TED Fellow Jen Brea was diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome … and was told that her symptoms were caused by something all in her head. She’s fighting back. Photo by Ryan Lash/TED.
What do you do when you are failed by medicine? Jennifer Brea can tell you. In 2014, while a grad student at Harvard, she came down with a puzzling constellation of symptoms: crippling exhaustion, hypersensitivity to sound, burning sensations — which she was told by doctor after doctor were “all in your mind.” Not buying that story and doing her own digging online, Brea found that millions of people around the world with similar symptoms had been diagnosed with chronic fatigue syndrome, a surprisingly widespread and bewilderingly under-researched phenomenon that (in Brea’s case) is also known as myalgic encephalomyelitis.
Inspired by the take-charge actions of the survivors of other mystery illnesses like AIDS, Brea became her own doctor, looking for new and unexplored treatments, and formed her own support system, connecting with other sufferers to find not only what they were feeling physically but emotionally, as they fight both the very real symptoms they’re feeling and the stigma around their disease, which up until recently was often called by a much more charged name: hysteria. These sufferers are fighting to have their illness studied seriously.
Nothing has cured her and few treatments have helped — but she’s not taking it lying down, She is making a documentary about people living with the disease, Canary in a Coal Mine, due out in 2017. Just because medicine doesn’t have answers doesn’t mean she’s going to stop asking questions.
from TED Blog http://blog.ted.com/the-story-of-a-baffling-illness-jen-brea-speaks-at-tedsummit/
via Sol Danmeri
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