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Roster

Voting Members

Chair
Susan M. Levine, M.D.
New York, NY
Term: 05/10/14 to 11/10/17

Dane B. Cook, Ph.D.
Madison, WI
Term: 05/10/14 to 11/10/17

Gary E. Kaplan, D.O.
McLean, VA
Term: 05/15/15 to 11/10/17

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

Faith Newton, Ed.D
Dover, DE 
Term: 07/01/14 to 07/01/18

Donna M. Pearson
Holland, MA
Term: 06/16/14 to 06/16/18

Vacant

Ex Officio Members

Agency for Healthcare Research and Quality (AHRQ)

The Agency for Healthcare Research and Quality's (AHRQ) mission is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services and with other partners to make sure that the evidence is understood and used.

The Agency completed an oft-cited evidence review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in 2014 with an addendum including sub-group analyses in 2016. The Agency has no current ME/CFS projects but remains ready to participate in future projects consistent with its mission pending available funding.

Primary
Theodore Ganiats, M.D.
National Center for Excellence in Primary Care Research

Centers for Disease Control and Prevention (CDC)

As the nation’s health protection agency, CDC works 24/7 to protect America from health, safety, and security threats both foreign and in the United States. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.

CDC’s myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) program works to improve the lives of those living with ME/CFS and their families. Since anyone can get ME/CFS and the illness affects children, adolescents, and adults, CDC is working to characterize and address the full spectrum of illness across the lifespan.  CDC seeks to update estimates on the numbers of Americans affected and assess the economic impact of this illness. CDC’s ME/CFS program also focuses on educating the public and healthcare providers about ME/CFS, identifying risk factors, and finding the cause or causes of ME/CFS.

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 (FDA)

The Food and Drug Administration (FDA) is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation's food supply, cosmetics, and products that emit radiation.  FDA also has responsibility for regulating the manufacturing, marketing, and distribution of tobacco products to protect the public health and to reduce tobacco use by minors.  FDA is responsible for advancing the public health by helping to speed innovations that make medical products more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medical products and foods to maintain and improve their health.  FDA also plays a significant role in the Nation's counterterrorism capability.  FDA fulfills this responsibility by ensuring the security of the food supply and by fostering development of medical products to respond to deliberate and naturally emerging public health threats.

FDA works with stakeholders, such as pharmaceutical companies, to support the development of drug products for a variety of diseases, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  The draft Guidance for Industry—Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products for Treatment outlines FDA’s expectations for drug approval for this disease.  FDA is working with stakeholders to help support the development of effective treatments for ME/CFS.

Primary
Janet W. Maynard, M.D.
Clinical Team Leader, Division of Pulmonary, Allergy, and Rheumatology Products
Center for Drug Evaluation and Research

Alternate
Keith Hull, M.D., Ph.D.
Center for Drug Evaluation and Research
Division of Pulmonary, Allergy and Rheumatology Products

Health Resources and Services Administration (HRSA)

The Health Resources and Services Administration aims to improve health and achieve health equity through access to quality services, a skilled health workforce, and innovative programs.  HRSA-funded programs include activities to advance education and best practices for ME/CFS.  For example, the National Center for Integrative Primary Healthcare, which aims to advance competency and evidence-based, integrative healthcare in primary care education and practice, developed an information sheet on ME/CFS for primary care providers and patients.

HRSA promotes best practices among its funded Health Centers by coordinating with partners at State and regional levels to provide training and technical assistance for health center providers. HRSA is exploring opportunities to include ME/CFS as a topic area.

Joel Nelson, MSW, MPH
Acting Director, Division of Nursing and Public Health
Bureau of Health Workforce

Social Security Administration (SSA)

The mission of the Social Security Administration (SSA) is to deliver Social Security services that meet the changing needs of the public. SSA’s vision is to provide the highest standard of considerate and thoughtful service for generations to come. SSA manages one of the Nation’s largest entitlement programs, the Old-Age, Survivors, and Disability Insurance (OASDI) program. SSA also administers the SSI program, which provides financial support to aged, blind, or disabled adults and children with limited income and resources. In developing the Agency Strategic Plan, SSA engaged internal and external stakeholders in their efforts to meet and exceed the stated Agency Strategic Plan goals through participation and collaboration. 

In regard to ME/CFS research, SSA works with agencies and other stakeholders. SSA continues to update its policy guidance on ME/CFS to keep it current with medical knowledge and practice: Social Security Ruling, SSR 14-1p, on ME/CFS. SSA is reviewing and considering updates to ME/CFS information available on its website. SSA also has an in-house continuing medical education (CME) on ME/CFS which will be available to SSA medical consultants by April 2017.

Primary
Cheryl A. Williams

Director, Office of Medical Policy

Alternate
Michele Schaefer

Office of Disability Policy

National Institutes of Health (NIH)

The National Institute of Health’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.

NIH supports research on ME/CFS by investigators in numerous academic institutions across the USA, as well as in Canada and the UK.  Research activities are coordinated by the Trans-NIH ME/CFS Working Group that is composed of representatives of 24 NIH Institutes, Centers and Offices.  In addition, the National Institute of Neurological Disorders and Stroke together with the Center for Disease Control and Prevention are working with ME/CFS stakeholders to develop Common Data Elements (CDEs) for ME/CFS in order to standardize data collection in research.

Vicky Holets Whittemore, Ph.D.
Program Director, National Institute of Neurological Disorders and Stroke

Department of Defense (DOD)

Primary
Pending

Department of Veteran Affairs (VA)

The mission of the Veterans’ Administration is to fulfill President Lincoln's promise “To care for him who shall have borne the battle, and for his widow, and his orphan” by serving and honoring the men and women who are America’s Veterans.

VA supports and promotes best practices in the care of Veterans with ME/CFS.  The VA/DoD Clinical Practice Guideline for the Management of Chronic Multisymptom Illness (CMI) was developed to address ME/CFS and other examples of medically unexplained chronic symptoms. The War Related Illness and Injury Study Center (WRIISC) is a national resource for research, education and clinical care about CMI in Veterans deployed to combat.

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)

Solve ME/CFS Initiative (formerly CFIDS Association of America)
Term: 5/2015 - 5/2017

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)
Term: 5/2015 - 5/2017

Learn more about nominating organizations to serve as non-voting liaison representatives.

Designated Federal Official

Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health

Content created by Office of the Assistant Secretary for Health (OASH)
Content last reviewed on May 24, 2017
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