A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988.
The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name.
The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward.
Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' – the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain.
'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) – a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.
Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition.
The CFS Name Change Advisory Board (left to right): Drs. Anthony Komaroff,
David Bell, Nancy Klimas, Leonard Jason, Charles Lapp, Lucinda Bateman, Paul Cheney.
The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed.
The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'.
In a recent related event, the board of directors of the International Association for CFS (IACFS) agreed to recommend that the name of that organization be changed to the IACFS/ME. The change was subsequently approved based on a poll of the organization's members.