The following is the statement that was presented by Dr. Friedberg (new President of the IACFS/ME) to the HHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) on behalf of the organization. Jill McLaughlin ___________________________ To: Chronic Fatigue Syndrome Advisory Committee From: Fred Friedberg, PhD President International Association for CFS/ME Date: May 28, 2009 Re: International Association for CFS/ME’s Recommendations for the CDC’s Five Year Strategic Plan for CFS Research As president of IACFS/ME, I would like to thank the CFSAC for this opportunity to comment on the CDC’s 5 year strategic plan for CFS research. The new director at CDC has the opportunity to reinvigorate CFS research, as well as reinstate CFS as a public health priority, as emphasized by Dr. Julie Gerberding at the November 2006 launch of the CDC’s CFS public awareness campaign. Unfortunately, the CDC’s draft five year strategic research plan lacks sufficient substance and detail. As such, the IACFS/ME is unable to directly respond to or endorse this plan. Rather, we suggest a single critical change in the CDC program: That change is to make CFS a public health priority. The IACFS/ME requests that the CDC declare CFS a public health priority. To achieve this goal, the CFS community needs strong and visionary new leadership from the CDC, the recognized world public health authority, to remove the enduring stigma associated with being a patient. This stigma and skepticism about the illness is also a deterrent to those professionals who would consider entering the field of CFS as researchers or clinicians. CDC’s own epidemiologic studies have identified more than a million CFS sufferers in the U.S. with as many as 85% still undiagnosed. Further, the CDC has indicated that CFS is a debilitating illness with an annual economic impact of at least $9.1 billion. Yet, CDC sponsors no prevention or clinical treatment research. This is a major concern given these 3 points: (1) the large number of severely ill and undiagnosed patients, (2) the inadequacy of current subjective diagnostic criteria for CFS, and (3) the absence of effective, evidence-based treatment options. We have put together 8 recommendations that CDC can enact to make CFS a public health priority: 1. The CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community. 2. The CDC should undertake high profile public and professional awareness campaigns to fully legitimize the illness of CFS and reduce its stigma. 3. The CDC should support extramural research into the pathophysiology of CFS in order to achieve the critical goals of objective diagnosis and effective treatment. Such efforts should eventuate in the identification of biomarkers that will justify: a. a new objective case definition; and b. the relabeling of CFS with a more appropriate and credible name. 4. In the spirit of public resource sharing, the CDC should make available research study protocols and the epidemiologic, clinical and laboratory data from all studies conducted by the CDC’s CFS research program since 1984. 5. The CDC should abandon its use of the empirical case definition for CFS (http://www.pophealthmetrics.com/content/5/1/5) and make a public statement in this regard. The empirical case definition has been highly criticized by expert CFS epidemiologists because it is overly broad and based on subjectively determined criteria (http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinition andPrev/tabid/105/Default.aspx). 6. The CDC should take a pro-active leadership position by exploring its potential role in developing an international clinical trials network in collaboration with clinicians, private industry and university-based researchers. 7. The CDC should partner with the IACFS/ME, the only national and international professional organization representing investigators and clinicians to develop evidence-based diagnostic and treatment guidelines for the management of CFS. 8. The CDC should work towards the implementation of the CFSAC recommendations (http://www.hhs.gov/advcomcfs/recommendations/index.html). We thank the CFSAC for this opportunity to comment on the CDC’s five year strategic plan. Both the CDC and IACFS should work together to achieve our mutual goals of establishing new evidence-based research programs, improving clinical care, and offering comprehensive healthcare provider education. Our ultimate objectives are (a) to eliminate the suffering caused by CFS and (b) to work toward the eradication of this serious illness. .