In 1993, President Clinton signed legislation providing for three ME/CFS-specific entities at the National Institutes of Health (NIH). Enforcement of these important provisions, part of the NIH Re-authorization Act, marked the beginning of the Association’s work with federal health agencies to improve government ME/CFS programs. Today the Association’s work extends beyond the NIH and Centers for Disease Control and Prevention (CDC), the nation’s largest federal biomedical research organizations, to include numerous health, research, and service organizations.
Overview of Activities
The Association maintains active dialogue with several federal agencies. Listed below are those agencies with which the Association is most actively engaged:
Department of Health and Human Services (DHHS)
National Institutes of Health (NIH)
- Centers for Disease Control and Prevention (CDC)
- Department of Education, National Institute of Disability and Rehabilitation Research (NIDRR)
- Social Security Administration (SSA)
- Health Resources and Services Administration (HRSA)
- Food and Drug Administration (FDA)
- Department of Labor (DOL)
Expanding the total funds granted to ME/CFS researchers and educators, ensuring accountability for funds spent, improving responsiveness to ME/CFS patients’ needs, and guiding future programs are the primary objectives of the Association’s agency-related activities.
The DHHS oversees the funding and programs of all the federal health agencies, including NIH, CDC, HRSA and FDA. Secretary for Health and Assistant Secretary are directly involved in management and oversight. DHHS has an advisory committee on ME/CFS, the CFSAC. Meetings of the Chronic Fatigue Syndrome Advisory Committee provide the opportunity to meet with agency officials in a public forum, gather information about agency programs, and to document commitments in an official written record. This committee exists to improve the utilization of federal resources to meet the challenges that ME/CFS brings; it is also charged with coordinating federal efforts.
A clear understanding of the mission and capacities of individual agencies is the foundation for our work.
- Presently, ME/CFS research funds are granted to academic researchers by NIH, CDC, and NIDRR; ME/CFS research is also conducted by CDC scientists and contractors.
- SSA determines public disability policy, provides financial assistance to qualified disabled persons, and has sponsored disability-related research on ME/CFS.
- HRSA is charged with improving distribution of health care services across the U.S. and is responsible for many maintaining many vital social service programs.
- FDA regulates pharmaceutical development and approval
- DOL hears employment disputes, which sometimes involve injustices related to disability arising from ME/CFS
The ME/CFS-related activities of these agencies, and others, warrant oversight by the Association and individual advocates. Establishing and maintaining productive relationships with key decision-makers in each agency is paramount to the success of these efforts; diplomacy and compromise give way to more aggressive tactics when required to protect vital ME/CFS interests.