Reexamining Chronic Fatigue Syndrome Research And Treatment Policy

In recent months, two developments have provided some degree of optimism to people with the illness variously called chronic fatigue syndrome, myalgic encephalomyelitis (“inflammation of the brain and central nervous system, with muscle pain”), CFS/ME, and ME/CFS — the term often used these days by U.S. agencies. Taken together, these developments herald the welcome possibility of significant changes in research and treatment policies for the illness, which is estimated to afflict between 1 and 2.5 million people in the U.S. They also reinforce a critical but often overlooked point: patients can possess far more wisdom about their condition than researchers and policymakers guided by their own biases and misperceptions. New Research Effort On October 27, Francis Collins, director of the National Institutes of Health (NIH), announced a major new initiative to unlock the disease’s physiological mysteries. The announcement marked a significant shift away from the agency’s history of downplaying the illness; it was also an implicit admission of that longstanding neglect. In recent years, the NIH has spent only about $5 million annually on research, far less than the amount allocated for conditions with fewer sufferers but more effective lobbies, more powerful congressional supporters, or greater public awareness and understanding. Collins promised that more funding would be available. “It will be substantially greater than the current five or six million a year,...
Source: Health Affairs Blog - Category: Health Management Authors: Tags: Drugs and Medical Technology Equity and Disparities Featured Hospitals Public Health Quality chronic fatigue syndrome NIH PACE trial Research Source Type: blogs