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Chronic Fatigue Syndrome Advisory Committee
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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.<ref>http://www.hhs.gov/advcomcfs/charter/index.html</ref> On September 7, 2018, the [[U.S. Department of Health and Human Services|HHS]] dissolved the committee by allowed its charter to expire with no prior public notice.<ref>{{Cite news |url =https://www.prohealth.com/library/chronic-fatigue-syndrome-advisory-committee-dissolved-demand-congressional-action-now-85826 | title = Chronic Fatigue Syndrome Advisory Committee Dissolved, We Demand Congressional Action Now - Prohealth | date = 2018-09-07|work=Prohealth|access-date=2018-09-07|language=en-US}}</ref> The committee held its first meeting in 2003,<ref>https://wayback.archive-it.org/3919/20140324192802/http://www.hhs.gov/advcomcfs/meetings/index.html</ref> 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).<ref>http://www.hhs.gov/advcomcfs/charter/index.html</ref> The meetings' minutes, public and written testimonies, and many speakers' presentations are available online at the [http://www.hhs.gov/advcomcfs/index.html CFSAC HHS.gov website].<ref>http://www.hhs.gov/advcomcfs/index.html</ref> 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.<ref>http://www.hhs.gov/advcomcfs/</ref> ==Charter== *[http://www.hhs.gov/ash/advisory-committees/cfsac/about-cfsac/charter/index.html Charter - Chronic Fatigue Syndrome Advisory Committee] ==2016 Charter Amendments== 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.<ref>https://www.federalregister.gov/documents/2016/10/26/2016-25916/renewal-of-charters-for-certain-federal-advisory-committees</ref><ref>https://www.gpo.gov/fdsys/pkg/FR-2016-10-26/pdf/2016-25916.pdf</ref> ==Final CFSAC member roster== The following roster is obtained from HHS.gov.<ref>https://www.hhs.gov/ash/advisory-committees/cfsac/about-cfsac/roster/index.html</ref> A list of prior members can be found [[List of Chronic Fatigue Syndrome Advisory Committee Members|here.]] '''Voting Members''' <div style="column-count:2;"> '''Chair''' [[Faith Newton]], Ed.D, Dover, DE, Term: 1 Jul 2014 to 7 Sep 2018 [[Alisa Koch | Alisa E. Koch, M.D.]], Ann Arbor, MI, Term: 16 Jun 2014 to 7 Sep 2018 [[Jose Montoya | Jose G. Montoya, M.D.]], Stanford, CA, Term: 16 Jun 2014 to 7 Sep 2018 [[Donna Pearson | 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 </div> '''''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 | Elizabeth Unger, M.D., Ph.D.]], Branch Chief, Chronic Viral Disease '''[[Food and Drug Administration]]''' ''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 '''[[National Institutes of Health]]''' ''Primary'' [[Vicky Whittemore | 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== *29-30 Jun 2017 :[https://www.hhs.gov/sites/default/files/lg/2017-06-29-cfsac-meeting-audio.mp3 Audio of Day 1] :[https://www.hhs.gov/sites/default/files/2017-06-29-cfsac-meeting-transcript.pdf Transcript of Day 1] :[https://www.hhs.gov/sites/default/files/lg/2017-06-30-cfsac-meeting-audio.mp3 Audio of Day 2] :[https://www.hhs.gov/sites/default/files/2017-06-30-cfsac-meeting-transcript.pdf Transcript of Day 2] *12-13 Jan 2017 :[https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-01-12/minutes-day-1/index.html Minutes - Day 1] :[https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-01-12/minutes-day-2/index.html Minutes - Day 2] *17-May 18, 2016 :[https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2016-05-17/cfsac-spring-2016-webinar-meeting-minutes-day-1/index.html Minutes - Day 1] :[https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2016-05-17/cfsac-spring-2016-webinar-meeting-minutes-day-2/index.html Minutes - Day 2] *18-19 Aug 2015 :[http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-aug18-2015-meeting-minutes.html Minutes - Day 1] :[http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-aug19-2015-meeting-minutes.html Minutes - Day 2] ==CFSAC Recommendations== *[https://wayback.archive-it.org/3919/20140324192829/http://www.hhs.gov/advcomcfs/recommendations/cfsac_recommendationschart.pdf CFSAC Recommendations Since September 2004 Sorted by Focus Area, Agency, and Progress, Last Updated: February 4, 2013] ==Links to the archived CFSAC website== 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: *[https://web.archive.org/web/20190128204917/https://www.hhs.gov/ash/advisory-committees/cfsac/index.html CFSAC Home Page as of January 2019] This covers late 2016 through 2018 *[https://web.archive.org/web/20160816090620/http://www.hhs.gov/advcomcfs/index.html CFSAC Home page as of 2016] This has snapshots from 2008 to 2016 and covers meetings from 2003 to 2016. ==Articles about CFSAC== *21 May 2016, [http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/ CFS Advisory Committee Meeting Outcomes] ==Learn more== *[http://www.hhs.gov/ HHS.gov] *[http://www.hhs.gov/advcomcfs/index.html CFSAC Advisory Committee] *[http://www.meadvocacy.org/giving_testimony_to_cfsac_and_a_call_to_do_more Article by ME Advocacy about August 2015 meeting] *[http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx 2003 Recommendations of the Name Change Workgroup to rename illness "neuroendocrineimmune dysfunction syndrome," or NDS] ==See also== *[[Health and Human Services]] *[[List of Chronic Fatigue Syndrome Advisory Committee Members]] ==References== {{Reflist}} [[Category:Organizations]] [[Category:US government agencies]] [[Category:Organizations based in the United States]]
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