Advocacy Alert: 04/25/2006 

The CFS Advisory Committee to the Department of Health and Human Services (DHHS) met on Monday, April 24, 2006 to brief five new committee members, review the status of the Department’s response to prior recommendations, hear reports from federal agencies and receive testimony from members of the public. Dr. Anthony Komaroff chaired the meeting in the absence of committee chairman Dr. Nahid Mohagheghpour, who was unable to attend due to a long-standing prior commitment. Jane Fitzpatrick was also not in attendance. Dr. Komaroff introduced the committee’s new acting Executive Secretary, Dr. John Eckert, who replaces Dr. Howard Zucker and welcomed five new committee members: Rebecca Artman, Dr. Lucinda Bateman, Kristine Healy, P.A., Dr. James Oleske and Dr. Morris Papernik.

The morning session’s presentations were led by Pat Fero, executive director for the Wisconsin CFS Association, an invited guest of the committee. She presented an analysis of National Institutes of Health (NIH) funding for CFS based oninformation received in response to a Freedom of Information Act request. She called attention to the proportion of grants from 2000-2005 for fibromyalgia reviewed by the CFS panel, the very low number of new CFS studies funded by NIH in 2004-2005 and the impact of the discontinuation of the CFS Cooperative Research Centers program in 2002. NIH representative Dr. Eleanor Hanna complimented Pat on the thorough assessment and her ability to obtain information that she could not access internally. Dr. Hanna reported that the success rate for CFS proposals from 2000 to 2006 was 27%, compared to the overall success rate at NIH of 21%; the numbers of applications submitted and approved, however, were small, with 71 grants submitted and 19 awarded funding. A lengthy discussion of past issues with NIH funding engaged all members of the committee. (Concerns about NIH funding had been brought before the committee in past sessions by Pat Fero and CFIDS Association President and CEO, Kim McCleary.)

Another invited guest, Rik Carlson, president of the Vermont CFS Association, addressed the committee next. He expressed his frustration with the state of patient care for CFS, the lack of community resources and public support for people with CFS, and the “foolish name” given to this disease. He reported that his organization was working with the Vermont legislature and Department of Health to obtain funding to distribute the CFS Consensus Manual (developed by the NJ CFS Association) to patients and health care professionals in Vermont . Following discussion, the committee heard from public witnesses, Fran Hisler, Mary Schweitzer and Kim McCleary .

After the lunch break, Dr. Komaroff invited the agency representatives to update the Committee on progress since the last meeting. Representatives from the Food and Drug Administration and the Social Security Administration were not present at the meeting. The Centers for Disease Control’s Dr. William Reeves reported on new research published in the April 2006 issue of Pharmacogenomics and covered widely in the press. He reviewed the Georgia surveillance study and described education activities, including the national public awareness campaign scheduled to launch on June 7. He asked Lindsey Polonec of CDC’s National Center for Health Marketing to discuss that campaign in greater detail. Members of the committee and the public engaged in a question and answer session and dialogue about the implications of the research announcements, research funding levels (down 66% compared to 2005) and ways in which the committee could be helpful to fostering continued progress by the CDC’s research group.

Reporting for the NIH, Dr. Eleanor Hanna stated that 29 grant requests received in response to the Request for Applications had been reviewed in January and that there were some very innovative and strong study proposals submitted. She quoted the review panel’s chairman, Dr. Peter Rowe of Johns Hopkins University, as saying, “these studies will really move the field of CFS research forward.” The announcement of grants funded will occur as the individual institutes hold May Council meetings, the bodies that make final funding decisions. She also described early plans to host a workshop about CFS across the lifespan, including CFS in children and the elderly, and another looking closely at the doctor-patient relationship in challenging illnesses like CFS. Dr. Hanna also commented that the CFS page on the ORWH web site is the second most popular and that the proceedings of the 2003 neuroimmune mechanisms in CFS workshop is the most-requested publication. Discussion about NIH’s research portfolio, means to stimulate interest in CFS among scientists and the review process followed.

Dr. William Robinson discussed the past involvement of the Health Resources and Services Agency (HRSA) in provider education activities now led by the CDC. He info rmed the committee about HRSA’s mission and the shrinking scope of its programs due to significant budget cuts. He suggested that new agency initiatives to expand telehealth/telemedicine training might present collaborative opportunities to distribute programs on CFS. The committee discussed means of getting CFS included in medical school curricula and the need to look beyond the physician community to other health professionals, especially nurses and physician assistants.

The committee then turned to process issues regarding minutes, previous recommendations, committee membership and its next meeting. Approval of the September 12, 2005 meeting minutes had been deferred from the morning session to allow Dr. Eckert to research the final statement of those minutes, stating that the recommendation to hold a January 2006 meeting would not be forwarded to the Secretary. Dr. Eckert reported that he had been unable to reach the appropriate staff to determine why this was handled as it was, and the minutes were approved with a proviso to obtain an answer on this issue and to correct several minor misstatements. In discussing the next meeting, the committee determined that due to the lack of response from the Department on recommendations made in August 2004, Secretary for Health Leavitt would be asked to participate in the next meeting to personally address the status. A tentative date of July 31 was set, unless Secretary Leavitt could accommodate an earlier meeting date.

Committee membership was also reviewed, in light of the one outstanding appointment and the expiration of five committee members’ terms in September*. New committee members expressed concern about the lack of institutional memory and continuity this would create and Dr. Eckert agreed review the Federal Advisory Committee Act for the possibility of extending terms or having some “vintage” members serve a second consecutive term. He also indicated that the Department was making a final review to fill the one vacant seat on the committee. In response to a question about the renewal of the committee’s charter, Dr. Eckert stated that he would obtain information about its status as well. The Committee agreed not to activate subcommittees at this time, to enable the Committee as a whole to reorient itself to all the issues of concern.

Before concluding the session, the Committee considered whether to extend invitations to other agencies and Departments to participate in the next meeting, as well as whether the Committee should focus specifically on CFS or extend its work to fibromyalgia, Gulf War Syndrome, multiple chemical sensitivities and other related conditions. The decision was made to table invitations to other agencies for one meeting, in an effort to resolve the outstanding issues related to past recommendations. It was also agreed that the committee should focus on CFS, although the overlap with other disorders would inevitably enter some discussions, as this is a persistent issue for patients, researchers and clinicians alike. Dr. Eckert thanked the committee for its guidance on these important issues and the meeting was adjourned at 5:00 p.m.

*Members whose terms expire on September 30, 2006: Jane Fitzpatrick, Kenneth Friedman, PhD, Anthony Komaroff, M.D., Nahid Mohagheghpour, PhD, and Staci Stevens.