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.[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


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[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]

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:

Articles about CFSAC[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.