WHAT’S IN A NAME?

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It’s happened again: I’ve had a disease for so long, its name changed! When I was first diagnosed with Polycystic Ovary Syndrome (PCOS) in 1982, it was called Polycystic Ovary Disease. I have no idea how my disease became a syndrome, but sometime in the last three decades it did, and I didn’t know about it for years. In February 2015, The Institute of Medicine changed the name of my primary illness, Chronic Fatigue Syndrome, to Systemic Exertion Intolerance Disease. I’m both dispirited and encouraged by the name changes. On the one hand, something may be said for having illnesses for so long that science has redefined them. The name changes reflect deeper understandings of my medical conditions. On the other hand, the name changes make me feel old. But I’m also optimistic. Science is moving forward. With that forward movement, I hope treatment or even cures will follow. I could embrace those changes wholeheartedly.

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