Reexamining Chronic Fatigue Syndrome Research And Treatment Policy

from the Health Affairs Blog, By David Tuller, February 4, 2016

wheelchair“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….

Investigating The PACE Trial

The other significant development last fall was the emergence of a powerful public challenge to the largest clinical trial of ME/CFS: investigators had reported in a 2011 Lancet paper that exercise and a form of psychotherapy were effective treatments. On November 13, 2015 leading scientists from Columbia, Stanford, Berkeley, and elsewhere issued a strongly worded open letter to The Lancet and its editor, Richard Horton, demanding that the journal seek an independent review of the study, called the PACE trial….

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