Chronic Fatigue Syndrome Advisory Committee
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the U.S. Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health (ASH), on issues related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). According to its charter, these issues can include factors affecting access and care for persons with ME/CFS; the science and definition of ME/CFS; and broader public health, clinical, research and educational issues related to ME/CFS.[1]
The committee held its first meeting in 2003,[2] and meets at least twice a year. Meetings are open to the public (except as determined otherwise by the Secretary or other official to whom authority has been delegated), in keeping with the guidelines of the Sunshine Act, 5 U.S.C.552b(c).[3] The meetings' minutes, public and written testimonies, and many speakers' presentations are available online at the CFSAC HHS.gov website.[4]
The home of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) (pronounced "sif-sac") falls under the administrative and management support of the HHS Office on Women's Health and is lead by Commander Gustavo Seinos, MPH, Senior Advisor to the Director, Office on Women’s Health.[5]
Charter[edit | edit source]
2016 Charter Amendments[edit | edit source]
On Oct 26, 2016, U.S. Department of Health and Human Services announced that it had renewed the charter for the Chronic Fatigue Syndrome Advisory Committee thereby authorizing the Committee to continue to operate until September 5, 2018. Several amendments to the charter were also made:
- a fifth duty has been added to the Description of Duties in order to emphasize the importance of getting stakeholder input,
- removing the governmental agency Centers for Medicare and Medicaid Services (CMS) as a non-voting ex-officio member and replacing the position with two new ex-officio positions for the Department of Veterans Affairs (VA) and the Department of Defense (DoD),
- as per the recommendation of patient advocates the number of voting public members has been increased to 13 to give patients and/or caretakers of ME/CFS more representation on the Committee,
- the committee will report directly to Assistant Secretary for Health (ASH), making the ASH the official responsible for better monitoring and implementation of the recommendations that are approved by the Secretary.[6][7]
CFSAC Member Roster[edit | edit source]
The following roster is obtained from HHS.gov.[8]
Voting Members
Chair Faith Newton, Ed.D Dover, DE Term: 07/01/14 to 07/01/18
Alisa E. Koch, M.D. Ann Arbor, MI Term: 06/16/14 to 06/15/18
Jose G. Montoya, M.D. Stanford, CA Term: 06/16/14 to 06/16/18
Donna M. Pearson Holland, MA Term: 06/16/14 to 06/16/18
Amrit Shahzad, MBBS, MBA La Jolla, CA 12/13/2017 to 12/12/2021
Lucinda Bateman, M.D. Salt Lake City, UT 12/13/2017 to 12/12/2021
Gudrun Lange, PhD New York, NY 12/13/2017 to 12/12/2021
Vacant position
Ex Officio Members
Agency for Healthcare Research and Quality
Primary
Theodore Ganiats, M.D., Center for Evidence and Practice Improvement
Centers for Disease Control and Prevention
Primary
Ermias Belay, M.D. Associate Director for Epidemiologic Science, Director of High-Consequence Pathogens and Pathology
Alternate
Elizabeth Unger, M.D., Ph.D., Branch Chief, Chronic Viral Disease
Primary
Keith Hull, M.D., Ph.D. Center for Drug Evaluation and Research, Division of Pulmonary, Allergy and Rheumatology Products
Health Resources and Services Administration
Nomination Pending
Social Security Administration
Primary
Cheryl A. Williams, Director, Office of Medical Policy
Alternate
Michele Schaefer, Office of Disability Policy
Primary
Vicky Holets Whittemore, Ph.D., Program Director, National Institute of Neurological Disorders and Stroke
Department of Defense
Nomination Pending
Department of Veteran Affairs
Primary
Drew A. Helmer, MD, MS, Director- War Related Illness and Injury Study Center; VA - New Jersey Health Care System
Non-Voting Liaison Representatives to the Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Massachusetts CFIDS/ME & FM Association Term: 5/2017- 6/2019
Simmaron Research Inc. Term: 5/2017- 6/2019
MEAction Term: 5/2017- 6/2019
Designated Federal Official
Commander Gustavo Ceinos, MPH, Senior Advisor to the Director, Office on Women’s Health
Upcoming meeting[edit | edit source]
CFSAC meeting minutes[edit | edit source]
- 29-30 Jun 2017
- 12-13 Jan 2017
- 17-18 May 2016
- 18-19 Aug 2015
CFSAC Recommendations[edit | edit source]
Articles about CFSAC[edit | edit source]
- 21 May 2016, CFS Advisory Committee Meeting Outcomes
Learn more[edit | edit source]
- HHS.gov
- CFSAC Advisory Committee
- Article by ME Advocacy about August 2015 meeting
- 2003 Recommendations of the Name Change Workgroup to rename illness "neuroendocrineimmune dysfunction syndrome," or NDS
See also[edit | edit source]
References[edit | edit source]
- ↑ http://www.hhs.gov/advcomcfs/charter/index.html
- ↑ https://wayback.archive-it.org/3919/20140324192802/http://www.hhs.gov/advcomcfs/meetings/index.html
- ↑ http://www.hhs.gov/advcomcfs/charter/index.html
- ↑ http://www.hhs.gov/advcomcfs/index.html
- ↑ http://www.hhs.gov/advcomcfs/
- ↑ https://www.federalregister.gov/documents/2016/10/26/2016-25916/renewal-of-charters-for-certain-federal-advisory-committees
- ↑ https://www.gpo.gov/fdsys/pkg/FR-2016-10-26/pdf/2016-25916.pdf
- ↑ https://www.hhs.gov/ash/advisory-committees/cfsac/about-cfsac/roster/index.html