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The Trans-NIH Working Group on Chronic Fatigue Syndrome


Chronic Fatigue Syndrome (CFS) is a debilitating and complex syndrome that may involve multiple bodily symptoms and is characterized by profound fatigue, which is not alleviated by bed rest and can be exacerbated by physical or mental activity. People with CFS often function at substantially lower levels of activity from their pre-onset capacities. Neither a specific cause, diagnostic test, nor treatment has been identified for this illness. It is possible that multiple subcategories of conditions are subsumed under this rubric.

Approximately one percent of the U.S. population is affected. While it appears that Caucasian women suffer with CFS more frequently than do men or women from other ethnic groups, epidemiologic studies indicate that this gap may be narrowing. Also important is that 80% of people identifies in such studies have not been diagnosed or treated. There is also a substantial pediatric population with this condition.

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Role of NIH

The NIH has sponsored CFS research for many years and is committed both increasing the amount and quality of research in this area. However, it is only through the receipt and funding of meritorious research proposals that funding will increase. We have been working in this direction for several years. Through September 1999, the National Institute of Allergy and Infectious Diseases (NIAID) held sole responsibility for research in this area.

In October 1999, Dr. Harold Varmus, in consultation with Dr. Anthony Fauci, recognized that a multidisciplinary and integrated approach encompassing the missions of many NIH ICs was necessary to address CFS, and incorporated responsibility into the Office of the Director (OD). Dr. Donna Dean was appointed to coordinate these efforts as well as the NIH response to a General Accounting Office (GAO) Report, Chronic Fatigue Syndrome: CDC and NIH Activities are Diverse but Agency Coordination is Limited, (GAO/HEHS-00-98) through an NIH Working Group on CFS. She also served as the co-chair of the DHHS CFS Coordinating Committee (CFSCC). Under her direction, the ORWH sponsored a State of the Science Symposium for this committee in October 2000 (State of the Science Conference, October 23-24, 2000).

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  • Through this newly reconstituted Trans-NIH Working Group for Research on Chronic Fatigue Syndrome (CFSWG), the ORWH spearheaded a program announcement (PA-02-34) based on recommendations made in the October 2000 State of the Science Symposium. This PA encouraged innovative and interdisciplinary research that might explain how the various body systems interact to produce symptoms associated with CFS.
  • October 2002 marked the first council round of review in which applications acknowledging PA-02-34 were received. It should be noted that the number of CFS grants reviewed increased from 5 in January 2002 to (TH insert number) for the May 2005 review. The funding rate for these grants is about (TH to insert %).
  • PA-02-34 was revised and re-issued as PA-05-030 on December 28, 2004.
  • The ORWH sponsored for the CFSWG a scientific workshop for research on CFS in June 2003, Neuro-Immune Mechanisms and Chronic Fatigue Syndrome: Will understanding central-mechanisms enhance the search for the causes, consequences and treatment of CFS? The purpose of the workshop was two-fold:
    1. Increase interest the intramural scientific community in CFS research
    2. Form the basis for future ORWH-CFSWG activities. In Proceedings Publication (PDF)
  • Issued an interdisciplinary RFA based on the recommendations from this workshop that illuminated the understanding of how the brain, as the mediator of the various body systems involved, fits into the schema for understanding CFS. This will be difficult and expensive to research but should enhance understanding, and thereby treatment, of CFS and other complex disorders.
  • As a result of intramural interest generated at this workshop, the ORWH and a NINDS intramural scientist were instrumental in forming a new, multi-institute, intramural scientific interest group (SIG). As a founding sponsor, ORWH hosted the charter meeting of the SIG on Scientific Integrated Medicine (SIM)on April 13, 2004. The group has had two subsequent meetings and has appointed an Advisory Board to plan for future meetings and activities. Dr. David Goldstein has written a textbook and will teach a course on SIM at the NIH FAES beginning this fall.

Conclusions and Future Plans

The most important contribution that the NIH can make toward advancing knowledge regarding CFS at this time is to stimulate and support high quality research throughout its programs on the causes, consequences and treatment of CFS and related diseases. To this end, the CFSWG is planning three new scientific workshops to address:

  • Study of CFS across the lifespan
  • Treatment Approaches to CFS,
  • Issue in Doctor-Patient Relationships in the clinical interview to explicate the stigma that is felt by many multisystemic disease sufferers to impact their medical care.

It is expected that, by continuing and expanding on efforts to solicit and fund new scientific initiatives as well as to attract new researchers to the field, the NIH will increase the number of opportunities available to direct increased resources to CFS research. It is also expected that by cooperating in planning these interdisciplinary initiatives, the many ICs working on CFS will increase cooperation in encouraging multidisciplinary and interdisciplinary CFS research as well cofunding such research.

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