Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st – for the bi-annual Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
CFSAC is an important committee that provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.
The meeting is all-day-long from 9 a.m. – 5 p.m. EST; (6 a.m. – 2 p.m. PST). View the agenda.
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#MEAction serves as a non-voting liaison on CFSAC, providing our community an opportunity to give feedback and important insights on the discussion, and plans to raise the issues below. #MEAction will also make a presentation at the CFSAC meeting.
- Ask the NIH to respond to the community’s demand that the NIH develop a strategic plan for ME, as detailed in the community letter sent to Francis Collins.
- ICD-10 revisions
- CDC’s pediatric study
- Clinical care crisis and ongoing stigma
- VA – follow up about plans for ME medical education
The CFSAC meeting provides a key opportunity to raise issues with representatives from the following federal agencies: NIH, FDA, CDC, Dept. of Defense, Dept. of Veteran Affairs, Social Security Administration (SSA), Agency for Healthcare Research and Quality (AHRQ) and Health Resources and Services Administration (HRSA).
Preparing for the CFSAC meeting involves a team of dedicated volunteers with the support of the #MEAction staff. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email [email protected].
Learn more about CFSAC:
The Committee shall advise and make recommendations to the Secretary of HHS on a range of topics including:
(1) opportunities to improve knowledge and research about the epidemiology, etiologies, biomarkers and risk factors for ME/CFS;
(2) research on the diagnosis, treatment, and management of ME/CFS and potential impact of treatment options;
(3) strategies to inform the public, health care professionals, and the biomedical academic and research communities about ME/CFS advances;
(4) partnerships to improve the quality of life of ME/CFS patients;
(5) strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.
Please help us continue advocacy work like our involvement in CFSAC. Support our #MEAction 2018 Fundraising Campaign.