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A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name

By Karen Lee Richards, ChronicPainConnection Lead Expert

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In Search of an Identity

ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) has been called the “Disease of a Thousand Names.” While 1,000 may be a bit of an exaggeration, there are or have been a number of different names used to describe this controversial illness at various times and in various parts of the world, among them: 

  • Myalgic Encephalomyelitis
  • Benign Myalgic Encephalomyelitis
  • Epidemic Neuromyasthenia
  • Chronic Epstein-Barr Virus Syndrome
  • Chronic Mononucleosis Syndrome
  • Raphe Nucleus Encephalopathy
  • Low Natural Killer Cell Disease
  • Atypical Poliomyelitis
  • Epidemic Vasculitis,
  • Chronic Fatigue Syndrome
  • Post-Viral Fatigue Syndrome
  • Chronic Fatigue Immune Dysfunction Syndrome
  • Myalgic Encephalopathy
  • Chronic Neuroendocrineimmune Dysfunction Syndrome
  • Neuroendocrineimmune Dysfunction Syndrome

A few of the names have referred to the location of specific outbreaks:

  • Iceland Disease
  • Akureyri's Disease
  • Royal Free Disease
  • Tapanui Flu

Historical Highlights

1860s – Dr. George Beard identified a syndrome (with many similarities to CFS) that he called neurasthenia.

1948 – An epidemic of an ME/CFS-type illness occurred in Akureyri, Iceland. Because the outbreak followed two clear cases of poliomyelitis, patients were first diagnosed with poliomyelitis but this was later discarded because no poliovirus was ever isolated in any of the patients.

1956 – ‘Myalgic encephalomyelitis’ (ME) was first defined in an editorial entitled, “A New Clinical Entity?” by A. Melvin Ramsay, MD, published in the Lancet. The article discussed several epidemic outbreaks that occurred in prior years.

1984 – The first documented clusters of CFS-like cases in the U.S. occurred in Lake Tahoe, Nev. and Lyndonville, N.Y. 

1985 – The National Institute of Allergy and Infectious Diseases held a consensus conference at which the name ‘chronic Epstein-Barr virus’ (CEBV) was used, causing CEBV to become the name of choice for a short time. Medical journals began referring to CEBV as a legitimate illness.

1986 – In a paper giving a definitive description of ME, A. Melvin Ramsay, MD says that the syndrome known as myalgic encephalomyelitis in the UK is called ‘epidemic neuromyasthenia’ in the USA.

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