2006 – On August 9, Rich Carson, CFS patient and founder of ProHealth, Inc., launched the “Campaign for a Fair Name” and vowed not to stop until the name was changed once and for all. He began organizing a “dream team” of seven to 10 of the world’s leading CFS researchers to guide the patient community in developing a name that would be perceived as legitimate and acceptable to the medical establishment.
ME or ME?
Although dozens of different names have been suggested to replace CFS, the discussion always seems to come back to ME. The acronym ME can actually stand for either myalgic encephalomyelitis or myalgic encephalopathy. The term myalgic encephalomyelitis means muscle pain accompanied by inflammation of the brain and spinal cord, while myalgic encephalopathy indicates muscle pain and damage to the brain and spinal cord of unknown origin.
It’s not surprising that ME continues to rise to the top of the name-change pool. It has been used in medical literature for 50 years, which automatically gives it more familiarity and credibility in the medical community. Another point in ME’s favor is the fact that it is widely used in Europe and throughout much of the world (except for the U.S.).
What’s in a Name?
Thinking about the name chronic fatigue syndrome brings to mind two well-known quotes:
- More than 400 years ago in his play Romeo and Juliet William Shakespeare wrote, “What’s in a name? That which we call a rose by any other name would smell as sweet.” But I daresay if that rose was named ‘thorny branch’ after one of its prominent characteristics, few people would bother to smell it and discover its beautiful fragrance. Unfortunately the name chronic fatigue syndrome is the equivalent of thorny branch. Because CFS doesn’t sound all that bad, it is difficult to get the medical community, government and general public to look deeper and discover just how serious the illness is.
- Today a popular marketing mantra says, “Perception is reality.” While perception may not be actual reality (i.e., truth), it can drastically affect certain aspects of reality. For example, the perception that CFS is not a serious illness does not change the reality of its debilitating effects on patients. It does, however, affect how much money is allocated for research, whether disability benefits are awarded, and whether patients are treated as malingerers or as seriously ill individuals. The perception engendered by a name that trivializes the illness results in the reality of inadequate care and treatment for its sufferers.
