Healthcare Provider Resource

January 12, 2016

Estimates vary, but at least one million Americans have ME/CFS and millions more suffer worldwide. Several studies have been conducted in the U.S. and other countries, but the difficulty in pinpointing a number arises from the different definitions and case criteria used over time and between research groups. More than 80% of people identified in community studies of ME/CFS have not been diagnosed and are not receiving appropriate medical care for their illness.

ME/CFS does not discriminate. It strikes people of all age, racial, ethnic and socioeconomic groups. Research has shown that it is 3-4 times more common in women compared to men, a rate similar to that of autoimmune conditions like multiple sclerosis and lupus. Teens are more likely to get ME/CFS than younger children, and adults are more likely to get ME/CFS than teens.

Researchers at DePaul University estimate that every year ME/CFS costs the U.S. economy $17-24 billion. Its prevalence, economic effect, disabling impact and chronicity make it one of the most burdensome conditions of our time.

As a healthcare provider, you play a critical role. By becoming knowledgeable about the diagnosis and management of ME/CFS and staying abreast of new information, you can provide a higher level of care to your patients and you can be on the cutting edge of addressing a challenging public health concernIACFSME_Primer_2014.


Federal Government Contacts

DHHS CFS Advisory Committee (AACFS)
The Chronic Fatigue Syndrome Advisory Committee provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

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The National Library of Medicine Web site is designed to direct you to resources that will help you research information on health topics. It includes a searchable database of published medical literature called MEDLINE. To request a MEDLINE search, contact your nearest regional medical library at 1-800-338-7657.

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PubMed, a service of the National Library of Medicine, includes over 14 million citations for biomedical articles back to the 1950’s. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.

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Centers for Disease Control and Prevention (CDC)
Address:    Centers for Disease Control and Prevention
NationalCenter for Infectious Diseases
Division of Viral and Rickettsial Diseases
Atlanta, GA30333

Phone:       404-639-1388 or 1-888-232-3228

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Disability Benefits

Clearinghouse on Disability Information
Address:    Office of Special Education and Rehab Services
U.S. Department of Education
Room 3132, Switzer Building
Washington , DC 20202

Phone:       212-205-8241
U.S. Social Security Administration
Phone:       Call your local social security office or 1-800-772-1213
(7:00 am – 7:00 pm ETweekdays)

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Other National Organizations

American Fibromyalgia Syndrome Association (AFSA)
Address:  PO Box 32698, Tucson, AZ  85751
Phone:       520-733-1570
Fax: 520-290-5550

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The National Fibromyalgia Association
Address:    2200 N. Glassell St., Suite A, Orange, CA 92865
Phone:       714-921-0150

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National Gulf War Resource Center
Address:    8605 Cameron Street, Suite 400, Silver Springs, MD  20910
Phone:       1-800-882-1316, ext. 119

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Health Professional Organizations

American Association for Chronic Fatigue Syndrome
Address:    27 N. Wacker Dr., Suite 416 , Chicago , IL 60606
Phone:       847-258-7248

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New Jersey ChronicFatigue Syndrome Center
Contact:   Dr. Benjamin Natelson
University of Medicine and Dentistry
MSB H-506
185 S. Orange Avenue, University Heights
Newark, NJ 07103-2714

Phone:      973- 972-5864

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NIAID Fact Sheet / National Institutes of Health
NIAID, a component of the National Institutes of Health (NIH), supports research on AIDS, tuberculosis, malaria and other infectious diseases, as well as allergies and immunology. NIH is an agency of the U.S. Department of Health and Human Services.


Prepared by:  Office of Communications and Public Liaison, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD 20892 , Public Health Services