The Solve ME/CFS Initiative is involved in advocacy efforts aimed at improving the research landscape for the early detection, objective diagnosis and effective treatment of ME/CFS. As part of this effort, we work to validate the burden of illness imposed by ME/CFS in agencies where national policy is made and executed.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). In addition to sitting on the CFSAC as a non-voting liaison member, SMCI has been involved in the CFSAC through encouraging patient involvement in meetings, by providing public testimony, and through serving on various sub-committees.
Every two years, the charter for the CFSAC must be renewed. With the last renewal being filed September 5, 2012, the charter is again up for renewal. SMCI understands the importance of having a federal advisory committee focused on issues related to ME/CFS and so on August 1, 2014 we wrote to the Secretary of Health and Human Services urging her to renewal the CFSAC charter.
We will keep you posted on the results of this request, a copy of which is posted below.
Sylvia Mathews Burwell
Secretary of Health and Human Services
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, D.C. 20201
August 1, 2014
Dear Secretary Burwell:
We are writing to urge you to renew the charter and fully fund the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC). The charter is set to expire on September 5, 2014.
The CFSAC was established to provide evidence-based advice and recommendations to you and the Assistant Secretary of Health on issues related to chronic fatigue syndrome (CFS). The issues can include factors affecting access and care for persons with CFS; the science and definition of CFS; and broader public health, clinical, research and educational issues related to CFS.
Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex and severely debilitating chronic illness that affects up to 4 million Americans, according to the CDC. ME/CFS is now recognized by most authorities, including CDC and NIH, as a severe and debilitating disease. Unrelenting exhaustion, widespread muscle and joint pain, cognitive impairments (particularly problems with memory and concentration), unrefreshing sleep, sore throat, headache, and a constellation of other symptoms are debilitating enough to dismantle careers and destroy active lifestyles. Its hallmark, post-exertional malaise, is a return or worsening of all symptoms following even modest physical or mental activity which can last for days or weeks.
Alarmingly, less than 20 percent of ME/CFS patients have been diagnosed, yet early detection and symptom management have been shown to improve the patient’s long-term outlook. The high prevalence of ME/CFS, its low rate of diagnosis and the annual economic toll of up to $25 billion demonstrates the need for increased public and policy-maker awareness and a more potent research effort.
Meetings of the CFSAC provide a vital opportunity for experts selected by the Department to listen to and exchange information with representatives of DHHS agencies, including the National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration, Agency for Healthcare Research & Quality, Food and Drug Administration and Social Security Administration. The CFSAC meetings also provide opportunities for patients and advocates to express support for or concerns about ME/CFS programs through public testimony. The CFSAC allows for greater transparency and accountability for ME/CFS programs, helping to ensure the most effective policies and utilization of federal resources dedicated to ME/CFS.
We urge you to renew the CFSAC charter before its September 5, 2014 expiration and to fully support its important work. We appreciate your consideration and look forward to receiving your response.
Carol E Head
President and CEO, Solve ME/CFS Initiative
cc: Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health
Designated Federal Officer for CFSAC