too much for most CFS patients. Seems like CFSAC would be a stressful committee to be on, what with hammering from angry CFSers all the time and no support from the government for meeting goals. Perhaps she discovered her limitations at CFSAC. Perhaps her heart wrote a check that her body can’t cash. Just a guess. I’ve seen that happen plenty of times elsewhere.

    • Jennie Spotila says:

      It’s very possible, Barb. And I completely understand if that’s the case since I’ve been in that position myself. What is disturbing to me is the lack of transparency from the CFSAC office – no announcement through their email listserv, bare minimum explanation when I ask for comment, and no information about what happens next.

  2. I met Dr. Rose and we chat briefly. She came across someone with a genuine desire to be of service and to help the community. I hope her health issues are not the reasons why she had to resign from the CFSAC.

  3. I understand the limitations placed on us by having the conditions for which we advocate. It is possible that Dr Rose in her desire to contribute were an unrealistic assessment, especially due to the nature of ME/CFS.

    I am greatful that you, Jeannie, are the watchdog. The CFSAC must be held accountable, and I pray they are able to find a replacement soon, and that the replacement is someone willing to make a difference.

  4. SiteReader2 says:

    Just a thank you, Jennie, for all your hard work on CFSAC issues.

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