Saturday, December 5, 2015

Our Two Minutes of Fame: Collins talks about ME/CFS on Charlie Rose

Francis Collins, head of the NIH, was interviewed on Charlie Rose on November 23, 2014. It was a long interview, and until now it was available only on Hulu. Some thoughtful person has made a clip of the roughly two minutes Collins talked about ME/CFS.

Two minutes may not seem like much air time, but it's exactly two minutes longer than any head of the NIH has afforded this disease in the last three decades. To his credit, Dr. Collins did not try to soft-pedal the illness.


Rose: I saw something, it may have been associated with NIH, about chronic fatigue.

Collins: I've been puzzled and frustrated about how little we understand about this condition. Chronic Fatigue Syndrome, people who have that diagnosis, it's a very heterogeneous collection of individuals, but the Institute of Medicine has just sort of defined what it is limited to: people who are profoundly affected by fatigue, oftentimes coming after an acute … you can't get out of bed. You are disabled, you are utterly unable to carry out daily activities. You have other things. Exertion seems to make you worse instead of better, and you have sleep disorders. Sleep is not refreshing as it should be. You may have postural hypotension, where you stand up and your blood pressure drops, and then you pass out. It's serious stuff, and it's particularly frustrating to see cases, and there are hundreds of thousands of them, of people who were healthy, and then have what appears to be a flu-like illness, but they go to bed and then they can't get up for months.

So we just announced that we are going to make a big push to try to get an answer here. Bring some of these new technologies, of genomics, and proteomincs, metabolomics and imaging and figure out what is going on in this condition. And if we understood that maybe we'd know what fatigue of other sorts is all about. Why do people on chemotherapy get fatigue? We don't really know. Wouldn't it be nice to have that answered?
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