In 1993, President Clinton signed legislation providing for three CFIDS-specific entities at the National Institutes of Health (NIH). Enforcement of these important provisions, part of the NIH Reauthorization Act, marked the beginning of the Association's work with federal health agencies to improve government 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 and, in some cases, strategic partnerships 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 CFIDS researchers and educators, ensuring accountability for funds spent, improving responsiveness to CFIDS 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 Michael Leavitt and Assistant Secretary John Agwunobi are directly involved in management and oversight. DHHS has an advisory committee on CFS, the CFSAC.

A clear understanding of the mission and capacities of individual agencies is the foundation for our work. Presently, CFIDS research funds are granted to academic researchers by NIH, CDC, and NIDRR; CFIDS 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 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. The FDA regulates pharmaceutical development and approval and DOL hears employment disputes, which sometimes involve injustices related to disability arising from CFIDS.

The CFIDS-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. However, diplomacy and compromise give way to more aggressive tactics when required to protect vital CFIDS interests. 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 CFIDS brings; it is also charged with coordinating federal efforts.

Recent Accomplishments
Numerous important strides have been made for the CFIDS community through the Association's efforts to work with federal health agencies. Among the most important recent achievements are the following:

• Publication of an SSA Ruling designating CFS as a potentially disabling condition, which has greatly improved access to Social Security disability benefits for eligible CFIDS patients
• Exposing CDC funding scandal and securing restoration of $12.9 million to CDC's CFS program 
• Issue of a $4 million Request for Applications by the NIH to stimulate interest in CFS research by senior investigators and young researchers. 

Learn More About Our Work with Federal Health Agencies
The CFIDS Chronicle, mailed quarterly to Association members reports on the Association's current activities with federal agencies. You can find these reports in the "DC Dispatch" feature in each issue. CFS-related information prepared by each agency is sometimes available on that agency's Web site.