The National Institutes of Health’s
(NIH’s) Chronic Fatigue Syndrome
(CFS) State of the Science Conference, Oct. 23-24 in Arlington, Va., attracted more than 200 people. And
most attendees felt that compared to the last NIH CFS Consultation in February 2000, this meeting was
far more balanced, informative, and productive and that CFIDS was treated as a serious condition meriting
Participants included people with chronic fatigue and immune dysfunction syndrome
(CFIDS), patient advocates, physicians, researchers, and federal agency representatives.
was divided into six topic areas—neuroendocrinology, neurocognition, pain, immunology, fatigue, and orthostatic
intolerance. For each topic, a CFIDS expert presented data followed by two experts in related areas. Not
only did this format shed light on the complexities of the pathophysiology of CFIDS, but it broadened
the discussion into other areas, which may open new avenues of CFIDS research and understanding.
people with CFIDS (PWCs) recognized that this interdisciplinary approach will ultimately raise CFIDS awareness,
generate interest in research, and provide a catalyst for learning more about the illness.
in a multitude of fields were intrigued by how their particular fields of interest may relate to CFIDS
and helped to identify exciting new research areas. Panelists included well-known CFIDS physicians such
as David Bell, Dedra Buchwald, Nancy Klimas, and Peter Rowe.
conference concluded with
an expert panel summarizing CFIDS research needs:
- PWCs are heterogeneous and researchers must subgroup patients by
unique features, such as type of onset, length of illness, immunology, and neuroendocrinology.
- Researchers should describe how the CFIDS case definition was applied
to their study populations.
- CFIDS studies call for repeated measures across time because the
- More information is needed to classify CFIDS as a disease instead
of a syndrome.
- Research must broaden the focus beyond fatigue to other features
of CFIDS and increase interaction among disciplines.
- Because CFIDS disproportionately affects women, the impact of menstrual
cycle, hormones, and pregnancy on the course of the illness should be studied.
- Natural studies over time are needed to detect rare events and subsequent
- Studies on blood pressure, corticotropin releasing hormone, and
hypothalamus-pituitary-adrenal axis abnormalities all appear to point to a central problem as the underlying
cause, but further study is required.
- Comparing CFIDS with overlapping syndromes and with other illnesses
with common features may uncover new insights.
cassettes of the conference can be obtained through AudioTranscripts, Ltd. at firstname.lastname@example.org or by calling
800-338-2111. The summary contains a list of panelists and their papers.
Dr. Donna Dean, Senior
Advisor to the Principal Deputy Director, NIH, says she is serious about “restoring integrity and high
quality work to an area that has been poorly served for too long.” Hopefully, efforts such as this
conference will translate into expansion of CFIDS research through more funding for and interest in CFIDS.
Terri Lupton, BSS, RN, is the Coordinator
for Educa-tional Opportunities
for The CFIDS Association of America.