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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

National Organization for Rare Disorders, Inc.

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.

Synonyms

  • Akureyri Disease
  • Benign Myalgic Encephalomyelitis
  • Epidemic Myalgic Encephalomyelitis
  • Epidemic Neuromyasthenia
  • Iceland Disease
  • Raphe Nucleus Encephalopathy
  • Royal Free Disease
  • Tapanui Flu
  • ME
  • CFS

Disorder Subdivisions

  • None

General Discussion

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.

Resources

National Chronic Fatigue Syndrome & Fibromyalgia Association

P.O. Box 18426

Kansas City, MO 64133

USA

Tel: (816)737-1343

Fax: (816)524-6782

Email: information@ncfsfa.org

Internet: http://www.ncfsfa.org



ME Association

7 Apollo Office Court

Radclive Road

Gawcott

Bucks, MK18 4DF

United Kingdom

Tel: 01280818964

Email: administration@meassociation.org.uk

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: cdcinfo@cdc.gov

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: ocpostoffice@niaid.nih.gov

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: cfids@cfids.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: info@ncf-net.org

Internet: http://www.ncf-net.org



CF-Alliance

P.O. Box 9204

Bardonia, NY 10954

Tel: (914)648-9197

Fax: (845)215-0041

Email: cf_alliance@yahoo.com

Internet: http://www.cfalliance.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: meruk@pkavs.org.uk

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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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 orphan@rarediseases.org

Last Updated:  4/8/2009

Copyright  1987, 1988, 1989, 2004, 2009 National Organization for Rare Disorders, Inc.

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