Q:            Michele K asked, “Why do some CFS/ME specialists refer to ME as ‘myalgic encephalopathy’ and other refer to ‘myalgic encephalomyelitis’?   Doesn’t this add to patient and public confusion?”

A:            The term “myalgic encephalomyelitis” was coined by the British physician, Dr. Melvin Ramsay, in the 1950’s when he described an outbreak that occurred in London.  It is still used by British and many European specialists instead of the American-coined term, “chronic fatigue syndrome.”  Myalgic encephalomyelitis specifically refers to an illness characterized by abrupt onset following a viral-like infectious illness, and specifically describes fluctuating symptoms,  fatigue after minimal exertion (not daily fatigue), delayed recovery of muscle power after exertion, one or more symptoms of circulatory impairment, and significant neurological (cerebral) findings.  The term “myelitis” means inflammation of the spinal cord and has been generally discounted because there is no evidence of inflammation in the spinal cord.

                Myalgic encephalopathy has been used since 2007, when an ad hoc group of CFS stakeholders met finally and agreed to encourage the term as a substitute or surrogate term for Chronic Fatigue Syndrome.  This followed several years of debating various terms in an effort to “get the F-word out of Chronic Fatigue Syndrome,” and is thought to better represent the debilitating symptoms of CFS, namely muscle pain (myalgic) and neurocognitivbe difficulties (encephalopathy).  Member of the committee included Tony Komaroff, David Bell, Nancy Klimas, Rich Carson, Lenny Jason, Charles Lapp, Cindy Bateman, Kim McCleary, and Paul Cheney.

               The terms ME/CFS or CFS/ME have been generally used in an effort to encourage more use of the term “Myalgic Encephalopathy,”  while (temporarily) preserving the association with CFS, which is the medical search term used for this illness.

                Michelle, are you any less confused now?!