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CFS Advisory Committee Meeting Highlights

Kim McCleary urged the committee to develop a comprehensive research agenda

October 12-14, 2010

The Department of Health and Human Services (DHHS) CFS Advisory Committee (CFSAC) met Oct. 12-14, 2010 in Washington, D.C. Here are some highlights of the meeting, with links to the materials housed on the CFSAC web site and archived webcast video, which includes a helpful index of meeting segments so you can watch individual presentations in any order. The video links also display the slides (if any) used by the speaker.

  • Day one was dedicated to a review of key scientific findings. There were opportunities throughout the day for attendees to ask questions and dialogue with the speakers.

    • Assistant Secretary of Health, Dr. Howard Koh

  • Assistant Secretary for Health Dr. Howard Koh made some general remarks at the beginning of the meeting’s second day.
  • Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health and the CFSAC’s designated federal official provided several committee updates.
    • The committee’s formal charter, renewed Sept. 5, 2010 for two years, was revised to include agency representation from the Centers for Medicaid and Medicare and the Agency for Healthcare Research and Quality.
    • There had been some action on about half of the recommendations made by the committee since 2004, tracked in a document posted to the CFSAC website.
    • Several nominations had been received for the five openings on the committee that will occur in April 2011 as a result of staggered terms; however, to maintain continuity, the Department was working to extend terms of the committee chairman (Christopher Snell, PhD) and subcommittee chairs (Leonard Jason, PhD and Nancy Klimas, MD). (The CFIDS Association nominated seven individuals.) New committee members are selected by the Secretary under rules set forth in the Federal Advisory Committee Act.
    • The CFSAC site on the Department’s website had significant traffic increase since Oct. 2009. It consistently ranks in the top 50 most-accessed areas.
  • Experts representing disciplines related to disability documentation provided presentations on cognitive function and assessment of functional capacity, vocational capacity and metabolism.

    • Robert Miller (center) and others challenged the agencies to “Act Now”

  • Three hours of public testimony were interspersed throughout days two and three. Several people in attendance carried “Act Now!” signs and wore t-shirts imprinted with “NIH – What have you done for M.E. lately?” following up on a write-in campaign to NIH director Francis Collins. Written statements submitted by individuals who gave oral testimony and for the record are available here.
  • On day three, agency representatives provided and committee members challenged progress reports.
    • With the retirement of National Institutes of Health (NIH) staff member Eleanor Hanna, PhD, CFS activities at NIH will be coordinated by Dennis Mangan, PhD, senior advisor in the Office of Research on Women’s Health. Dr. Mangan pledged to change the name of the Trans-NIH CFS Working Group to the Trans-NIH ME/CFS Working Group and expressed his interest in being a conduit to NIH leadership.

      • A panel of NIH program officers gave updates on studies

    • A panel of program officers from the National Institutes of Health reported on current agency activities, including the Blood Safety Study (see Simone Glynn, MD, of the National Heart, Lung and Blood Institute) and a multi-lab XMRV study being led by Ian Lipkin, MD, of Columbia University (see Cathy Laughlin, PhD, National Institute of Allergy and Infectious Diseases).
    • NIH is planning a State of the Knowledge conference for spring 2011.
    • The Centers for Disease Control & Prevention (CDC) is completing the selection process for a permanent chief of the Chronic Viral Diseases Branch. The position has been filled on an acting basis by Elizabeth Unger, MD, since February when William C. Reeves, MD, was assigned to another position.
    • CDC will make some of its data sets available to researchers through the newly established research data centers.
    • The Social Security Administration will be updating policy ruling 99-2p that recognizes CFS as a potentially disabling condition.
    • The representative from the Food and Drug Administration, Marc Cavaille-Coll, PhD, was challenged to serve as more effective conduit of information between the agency and the committee on issues of drug development and regulatory approval.

    CFSAC members discuss recommendations

  • At the end of the third day, the committee discussed and unanimously adopted three recommendations to send to the Secretary of Health.

    • Motion 1: Following other successful networking models for complex diseases, we propose the development of a national research and clinical network using regional hubs serving as a patient care/education/research hub to fill a crucial need for the ME/CFS community. This network would link multidisciplinary resources expanding access to expert patient care, assisting patients in disability assessment, develop educational initiatives and certification programs, providing the core support for a much needed research and clinical trials networks, and providing experts to develop health care policy. We believe that such a proposal which integrates clinical medicine with basic, translational and clinical trials research would address urgent needs with respect to ME/CFS including physician education to train skilled practitioners and expanding access to medical care for patients in different regions of the country for the hundreds of thousands of patients that are needing care, and translational and clinical trials research to rapidly move new knowledge to proven successful clinical treatments. Research has been hampered by a lack of large databases that would allow subtype analyses and focus treatment approaches. This can only be accomplished by establishing a national network. This network will standardize recruitment efforts as large databases are collected. Clinical education and care will hub regionally from these settings, which will fill an unmet need for patient care throughout the US and monitor the effectiveness of standard and research treatments for patients with ME/CFS. This innovation will reduce costs currently incurred by emergency care treatment and specialty care, and the disability and loss of work force contributions that often occur with those afflicted by delays of treatment of this debilitating illness. We fully expect the Chair of the CFSAC will engage in regular discussion with the Assistant Secretary, at present Dr. Koh, in order to develop ways to implement this recommendation. Both sub-committees will be fully informed of these negotiations and the spring meeting of the CFSAC will be the place where the plans are vetted by the entire committee.
    • Motion 2: HHS leadership should engage the expertise of the CFSAC as it moves forward in developing policy and agency responses to the health crisis that is ME/CFS. Using experts as consultants early in the process in this exciting time of dramatic health care reform and policy change will bring rapid progress and promote a more effective HHS response on behalf of this underserved and very ill population. Pressing needs such as coordination of the federal research agenda and addressing agency response to issues of access to care, provider and community education, fair access to disability benefits, and rapid testing and approval of effective treatments need to be a priority as the agency redefines its goals.
    • Motion 3: That HHS use the term ME/CFS.

Recommendations made by the Committee are passed to the Assistant Secretary for Health, to the Secretary of Health. Secretary Sebelius sent a written letter to the Committee, acknowledging its spring recommendations. The next meeting of the CFSAC will be held in spring 2011, possibly to coincide with the NIH’s State of the Knowledge meeting.

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