The Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) met January 10, 2005, in Washington, D.C., to hear presentations and testimony on issues affecting children and adolescents with CFIDS, as well as to receive agency reports and updates on past recommendations. This was the committee’s first session of the fiscal year and its sixth meeting overall.
For the first time since the CFSAC began meeting in September 2003, all 11 appointed members of the committee were present. After briefly handling administrative matters, Chairman Dr. David Bell reminded the gathering of approximately 50 people that the committee would commence, with this meeting, a new format focusing on a single topic of interest. In contrast to past meetings, invited guests would be selected based on the focus for each meeting, and public witnesses would be encouraged to address this theme as well.
Dr. Peter Rowe, a pediatric researcher who directs a CFS clinic at Johns Hopkins Hospital’s Children’s Center, was the first invited guest to address the committee. Dr. Rowe, whose research group first reported problems of orthostatic intolerance and blood pressure control in adolescents with CFIDS in 1995, presented an eloquent review of the complexities of diagnosing and treating young CFIDS patients using the case study of a patient he has cared for since 1996. This young female had become acutely ill in 1991 at age 12, and despite having a concerned and sympathetic pediatrician, was sleeping up to 20 hours a day and receiving homebound teaching through most of 6th and 7th grade. She was 16 by the time she reached his clinic, and Dr. Rowe described the challenging overlay of orthostatic problems, milk protein intolerance and pelvic congestion syndrome that were uncovered over the eight years since she became his patient. Dealing with these conditions contributed to gradual improvement, and he reported that she presently rates her health at about 85-90% wellness.
He used her case to illustrate the time required to deal effectively with these complex problems, the need to utilize a multidisciplinary approach to care and research, and the methodological challenges of designing studies on CFS. He lamented the burden placed on clinicians experienced in the care of CFS patients and expressed the difficulty of sustaining clinics like his in the resource-strained environment of academic medicine. Dr. Rowe concluded by presenting his “dream vision” of a time in the future when there are multiple accredited clinical/research care centers for CFS around the country, readily available training grants for young CFS clinicians and researchers and multiple funding sources for substantial basic research and clinical trials. Dr. Rowe’s presentation was followed by numerous questions from committee members and vigorous discussion of the very salient issues he brought to light.
Next, the committee heard from 16-year-old Chelsea Morgan, joined by her mother, Catherine. Chelsea recounted the harrowing tale of her almost three-year battle with CFIDS. Her illness began in the 8th grade with a bad sinus infection that persisted in spite of aggressive treatment by specialists, who prescribed multiple antibiotics, steroids, allergy shots and surgery. Her health continued to worsen, which led one doctor to conclude she was simply “school phobic,” another to suggest she was just “manipulating her family” and school officials to try to place her in the alternate school for students with discipline problems. Fortunately, her mother’s determination finally led them to a compassionate doctor who believed her condition to be medical in nature, helped get the appropriate school services and ultimately helped her achieve some improvement in symptoms and function. Chelsea admitted that at many times she never wanted to see another new doctor and in responding to a question from the committee, her mother reported that many times she had been accused by physicians of being “overbearing.”
Other questions and discussion drew attention to the variability between schools and school districts in meeting students’ needs for special education services, the abuse often experienced by young patients and their parents at the hands of medical and education professionals and the expense and time-consuming nature of advocating for appropriate medical and education services. These themes were repeated by several of the public witnesses (see list below) who later testified before the committee, underscoring the urgency of these problems and the need for coordinated efforts to address and resolve them.
Betty McConnell, chair of the New Jersey CFS Association Youth Education Committee, presented a comprehensive report on her organization’s multiyear activities to inform school nurses, administrators, teachers, counselors and support staff about CFS and the medical and education needs of young people with CFS. Through exhibiting at state conferences of these professionals, sponsoring an annual student scholarship, conducting regular mailings and offering a lending library of books and videos on CFS, they were helping to spread the word to patients, family members and educators.
She announced two new initiatives under consideration by NJCFSA, the potential establishment of a scholarship for a medical student at the University of Medicine and Dentistry of New Jersey (UMDNJ) and the possibility of conducting a prevalence study of CFS in children and adolescents in NJ in conjunction with researchers at UMDNJ. Betty commended the NJCFSA board for supporting past activities and new plans and called for an increase in the funding available to state and local organizations carrying out these types of grassroots education and advocacy services. She reported that their efficacy could be measured in the noticeable decrease in the number of calls received from parents seeking help and the increase in information requests from organizations of health care and education professionals.
The committee also invited a representative of the American Academy of Pediatrics to present testimony and recommendations, but no one from that organization attended.
The afternoon session allowed for updates from federal agency representatives, with the greatest amount of time dedicated to a presentation from the Centers for Disease Control and Prevention’s (CDC’s) Dr. William Reeves on his research group’s latest studies. Dr. Reeves devoted the bulk of his time to recent efforts to improve classification of CFS cases utilizing well-tested study instruments to measure symptom frequency and intensity and the disability associated with CFS. He reported that in developing these methods, his group had arrived at a reproducible means of grouping cases, although he cautioned that these methods were being documented in a manuscript and therefore awaited review by peers and confirmation by other groups. He did announce that when CFS patients’ scores on these instruments were compared to groups of patients with other conditions such as pulmonary disease, multiple sclerosis and osteoarthritis, CFS patients were far more impaired. These comments and reports on other aspects of the CDC’s CFS program motivated praise from several members of the committee for the scope of the research and the standard being set by this group.
Dr. Eleanor Hanna, representing the National Institutes of Health (NIH), followed up, noting that Dr. Reeves had been a guest of NIH on November 18 and that his presentation prompted considerable discussion by the cross-institute working group on CFS that she leads. She reported that her group was interested in the CFSAC’s recommendation that NIH establish Centers for Excellence for CFS, but that the shortage of new funds within the agency would be a significant barrier to implementation. She expressed continued commitment to approach CFS as a multisystemic condition and to build interest among intramural researchers and those in academic centers as well. To that end, she drew attention to the reissue of the NIH Program Announcement on CFS and stated that a new call for proposals was in its final draft and would be issued with approximately $4 million in special funds for successful proposals. She also reported that the proceedings of a June 2003 NIH symposium on neuroendocrine and immune factors in CFS would be available soon.
The Health Resources and Services Administration representative, Dr. William Robinson, expressed his sustained interest in the discussions and deliberations of the committee and thanked them for the recommendations that helped him identify potential partners within his resource-strapped agency. Marc Cavaille-Coll, representing the Food and Drug Administration, noted his interest in the case classification system described by Dr. Reeves, based on the potential advance this might offer in designing clinical trials of treatments for CFS. No representative was on hand from the Social Security Administration in light of Dr. William Anderson’s recent retirement and Dr. Laurence Desi’s illness on that day.
The remainder of the day was spent discussing the means of assessing the impact of the committee’s efforts to date, including how best to make and present future recommendations to the Secretary for Health and agency officials. The next meeting of the committee was set for April 4, 2005, and disability was determined to be the focus of that session. Action items were assigned to specific committee members, including plans for each of the subcommittees on research, education and disability to hold meetings to contemplate recommendations relevant to the very compelling issues of youth and adolescents with CFIDS that were so apparent after the day’s discussions. The meeting was adjourned at 4:55 p.m. and all present were thanked by the chairman, Dr. Bell, and the executive secretary, Dr. Larry Fields, for their attendance and participation.
Dr. Lucinda Bateman
Carol, James and Erin Floyd
Hosiah Huggins, Jr.
Karla J. Rogers
Beverly Bugos, PhD
Source: The CFIDS Association of America, www.cfids.org.