Chronic Fatigue Syndrome Advisory Committee
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provided 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 included 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]
On September 7, 2018, the HHS dissolved the committee by allowed its charter to expire with no prior public notice.[2]
The committee held its first meeting in 2003,[3] and met at least twice a year. Meetings were 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).[4] The meetings' minutes, public and written testimonies, and many speakers' presentations are available online at the CFSAC HHS.gov website.[5]
The home of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) (pronounced "sif-sac") fell under the administrative and management support of the HHS Office on Women's Health and its last leader was Commander Gustavo Seinos, MPH, Senior Advisor to the Director, Office on Women’s Health.[6]
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.[7][8]
Final CFSAC member roster[edit | edit source]
The following roster is obtained from HHS.gov.[9] A list of prior members can be found here.
Voting Members
Chair Faith Newton, Ed.D, Dover, DE, Term: 1 Jul 2014 to 7 Sep 2018
Alisa E. Koch, M.D., Ann Arbor, MI, Term: 16 Jun 2014 to 7 Sep 2018
Jose G. Montoya, M.D., Stanford, CA, Term: 16 Jun 2014 to 7 Sep 2018
Donna M. Pearson, Holland, MA, Term: 16 Jun 2014 to 7 Sep 2018
Amrit Shahzad, MBBS, MBA, La Jolla, CA, 13 Dec 2017 to 7 Sep 2018
Lucinda Bateman, M.D., Salt Lake City, UT, 13 Feb 2017 to 7 Sep 2018
Gudrun Lange, PhD, New York, NY, 13 Dec 2017 to 7 Sep 2018
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
CFSAC meeting minutes[edit | edit source]
- 29-30 Jun 2017
- 12-13 Jan 2017
- 17-May 18, 2016
- 18-19 Aug 2015
CFSAC Recommendations[edit | edit source]
Links to the archived CFSAC website[edit | edit source]
The CFSAC page on the HHS website was removed in January 2019. The website as it existed in late 2016 had already been archived to the Wayback Machine. The most recent website and the archived website can be accessed through the following links:
- CFSAC Home Page as of January 2019 This covers late 2016 through 2018
- CFSAC Home page as of 2016 This has snapshots from 2008 to 2016 and covers meetings from 2003 to 2016.
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
- ↑ "Chronic Fatigue Syndrome Advisory Committee Dissolved, We Demand Congressional Action Now - Prohealth". Prohealth. September 7, 2018. Retrieved September 7, 2018.
- ↑ 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
