Epidemiology/general

Lenny Jason (DePaul University, Chicago) discussed the Natural History of chronic fatigue (not Chronic Fatigue Syndrome) based on two studies performed—about 15 years apart—in an ethnically and socioeconomically diverse community population. In 1995-1997 his team examined 213 PWCs medically and psychologically. The prevalence of ME/CFS in 1995 was 0.42%. Sixty-seven percent of these individuals still had ME/CFS 15 years later. Interestingly, of the new cases of ME/CFS, 75% came from the earlier group with Chronic Fatigue, suggesting that this group is at higher risk for developing ME/CFS. On the other hand, 50% of the ME/CFS remitters still had severe Chronic Fatigue but no longer met case definition criteria. Of all variables studied, “post-exertional malaise” best distinguished PWCs from those with chronic fatigue alone.

“CFS Knowledge Among U.S. Healthcare Providers” was discussed by Elizabeth Unger MD PhD, the new head of ME/CFS at the CDC. Unger’s group used a web-based survey of primary care providers and a consumer mail survey to ask questions about CFS knowledge and management. Remarkably, 94% of providers had heard about CFS compared to only 57% of the public. When asked if CFS was both medical and psychiatric, 71% of providers agreed compared to 30% of the public. Fourteen percent of providers considered CFS purely psychiatric. Only 37% of providers had ever made the diagnosis of ME/CFS, and these were more likely to consider ME/CFS a medical condition. The top methods for management were listed as:  refer to a medical specialist (35%), prescribe drugs (29%), refer to a psychologist (26%), or prescribe graded exercise therapy (26%). Consumers would seek information about ME/CFS by talking to a family doctor (72%), searching the internet (54%) and talking to a medical specialist (25%). Only 7% would join a support group.

[Ed.note:  It is remarkable to me that over one-third of providers had diagnosed ME/CFS, but about 80% of persons with ME/CFS still have not been diagnosed. Providing internet tools and information to family doctors would seem to be the best method of educating both providers and consumers.]

The natural course of ME/CFS was described by Dr. Katherine Rowe, a pediatrician from Melbourne AU. She followed 788 children (ages 6-18, mean 15, male:female::1:3). She obtained a history and exam from 398 of them, who were then queried every 2 years, and 390 who provided history only were contacted in 2010-2011. Follow-up data was obtained on 86% and 78%, respectively. Bottom line: within 5 years 60% reported recovery and at 12 years 88% reported recovery, although one-third were consciously monitoring their activity. More than 95% were working or studying part or full time. What helped them most to recover were symptom management, continuing social contact, physical activity, and engagement in education (the best predictor of outcome). Massage and diet advice was helpful, but restrictive diets and supplements were not.

[Ed. note: To my recollection, Dr. David Bell reported an 80% recovery rate over 15 years in his Lyndonville population of children. This is in keeping with Rowe’s findings, which suggests that the prognosis for children is far better than for adults. Bell and Rowe have both pointed out, however, that “recovery” is relative, and many children must continue to pace, set limits, and monitoring activity well into adult life. Note that continuing engagement in education was the best predictor of outcome.]