Recommendations for Consideration by the Education Subcommittee of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC)

June 2004

The CFIDS Association of America makes the following recommendations for expanding education of health care professionals about chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome, CFIDS, myalgic encephalomyelitis and M.E.). We have emphasized strategies with minimal cost implications, although we fully support more ambitious initiatives to dramatically increase funding for professional education as is justified by the magnitude of CFS and the breadth of educational needs and opportunities that exist.

1.  Identify federal networks of physicians and other health care providers and utilize these networks to promote availability of the self-study course about the diagnosis and management of CFS supported by the CDC. The course is approved for CMEs, CNE and CEUs and is available in print, DVD, video and online formats. There is no cost to the provider for taking this course.

• Commissioned Corps of the Public Health Service
• HRSA: providers working in CommunityHealthCenters (CHCs) and MigrantHealthCenters (MHCs); National Health Service Corps; staff health professionals
• NIH: staff and intramural health professionals, providers working in the NIH-supported clinical research centers
• CDC: staff health professionals, particularly those working in the NationalCenter for Chronic Disease Prevention and Health Promotion
• SSA: staff health professionals; providers working in state DSS offices
• FDA: staff health professionals
• Department of Veterans Affairs: VA Center staff professionals
• Department of Defense: providers working on military bases and hospitals

2.  Utilize the online self-study course as a training opportunity for state and federal adjudicators of Social Security Disability Income applications, in keeping with SSA’s commitment to refresh training about CFS and SSR 99-2p. (It is possible to help SSA track utilization and completion of the course by SSA and DSS employees.)

3.  Inform program staff working in HRSA-supportedAreaHealthEducationCenters of the availability of trained speakers and self-study courses about CFS to help them meet programming needs for the providers-in-training and providers-in-practice they serve.

4.  Initiate contact with the Council on Linkages Between Academia and Public Health Practice, a project supported by HRSA through the Association of Schools of Public Health. Explore opportunities to expand the availability of information about CFS, develop means of promoting existing resources for practitioners (including self-study materials described above) and identify other opportunities for collaboration. The Council has several communication mechanisms, including a website, print publications and e-newsletters, to disseminate information about topics of interest and concern to the health care community.

5.   Utilize Public Health Training Centers (supported by HRSA) and Centers for Public Health Preparedness (supported by CDC) to develop and disseminate information on best practices in the care of CFS patients.

6.  Include CFS as a topic of training at regional and national conferences of providers convened by HRSA’s Bureau of Primary Care.

7.  Regularly review and update CFS information on the federal health agencies’ websites and the CFSAC site ( http://www.hhs.gov/advcomcfs/index.html) to ensure the most accurate information is available to health care providers and the public. Post to the CFSAC and agency websites agency updates provided to the CFSAC soon after each public meeting of the CFSAC.

8.  Utilize NIH and/or CDC communications offices to disseminate press releases about CFS research publications for all studies supported by federal funds. On the sponsoring agency’s website and the CFSAC website, provide links to or text of published research reports.

Respectfully submitted:

K. Kimberly (Kenney) McCleary
President & CEO
The CFIDS Association of America

June 17, 2004