Important It is possible that the main title of the report Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.
Benign Myalgic Encephalomyelitis
Epidemic Myalgic Encephalomyelitis
Raphe Nucleus Encephalopathy
Royal Free Disease
Until the late 1980s, myalgic encephalomyelitis was thought to be a distinct, infectious disorder affecting the central, peripheral and autonomic nervous systems and the muscles. Its major symptom was fatigue to the point of extended periods of exhaustion. A group of experts studying the Epstein-Barr virus first published strict criteria for the symptoms and physical signs of chronic fatigue syndrome in 1988. This case definition was further refined in 1994.
The Fact Sheet for CFS published by the National Institutes of Allergy and Infectious Diseases of the National Institutes of Health states that "[T]oday, CFS is also known as myalgic encephalomyelitis, postviral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome." ME/CFS is now recognized as part of a range of illnesses that have fatigue as a major symptom.
ME/CFS is not rare. The CDC estimates that there are as many as 500,000 persons in the United States who have CFS-like symptoms. However, the disorder remains debilitating, complex and mysterious in origin, natural history, understanding and treatment.
National Chronic Fatigue Syndrome & Fibromyalgia Association P.O. Box 18426 Kansas City, MO 64133 USA Tel: (816)737-1343 Fax: (816)524-6782 Email: firstname.lastname@example.org Internet: http://www.ncfsfa.org
ME Association 7 Apollo Office Court Radclive Road Gawcott Bucks, MK18 4DF United Kingdom Tel: 01280818964 Email: email@example.com Internet: http://www.meassociation.org.uk
Centers for Disease Control and Prevention 1600 Clifton Road NE Atlanta, GA 30333 Tel: (404)639-3534 Tel: (800)232-4636 TDD: (888)232-6348 Email: firstname.lastname@example.org Internet: http://www.cdc.gov/
NIH/National Institute of Allergy and Infectious Diseases Office of Communications and Government Relations 6610 Rockledge Drive, MSC 6612 Bethesda, MD 20892-6612 Tel: (301)496-5717 Fax: (301)402-3573 Tel: (866)284-4107 TDD: (800)877-8339 Email: email@example.com Internet: http://www.niaid.nih.gov/
CFIDS Association of America PO Box 220398 Charlotte, NC 28222-0398 USA Tel: (704)365-2343 Fax: (704)365-9755 Tel: (800)442-3437 Email: firstname.lastname@example.org Internet: http://www.cfids.org
MAME, Inc. (Mothers Against Myalgic Encephalomyelitis) 1 Orne Square Salem, MA 01970 USA Tel: (978)744-8293 Fax: (978)744-2027 Email: MAME@mame-net.org Internet: http://www.mame-net.org
National CFIDS Foundation, Inc. 103 Aletha Road Needham, MA 02492-3931 Tel: (781)449-3535 Fax: (781)449-8606 Email: email@example.com Internet: http://www.ncf-net.org
Genetic and Rare Diseases (GARD) Information Center PO Box 8126 Gaithersburg, MD 20898-8126 Tel: (301)251-4925 Fax: (301)251-4911 Tel: (888)205-2311 TDD: (888)205-3223 Internet: http://rarediseases.info.nih.gov/GARD/
ME Research UK The Gateway North Methven Street Perth, PH1 5PP United Kingdom Tel: 01738451234 Email: firstname.lastname@example.org Internet: http://www.meresearch.org.uk
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email email@example.com
Last Updated: 4/8/2009 Copyright 1987, 1988, 1989, 2004, 2009 National Organization for Rare Disorders, Inc.
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