The Chronic Fatigue Syndrome Advisory Committee Update 

The CFS Advisory Committee held its third meeting inWashington, D.C. on Monday, March 22, 2004. Chairman David Bell called the meeting to order and quickly dispensed with introductions, procedural matters and approval of the past meeting’s minutes. He launched discussion with a review of the committee’s actions on the dicey topic of the name change. It set a decisive tone for the day which was marked by moving public testimony, balanced participation by committee members and productive exchanges with ex-officio representatives of federal health agencies.

Bell, a well-respected physician from Lyndonville, NY, is known for recognizing a cluster of disabling illness among teens and adults in his rural farming community in 1984-1985. His reputation as an unwavering advocate for CFIDS patients and a careful researcher made him an indisputable choice to chair the committee, formed in 2002 by Secretary for Health Tommy Thompson. But Bell surprised some when he accepted the post. His gracious manner and prior reluctance to engage actively in policy matters seemed oddly suited for challenging funding priorities and setting recommendations for the world’s largest biomedical conglomerate, the multi-agency U.S. Department of Health and Human Services.

Name Change
The name change issue had been at the center of debate during the committee’s last session on Dec. 8, 2003. Chairman Bell led that discussion too, affirming that the term “chronic fatigue syndrome” was wholly unacceptable to every member of the committee, but that the alternative proposed by the Name Change Workgroup (NCW) was vague and would do little to solve problems of stigma and trivialization attributed to the current term. The committee presented a statement on the name change, voted and unanimously approved it. Many observers voiced strong opposition to the position taken by the committee to put off a name change; during the public testimony session they referred to a swell of support within the CFIDS community for immediate adoption of a new name and recounted stories of abuse by doctors, employers and friends that stemmed from the term chronic fatigue syndrome. Committee members, all of whom have personal or professional experience dealing with the illness, conveyed familiarity with the suffering the illness and its name impose. Yet, at the end of the December meeting, and the beginning of the one in March, they remained unconvinced that a new name would diminish such problems without creating new, possibly more formidable, challenges.

NIH Reports
Moving on to other business, the Committee heard from Dr. Terry Hoffeld of the National Institutes of Health (NIH) Center for Scientific Review. Hoffeld oversees the review of most grant applications for CFS research submitted to NIH. He assembles review panels and guides applicants through the extended process he described in detail for the Committee’s benefit. In response to questions from committee members, he stated that CFS grants often fail to win funding support due to a lack of innovation or a sub-standard presentation of study aims and protocols. Overall, NIH funds about 30 percent of grants submitted; when asked about the track record for CFS grants, Hoffeld estimated it was closer to 25 percent. Questions about the specific CFS projects funded by NIH were directed to Dr. Eleanor Hanna of NIH’s Office of Research on Women’s Health. Dr. Hanna coordinates research efforts across the 29 NIH institutes. She reported that a list of grant titles and investigators was awaiting final agency clearance for distribution to committee members. During a discussion of intramural research performed by scientists at NIH, Dr. Hanna commented that there are some studies under way, although there is no campus lab dedicated solely to CFS research. She announced that she was initiating a new group for intramural researchers to dialogue about multi-symptom illnesses using an integrative approach. So far she had strong interest among several top NIH scientists. The group would have its first meeting in April, from which she hoped to form a steering committee. The CFSAC considered several possibilities for boosting NIH supported research, including recommendations to establish a CFIDS -specific intramural program, create a post for a CFS research coordinator or call for CFS centers of excellence or clinical trials. Dr. Bell suggested the committee explore these possibilities further and set recommendations at the next meeting. A research subcommittee was established to conduct additional inquiries.

Other Agency Activities
Representatives of other agencies provided important information to the committee as well. Dr. William Reeves of the Centers for Disease Control (CDC) reported that his CFS research group is making steady progress in its molecular epidemiology studies using high tech methods to identify biomarkers. His staff will be testing samples obtained from their massive Wichita clinical study and are awaiting approval for a population study in three distinct regions of Georgia . Questions posed to Dr. Reeves centered on CDC’s publication of research guidelines for CFS studies and means by which recommended tools could be used to improve patient care. He also addressed questions about staffing levels and collaborations, responding that he was still in need of three additional scientists and that CDC was engaged in several productive ventures with academic researchers, including a large group at Emory University . The committee’s sole recommendation of the meeting was for the Secretary to provide CDC with three additional “full-time equivalent” positions for CFS research.

Social Security Administration (SSA) representative Bill Anderson announced that SSA would conduct an interactive video training on CFS for disability evaluators on April 1. He also stated that his group is tracking allowances and denials for CFS-related disability cases in an effort to identify geographic and other disparities in such decisions. Committee member Lyle Lieberman, a disability attorney, emphasized the need for continuous training due to the high rate of turnover and the time pressures on those who handle disability applications at the first and second level of review. Dr. Bell formed a subcommittee to look at disability issues and appointed Mr. Lieberman its chair.

Education
A two-hour segment dedicated to education issues was shortened considerably when education subcommittee chairman Dr. Roberto Patarca was unable to attend in person due to travel complications. Dr. Patarca led a brief discussion by phone, addressing various issues the subcommittee will take up before the June meeting. In addition to the education of health care providers, Patarca stated that they would look at allied health professionals and problems children with CFS experience with schools. Dr. Bell reminded the subcommittee of the high priority of these topics and the need to swiftly develop recommendations to discuss at the June meeting.

Other Voices
Three patient organization representatives addressed the committee and eight other advocates spoke during two half-hour sessions dedicated to hearing concerns from the public. Pat Fero, president of the Wisconsin CFS Association, shared her analysis of NIH-funded research for 2001-2003, information about a house their organization is building in Sun Prairie, Wisc., to create a clinical program and education center, and the group’s hosting of the bi-annual research and patient conference sponsored by the American Association for Chronic Fatigue Syndrome Oct. 8-10 in Madison. National CFIDS Foundation executive director Jill McLaughlin conveyed her organization’s support for a name change and announced that an NCF-funded researcher, Dr. Yoshitsugi Hokama, was recently awarded NIH support to study the role of ciguatera toxin in CFS.

Kim (Kenney) McCleary, The CFIDS Association of America’s president and CEO, provided an update on the Association’s education, public policy and research activities. She highlighted provider education initiatives, the planned launch of a new interactive feature on the Association’s web site to spur grassroots involvement in advocacy, and the review of 24 letters of intent submitted to its research program. Referring to a statement made by Dr. Bell at the Dec. 8 meeting, “…the disrespect patients experience is not just caused by the name,” Ms. Kenney reiterated the Association’s commitment to move forward with credibility-enhancing efforts until consensus for a name change can be broadened beyond the patient community. Association chairman Jon Sterling, a consultant to the CFSAC, played an active role in discussion throughout the day, offering historical perspective and frequently reminding the committee of the need to phrase its ideas as recommendations to the Secretary.

Eight members of the public presented the most thoughtful and moving collection of testimony ever offered before the committee or its predecessor, the CFS Coordinating Committee. They spoke in compelling terms about the difficulties they had encountered in living with the illness or caring for a loved one with CFIDS . Some became emotional when sharing such personal details, while others described feeling empowered by the experience of addressing the committee. A few scheduled presenters weren’t able to make it to the meeting, a testament to the unpredictable limitations CFIDS imposes. Members of the committee recognized the hopelessness and despair that many with CFIDS experience and affirmed their intent to finalize a series of recommendations to Secretary for Health Tommy Thompson to address the many challenges identified at this meeting and the previous two. With a reminder that the next meeting would take place in mid-June, Dr. Bell adjourned the meeting.

For more information about the CFSAC, including a roster and minutes of past meetings, visit http://www.hhs.gov/advcomcfs/index.html. Committee updates are also provided in each issue of The CFIDS Chronicle and on the Association’s web site, www.cfids.org.

• Dr. Beverly Bugos, Virginia
• Carey Czarniawski,New Jersey
• Eileen Holderman, New York
• Chris Kraus, Wisconsin
• Marly McKibben, Florida
• Carol Rowland, Washington, D.C.
• Mary Schweitzer, Delaware
• Peter White, Virginia
• Sharyn Williams, New Jersey (mother of Carey Czarniawski)