The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ‘ME/CFS’.
Every two years, on September 5, the CFSAC charter is renewed for another two years – so it came as a shock to the community when they received notice on Sept 6, 2018 that the CFSAC charter was not going to be renewed. According to the Federal Advisory Committee Management Handbook, several steps are required for renewal of a charter. One step in the process is a decision memo must be sent to the Secretary of HHS from the Operating Division or Staff Div head to the Secretary. The Designated Federal Official (DFO) was Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health. At this time we do not know if Commander Ceinos sent this memo.
MEadvocacy Advisory Committee member, Colleen Steckel, submitted an application in April 2018 to be considered for a position as a CFSAC voting member. Months passed with no updates on the nomination process raising uncertainty about the future of CFSAC.
An email requesting information about the timing of the next CFSAC meeting received the reply that a meeting was scheduled for Dec 11 and 12, but still no word about applicants being contacted for consideration.
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