The CFS Name Change Advisory Board (NCAB) has amended its initial proposal and now recommends that the name for ‘chronic fatigue syndrome’ be changed to the acronym ME/CFS. (Note: Many illnesses are known by their acronym – e.g., HIV.) The resolution modifies their earlier recommendation that the ‘ME’ in ME/CFS should stand for Myalgic Encephalopathy.
The NCAB recommends the transitional use of ‘CFS’ in the new name for logistical reasons – primarily to prevent harming patients involved in disability and medical insurance issues, and to provide continuity in the research area. Ultimately, over time, the ‘CFS’ will be eliminated.
The Board encourages the change because the trivializing nature of the name ‘chronic fatigue syndrome’ negatively affects diagnosis, patient care, and research funding. Although estimates suggest that more than a million Americans have ME/CFS, less than 20 percent have been diagnosed. Even though doctors equate the experience of CFS with that of a cancer patient undergoing chemotherapy, few patients receive adequate medical care. The severity of CFS is as significant as that experienced with other serious diseases, such as multiple sclerosis, COPD, end stage AIDS, and kidney failure; yet CFS consistently ranks among the poorest federally funded diseases.
The Board’s resolution to propose the acronym ME/CFS demonstrates their sensitivity to disagreements within the patient community. Many patients insist that ME stands for Myalgic Encephalomyelitis, the name that has been commonly used to describe the illness in most countries for over 50 years. Others maintain that ME stands for Myalgic Encephalopathy, stating that encephalopathy is more diagnostically correct. The acronym ME removes the ‘which is best’ barrier. Many illnesses have several names. By supporting the acronym ME/CFS, we build unity within the patient community against the terrible harm that has been caused by the term chronic fatigue syndrome.
The NCAB includes eight of the most distinguished experts in the field, who collectively bring to bear more than 150 years of ME/CFS research and clinical experience. Members include Drs. Lucinda Bateman, Paul Cheney, David Bell, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson.