http://www.senseaboutscienceusa.org/epistemically-challenged-julie-rehmeyer/
Excerpt:
Excerpt:
My thinking about science has been very strongly affected by my experience with chronic fatigue syndrome (CFS). Science has not served this illness well at all, and as a result, my perspective on the illness has been pushed from, “Okay, I’m going to use science to get better!” to “Wow—science is pretty shitty here.” I haven’t had have the luxury of saying, “Fine, I’m going to go work on something where the science is better.” I had to get better.
The experience has made me far less trusting of the institutions of science, and that has affected how I look at science more broadly. The CDC [Centers for Disease Control and Prevention], for example, has made some pretty big mistakes in handling CFS, mistakes that continue to hurt patients. For example, they created and pushed and continue to use a really broad definition of the disease that includes lots of patients whose primary problem is depression, or who may be just tired and stressed. Their definition doesn’t require the symptoms that are especially characteristic of the illness, particularly the way that too much exertion makes patients really, really sick (and for severely ill patients, by the way, “too much exertion” can mean brushing their teeth).
The CDC’s definition meant that ten times as many people qualified as having the disease—2.5 percent of the population! That has really confused the research, leading to findings that make it look like CFS is all in people’s heads. The CDC has also done a terrible job of educating physicians about the disease, recommending exercise and therapy prominently but pretty much nothing else. They even suggest that gradually increasing exercise can get bedbound patients back to daily functioning, though even the most optimistic studies show that to be unrealistic, and worse, exercise can permanently injure CFS patients unless done with extraordinary care...