Committee Recommendations

May 16-17, 2007

CFSAC Recommendation #1

The magnitude of CFS warrants a strong call to action to address the unmet needs of this underserved population. CFS affects at least one million Americans, 85% of whom have not been diagnosed. The degree of functional impairment experienced by CFS patients is equivalent to patients with end-stage renal failure, COPD, and late-state HIV/AIDS.

The CFSAC has listened to public testimony at each of its meetings, and meeting after meeting patients and family members bring heart rending stories of limited access, physicians with no knowledge of diagnosis or treatment, and lives set aside waiting for effective treatment. These lives set on hold translate into an enormous economic impact, with families effected losing half of the household income, costs the U.S. economy $9.1 billion per year in lost productivity alone and up to $25 billion annually when medical costs are added to that estimate.

The lack of diagnostic markers and effective treatments, or even treatment guidelines, represents a crisis for evaluation and management of this large population. These factors in combination mandate the creation of innovative measures to focus resources on identifying solutions to these critical problems.

There have been basic science advances which should be leading to new treatment strategies, yet progress in translating these advances into effective treatments has been slow. This is in large part due to a complete lack of clinical care centers and research centers. Investigators are frustrated by a lack of access to representative patient populations, and patients are frustrated by a lack of accessible expert clinical treatment centers. Funding mechanisms to develop new centers for either clinical care or centers for research are shrinking, but the needs of this underserved very ill patient population are unmet and growing.

Therefore, the CFSAC recommends that the Secretary use the resources and talent of the agencies that make up the HHS to find ways to meet these needs. One starting point is our request that the HHS establish 5 regional clinical care, research, and education centers, centers which will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational and clinical research on CFS. The advisory committee understands that fiscal exigencies have to date prevented the formation of these previously recommended centers, but it is our hope the Secretary will use the full weight of his office to effectively fund this program through existing funding mechanisms that might be available or new programs.

CFSAC Recommendation #2

CFSAC recommends that the Secretary for HHS request the Surgeon General send a letter to state health departments, health professional education programs, national organizations for physicians, PAs, nurses, and other allied health professional groups informing them about the CDC and NIH CFS resources, including the CDC toolkit, CME course and other resources. Members of the CFSAC Education Subcommittee are willing to assist in the preparation of a 'briefing' for the Surgeon General about this matter.

Miscellaneous:

1. Committee requests the Chair and Executive Secretary to use the below language in drafting a letter to third party providers. "The Department of Health and Human Services Chronic Fatigue Syndrome (CFS) Advisory Committee is evaluating the medical care and rehabilitation of persons with CFS. We are seeking information from 3rd party providers as to classification and coverage for CFS. We are asking representatives of major medical insurance providers to present to the Committee how companies process claims for CFS. Specifically we would appreciate information as to standards for diagnosis of CFS and documentation of associated disability; what treatments are covered and to what extent; and, how rehabilitation and disability are assessed and covered. We would like to invite a representative of your company to provide the Committee a presentation as to how your company addresses these issues. -------"

2. Committee also requests a report from each relevant HHS agency on existing resources and programs for provider education that might be useful in disseminating information to providers on CFS diagnosis and management.