ME/CFS

The acronym ME/CFS is commonly used as an umbrella term to cover the various case definitions used to describe Myalgic Encephalomyelitis (ME) and/or Chronic Fatigue Syndrome (CFS) around the world. Case definitions vary widely, with some being so broad as to cover numerous unrelated illnesses. Even among the narrower case definitions, it is unclear if (ME) is equivalent to (CFS), a specific form of it, or something entirely different. In ME/CFS research, the terms are often used synonymously, though there is no clear evidence to support either equating them or separating them.

History
The first recorded outbreak of Myalgic Encephalomyelitis was at Los Angeles County Hospital in 1934. The name Myalgic Encephalomyelitis first appeared in medical literature in 1956. The World Health Organization (WHO) recognized ME as a distinct disorder and classified it as a specific neurological disorder in 1969. The term CFS was first used in medical literature in the 1980s in the United States; the name change occurred when the Centers for Disease Control & Prevention (CDC) literature began using the name CFS. "The criteria focused on fatigue and not as much on the encephalitic (inflammation of the brain) features of the disorder." Doctors began using ME and CFS interchangeably due to the broad CFS definition in the late 1990s and early 2000s.

The 1984 Incline Village chronic fatigue syndrome outbreak was an outbreak that lead to the name Chronic Fatigue Syndrome.

The ME name was not fully accepted by the medical and government health agencies while CFS was not found to be acceptable by patients and some health practitioners.

The Canadian Consensus Criteria (CCC) developed in 2003 was the first time the ME/CFS name and acronym was used.

In 2006, Rich Carson, founder of ProHealth, started a name change campaign. The term ME/CFS was proposed in 2007 at the International IACFS/ME Research and Clinical Conference and in 2008 Invest in ME called for unity in using the name.

Why the acronym ME/CFS is used
Solve ME/CFS answer in Reader Questions: "Why does your organization call this disease ME/CFS?" in its [http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017.pdf The Solve ME/CFS Chronicle Winter 2017 Edition, Pg. 18. PDF]

Number afflicted and lost wages
ME/CFS afflicts up to 2.5 million Americans (and an estimated 17 million worldwide) and in the USA there are lost wages of $17-24 billion a year. The US numbers came from the Institute of Medicine report which used the Fukuda criteria (for defining CFS in research) and CCC (which defines either ME or CFS in research or a clinical level). The numbers of those meeting the ME or CFS criteria alone are unknown.

Controversy
Dr. Nancy Klimas discusses the ME and CFS name controversy. Dr. Klimas was one of the authors of CCC.

It is believed by some in the ME, CFS and ME/CFS community that the name Chronic Fatigue Syndrome and then the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome name are a product of medical insurance companies, possibly in an effort to define the disorder as a behavioral illness similar to hypochondria or malingering. Insurance companies could benefit from this viewpoint, since behavioral illnesses are much less expensive to treat than physical illnesses, and in many cases, are not covered by insurance at all.

Learn more

 * Definitions of ME and CFS
 * Forgotten Plague
 * Osler's Web
 * Thirty Years of Disdain