Dr. Fred Friedberg, President of the IACFS/ME, requests that CFS/ME professionals and patient-oriented activists write letters to the CDC to Dr. Stephan Monroe with copies to Dr. Thomas Frieden regarding the selection of a new Chief of the Chronic Viral Diseases Branch at the CDC. See below for Dr. Friedberg’s request which is posted with his permission. (Thanks to Pat Sonnett of the Miami CFIDS Support Group)
Open Letter to CFS/ME Professionals:
Several weeks ago, the Centers for Disease Control issued a job announcement for Chief, Chronic Viral Diseases Branch. This includes primary responsibility for the direction and substance of the CFS research program. The program contains the largest single US budget for CFS research ($5 million/yr).
This is a critically important position that can influence science, practice, and health policy related to CFS. As such, we need a highly qualified individual to fill the position. According to the head of the search committee at CDC, several candidates will be recommended for further consideration. A permanent chief will probably be appointed in the next several weeks.
I am asking that you email the selecting official at CDC to urge him to select a new Chief, rather than continue with the current ineffectual leadership. The selecting official is Dr. Steve Monroe, Director of the Division of High-Consequence Pathogens and Pathology (firstname.lastname@example.org). Also, it is important to cc your letter to the CDC Director, Dr. Thomas Frieden (email@example.com).
Urging new leadership of the CFS program (i.e., Chief, Chronic Viral Diseases Branch) is based on the disappointments of the current leadership which has:
– conveyed an attitude of dismissal bordering on arrogance toward the external scientific and professional communities an attitude that has been ongoing for the past decade.
–downplayed the significance of new findings in retrovirology.
–advocated continued use of the discredited ‘empiric’ case definition of CFS/ME which folds in millions of people who are ‘unwell’ and do not fit strict Fukuda criteria for the illness.
–plans to embark on large scale behavioral studies in CFS/ME in its 5-year plan including a new CBT trial rather than focus on much needed biological studies.
I ask that you write a brief note to Stephan Monroe expressing your strong dissatisfaction with the current leadership of the CFS program and urge Dr. Monroe to select a new Chief, Chronic Viral Diseases Branch with strong leadership skills who constructively engages with the scientific and professional communities. This important ability would preferably include a shared vision of the direction of biomedical research in CFS— particularly in the challenging new domains of retrovirology and molecular medicine.
These emerging areas of scientific inquiry may lead to new models of intervention that can offer hope and help for long suffering CFS patients. Overall, we need open communication with the CDC/CFS program and fresh perspectives from their leadership–the qualities that could elevate this position to one that is viewed with renewed respect and credibility.
The CDC will listen to the professional community only if we make our voices heard.
If we do not, we are likely to be stuck with a research program and public policy that does not further our objectives of scientific advancement and improved patient care for long suffering CFS/ME patients.
With best regards,
Fred Friedberg, PhD