The D.C. Dispatch
CFIDS Public Policy Report
By Vicki Walker
Research project to clarify CFS knowledge
A review of the nearly 2,000 references
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:
What are the existing case definitions for CFS and which case definitions, if any,
have been substantiated/validated
with reliably discriminating constellations of symptoms?
What is the range of manifestations and natural history of CFS?
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
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
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.
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
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.
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
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