Chronic Fatigue Syndrome Advisory Committee

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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


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

Upcoming meeting[edit | edit source]

CFSAC meeting minutes[edit | edit source]

  • 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[edit | edit source]

Articles about CFSAC[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]