Research project to clarify CFS knowledge
A review of the nearly 2,000 references to chronic fatigue syndrome (CFS) research in the Medline database often yields conflicting information. In an effort to clarify scientific knowledge about CFS, three federal agencies—the Agency for Healthcare Quality and Research (AHRQ), the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC)—are funding an “evidence based” review of the CFS medical literature.

A panel of 15 technical experts (including CFIDS Association staff member Vicki Walker) from the United States, Canada, the United Kingdom and Australia are working with the San Antonio Evidence-Based Practice Center, which will produce the evidence report, to determine the scope of the project. The report, which may take a year or more to become public, will address the following questions:

1. What are the existing case definitions for CFS and which case definitions, if any, have been substantiated/validated with reliably discriminating constellations of symptoms?
2. What is the range of manifestations and natural history of CFS?
3. Do controlled studies show that any particular therapy improves clinical symptoms of CFS when compared to placebo, no therapy or each other?

Although it is not likely that the evidence report will provide any new information about CFIDS, it should clarify existing knowledge, point out gaps in the research and provide needed direction for future scientific efforts. We will announce the report’s availability upon its release, likely in 2001.

GAO report addressed
The Department of Health and Human Services’ (DHHS) CFS Coordinating Committee (CFSCC) met on July 12 to discuss the General Accounting Office (GAO) report on federal CFS programs (see the Association’s web site and the summer 2000 Chronicle, page 12). In addition to GAO staff, directors of the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH), Jeffrey Koplan and Ruth Kirschstein, attended the meeting and answered questions from CFSCC members. Drs. Koplan and Kirschstein explicitly stated that their agencies take CFS very seriously as a debilitating medical condition.

CFSCC members objected to the GAO’s counting of $13 million in non-CFS research grants toward NIH’s CFS research funding. Removing these unrelated research grants from the tally results in a 30% drop in CFS spending over the past four years and undermines the GAO’s statement that CFS funds have not significantly decreased in recent years, stated Dr. Nancy Klimas.

GAO staffers said that they relied on the agencies to provide accurate reports, but in all likelihood CFS funds had decreased or, at best, had remained flat.  They declined the CFSCC’s request that the report be amended to reflect this.

Committee members were also unhappy that the GAO did not make recommendations for improving the quality and quantity of federal CFS research efforts. The GAO said they felt it was not possible because its “difficult” peer-review system requires all elements of the report to be supported by facts. Because CFS is a relatively new field, the GAO felt that any suggestions would not pass this test.

Another point of contention was the GAO’s statement that the CFSCC had made only three formal recommendations to DHHS Secretary Shalala, none of which had elicited a response. CFSCC members recalled making additional recommendations, but were told that they may not have been in the proper format (never articulated to the committee), so the GAO did not recognize them.

At the conclusion of the meeting, the CFSCC made a series of recommendations to Secretary Shalala, which, they were assured, were in the proper format. The recommendations, transmitted to the Secretary in September, were: to expand intellectual resources and research funding; to stimulate promising research areas by issuing grant announcements; to appoint a full-time director of CFS research at NIH; and to ask DHHS to inform the CFSCC how their recommendations have influenced DHHS policy before its next meeting.

There was extensive discussion about the CFSCC’s structure because, according to the GAO, it is the only DHHS advisory committee that has a federal chair and voting privileges for federal employees. The CFSCC agreed to take up these structural issues over its next few meetings in an effort to improve its function.

It was announced that two new departments and two new members would join the CFSCC in October. The Departments of Defense and Veterans Affairs will be represented by liaison members, and Leonard Jason, PhD, and attorney Jeffrey Rabin will replace outgoing members Dr. Nancy Klimas and attorney Aba Heiman.

In February 2000 Kim Kenney’s and Dr. Anthony Komaroff’s current terms on the CFSCC will expire. Before the September 11 deadline, The CFIDS Association nominated Kenney, President & CEO of The CFIDS Association, for the patient advocate position and Dr. Komaroff and Roberto Patarca, MD, PhD, for the biomedical researcher slot. There is no regulation prohibiting members from serving consecutive terms, however it is rather unusual.

The CFSCC’s October 25 meeting in Wash., D.C., will be reported on in the winter 2001 Chronicle. The committee will next meet on January 30 in Seattle, Wash. following the American Association for Chronic Fatigue Syndrome’s (AACFS) research and clinical conference.

Name change progress
The DHHS workgroup on the proposed CFS name change announced that it is developing a process for advancing alternative names and bolstering alternatives with appropriate evidence from the scientific literature and clinical experience. The workgroup plans to hold a public session at the AACFS conference on January 28 in Seattle, Wash.

Congressional activity
At the time this issue went to press, Congress had not yet passed its fiscal year 2001 health spending bill but was still working in an extended session to make funding decisions. Upon passage, the CFIDS-related segments of the Health and Human Services bill will be posted to the Association’s web site.

Call for CFS Grants
The Department of Education’s National Institute of Disability and Rehabilitation Research issued an announcement in August calling in part for proposals that identify and evaluate health management, medical rehabilitation or community integration needs of persons with newly recognized disabilities such as CFIDS, multiple chemical sensitivity or other autoimmune related diseases. See the Association’s web site for additional information.

Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association of America.