CFS Advisory Committee (CFSAC) Recommends Change

On May 27-28, 2009, the CFS Advisory Committee (CFSAC) to the Department of Health and Human Services (DHHS) met in Washington, D.C. This was the Committee’s fifth meeting with its current membership and its 16th overall since being chartered under the Federal Advisory Committee Act in 2002. Committee chairman Dr. James Oleske welcomed the appointed committee members, all of whom were present, and members of the public who had come to listen and give testimony. The CFIDS Association was represented at the meeting by Kim McCleary, president & CEO.

Executive Secretary Dr. Wanda Jones, representing the Department’s Office of Public Health and Science, was introduced and explained that her office, the Office of Women’s Health at DDHS, had taken responsibility for committee management as had been announced at the October 2008 meeting. Dr. Jones also explained that, for the first time with assistance from NIH, the meeting would be videocast in real time to participants watching over the Internet, and that the proceedings would be archived for later viewing.

The two-day meeting agenda followed the same general format as the prior 15 meetings, with agency reports from five federal health agencies (Health Resources and Services Administration, Social Security Administration, National Institutes of Health, Food and Drug Administration and Centers for Disease Control & Prevention (CDC)), three sessions of public testimony, subcommittee reports and committee discussion and recommendations. Several hours on the second day accommodated special presentations on pediatric CFS and the experiences of youth and families dealing with special challenges related to pediatric CFS. Slide shows given by two federal representatives from the Administration for Children and Families and the Department of Education Office for Civil Rights drew interest from committee members, but they did not discuss the issues presented or make any related recommendations.

The “highlight” of the meeting was the CDC’s presentation of its draft five-year strategic plan for research and subsequent questioning by the committee of presenters Dr. William Reeves and his boss, Dr. Stephen Monroe. While the written plan is lengthy and detailed on its surface, most in attendance concluded quickly that it was substantially similar to past reports from Reeves on his research group’s activities. Between the two segments of the meeting devoted to this topic, Association president & CEO Kim McCleary delivered her public testimony, departing from prepared remarks to give a frank assessment of the CDC’s plan and to urge the committee to use its time to delve deeper into the agency’s real priorities and emphasis for the coming five years. “Many came here hoping to hear a future-focused presentation from CDC and instead we got a history lesson. It’s up to the CFSAC to sort out what’s new and how CDC will use its taxpayer funds to advance progress.” She urged the committee members to separate CDC’s mission from NIH’s; to closely examine CDC’s lack of productivity in recent years; to question the “vision” and innovation represented by the plan; to scrutinize the impact of CDC’s sole commitment to using its “empiric” guidelines to define CFS; to identify how CDC was defining subsets in its studies; to question how the bulk of activities focused in Bibb County, Georgia, would be applicable to a larger population; and to ensure that acute and reactivated viruses were included in the research agenda. McCleary implored the committee to ask CDC questions about its staffing, expertise and budget for the plan it had laid out, none of which were addressed in the written document or the slide show.

Other testimony heard over the two days was similar to that delivered at the April 27 public meeting at CDC. Over and over again, members of the public reiterated a lack of confidence in CDC’s program and leadership. Advocate Bob Miller was the first to call for Reeves’s dismissal and others followed his lead, including IACFS/ME president Fred Friedberg speaking on behalf of the organization’s members. Advocates Cort Johnson and Craig Maupin both delivered withering criticism of the draft plan. CFIDS Association chairman Jennie Spotila called on the committee to deliver a detailed briefing to new Secretary of Health Kathleen Sebelius.

At the very end of the second day, committee members rushed to make a series of recommendations arising from subcommittee discussions. The process, was not as smooth as one would hope, but it did yield three recommendations to be further refined through e-mail before being transmitted to Secretary Sebelius by executive secretary Wanda Jones. The text of the recommendations as presented and passed that afternoon are copied below, as are links to other reports about the meeting and individual testimony delivered.

CDC has posted its draft plan and has solicited input from the community before June 30, 2009. (For those who might wish to view this part of the meeting on the video at http://videocast.nih.gov/Summary.asp?File=15130, Reeves presented the plan on Day 1 at about 10:15 a.m. and the question and answer session followed the short lunch break at about 1:00 p.m.) Comments can be sent directly to CDC at CFSResearchPlan@cdc.gov.

Recommendations from the CFS Advisory Committee to the Secretary of Health and Human Services May 28, 2009

Recommendation #1: Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.

We have heard from the IACFS/ME president who represents the scientific CFS community, call for new leadership within the CDC’s CFS program. We also learned that a CFS patient group has over 1000 signatures asking for a change in leadership at the CDC’s CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership of the CDC’s CFS program. We are concerned with input from these diverse groups. We also felt that the 5-year plan offered at our CFSAC meeting was ambiguous concerning what could be accomplished with available resources, and also seemed to lack a bold vision to significantly advance the field.

Approved by unanimous vote.

Recommendation #2: Provide adequate funding to effectively carry out a detailed 5-year plan. This should include immediate progress in these areas:

1. Identification of biomarkers and etiology of CFS
2. Partnership with organizations representing CFS scientific expertise to create guidelines for adult and pediatric management
3. Provide web based guidelines for CFS management given our current state of knowledge and expert opinion
4. Provide comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources

Approved by unanimous vote.

Recommendation #3: HHS establish 5 regional clinical care, research, and education centers, centers which will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational and clinical research on CFS.

Approved by unanimous vote.

Other Meeting Reports and Links to Testimony

Written testimony submitted by the CFIDS Association of America: http://www.cfids.org/cfidslink/2009/060309a.pdf

Khaly Castle’s meeting report: http://www.cfsunited.com/blogseditor.html

Dr. Fred Friedberg’s testimony on behalf of the IACFS/ME: http://www.iacfsme.org/

Cort Johnson’s blog posts about the meeting: http://aboutmecfs.org/blog/

Cort Johnson’s interview with Kim McCleary About the Meeting: http://aboutmecfs.org/blog/?p=553

Craig Maupin’s testimony: http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0905e&L=co-cure&T=0&F=&S=&P=432

Jennie Spotila’s testimony: http://www.cfids.org/cfidslink/2009/060309b.pdf

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