May 5-6, 2008
CFSAC voted unanimously to send the following recommendations to the Assistant Secretary for Health to be forwarded to the Secretary:
CFSAC recommends that the Secretary of Health and Human Services requests HHS operating divisions to produce a concept paper on CFS to be considered by the Office of the Surgeon General for development of a future Surgeon General’s workshop.
NOTE: A preamble of this recommendation was written by the Committee. The preamble follows the recommendation.
CFSAC recommends to the Secretary of Health and Human Services that the Centers for Disease Control and Prevention (CDC) consider the following specific individuals for its external peer review process of the CDC CFS research program: Drs. Lucinda Bateman, David Bell, Birgitta Evengard, Kenneth Friedman, Elke van Hoof, Anthony Komaroff, James Oleske, and Christopher Snell.
CFSAC recommends to the Secretary of Health and Human Services that CDC’s external peer review process focus on the CFS program’s progress on provider education , the search for specific diagnostic biomarkers and the identification of CFS’ etiology; evaluate CDC’s use of expertise outside the agency; and, evaluate CDC’s establishment of research priorities.
CFSAC recommends to the Secretary of Health and Human Services that the Administrator of HRSA communicate with each Area Health Education Center (AHEC) regarding the critical need for provider education of CFS. HRSA has the potential to disseminate information on CFS to a wide range of providers, communities and educational institutions. HRSA should inform these groups that persons with CFS represent an underserved population and that there is a dramatic need for healthcare practitioners who can provide medical services to CFS patients. HRSA should further inform these groups that the CDC offers a web based CME program on CFS at www.cdc.gov/cfs; and encourage AHEC providers to participate in this CME program. Additionally, HRSA should alert AHECs of the availability of a CDC CFS provider toolkit.
Preamble: Recommendation #1
CFSAC Meeting, May 5-6, 2008
Dear Secretary Leavitt:
Chronic fatigue syndrome (CFS) is a debilitating and complex syndrome characterized by profound fatigue and other serious symptoms. Population-based studies estimate that CFS affects more than one million people in the United States. These studies indicate that CFS is one of the more debilitating medical illnesses affecting our population, that it affects individuals who are at the prime of their work career, and that fewer than 20% of CFS patients in this country have been diagnosed. This has led to a significant medically underserved population compared to many other chronic diseases. The economic direct and indirect costs are estimated to be from $19 to $24 billion a year. Another study estimated a 37% decline in household productivity and a 54% reduction in labor force productivity among people with CFS. CFS patients are thus subject to both economic and health care disparities.
Over the past 20 years, basic and clinical researchers, through funding from the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), have tried to better understand the causes(s) and pathophysiology of CFS. Despite such efforts, the cause(s) of CFS remains unknown. As a result, most patients with this illness are not able to find informed medical professionals to treat their serious illness.
CFS represents a complex, difficult to treat condition that needs the attention of a Surgeon General’s workshop. In the late summer of 2007, members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) met with the Office of the Surgeon General (OSG) to ask the Acting Surgeon General to disseminate information about CFS to primary care providers and public health officials with the goal to link these individuals with resources on CFS diagnosis, clinical management and the status of research into the causes of CFS. At CFSAC’s most recent meeting in May 2008, we learned that the OSG is unable to disseminate this information at this time. We also learned that if a CFS concept paper from NIH and CDC was sent to the OSG, the Surgeon General might be willing to host a workshop on the topic. A workshop pulls together experts and science in order to review what is currently known. We further learned that such a Surgeon General’s workshop would result in a document summarizing the meeting and the vision put forth by the participants of the meeting. A workshop such as this can also serve to accelerate the search for additional science and therapeutic modalities that will help patients affected by CFS. The CFSAC would very much like to pursue this option.
CFSAC members hope that you will be willing to work with the NIH and CDC to develop a CFS concept paper as the first step in the process of having the Surgeon General host this important workshop. Our committee members, consisting of clinicians and researchers who focus on this illness, are most willing to help HHS in any way in the drafting of this concept paper.