Epidemiology

Long-term ME/CFS

A long-term study done by Dr. Leonard Jason, from DePaul University in Chicago IL, helps to answer the question of what is the longer term history of CFS. Data gathered for 213 patients, over a period of 15 years or longer, showed that 67% of individuals continued to fit CFS criteria; some who initially had idiopathic chronic fatigue, went on to develop full-blown CFS; and half of those who no longer had CFS, still had fatigue. Dr. Komaroff explained this suggests there is a continuum between full-blown CFS, idiopathic chronic fatigue, and normal health. Thus over time, some patients move back and forth between these categories. This study confirms that CFS is a chronic illness and in adults, it can persist for decades.

Understanding of ME/CFS by the medical community and the public

Two studies conducted by Dr. Elizabeth Unger, from the Centers for Disease Control and Prevention (CDC), show improvement in the overall recognition of CFS by the medical community and general public over the past 20 years. The first study focused on health care practitioners. Of the 2,000 surveyed, the majority of them (94%) had heard of CFS; 37% reported they had personally diagnosed cases of CFS in their practice; and about 14% of them still thought CFS was a psychiatric condition.

The second study surveyed 4,200 U.S. citizens. More than of half (57%) reported they had heard of CFS, while only 2% of the public still believed it was a psychiatric condition. Dr. Komaroff said that when thinking back to the first international CFS conference held in 1992, this data demonstrates substantial change in awareness and knowledge of CFS.