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Showing posts from April, 2016

Since It's Multiple Choice, I'll Pick SEID

Those who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true.

I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it."

This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would so…