Conference Calls for Serious Research
By Terri Lupton, RN

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 serious research.

Participants included people with chronic fatigue and immune dysfunction syndrome (CFIDS), patient advocates, physicians, researchers, and federal agency representatives.

The conference 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.

Most 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.

Experts 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. 

Research highlights 
The 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 illness changes.
• 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 illnesses.
• 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.

Audio cassettes of the conference can be obtained through AudioTranscripts, Ltd. at atltapes@aol.com 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.