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.

On September 7, 2018, the HHS dissolved the committee by allowed its charter to expire with no prior public notice.

The committee held its first meeting in 2003, 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). The meetings' minutes, public and written testimonies, and many speakers' presentations are available online at the CFSAC HHS.gov website.

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.

Charter

 * 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.

Final CFSAC Member Roster
The following roster is obtained from HHS.gov. 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

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 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
 * Audio of Day 1
 * Transcript of Day 1
 * Audio of Day 2
 * Transcript of Day 2


 * 12-13 Jan 2017
 * Minutes - Day 1
 * Minutes - Day 2


 * 17-18 May 2016
 * Minutes - Day 1
 * Minutes - Day 2


 * 18-19 Aug 2015
 * Minutes - Day 1
 * Minutes - Day 2

CFSAC Recommendations

 * 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: It's not known if all of the original content was archived but the meeting minutes and recommendations appear to be there.
 * CFSAC Home Page as of January 2019 This covers late 2016 through 2018
 * CFSAC Home page as of 2016 This covers meetings from 2003 to 2016.

Articles about CFSAC

 * 21 May 2016, CFS Advisory Committee Meeting Outcomes

Learn more

 * 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