Jennifer Brea: "We need to be willing to say 'I don't know.'"

Jennifer Brea gives a moving TED talk about the difficulties facing those with myalgic encephalomyelitis (ME), also commonly known as chronic fatigue syndrome (CFS).

Highlights:

  • Many doctors still think that ME or CFS is some form of conversion disorder, the modern name for hysteria, even though there is quite a bit of medical evidence that it is a biological disorder
  • Conversion disorder is a wholly unprovable condition--either that someone does or doesn't have it--but it is routinely applied to men and (especially) women with unexplainable medical conditions
  • 45% of patients who are ultimately diagnosed with recognized autoimmune disorders are initially told that they're hypochondriacs by doctors.
  • ME or CFS disproportionately affects women, but it does affect both genders. "If you’re a woman you’re told you’re exaggerating symptoms, but if you’re a guy you’re told to be strong or buck up.” So diagnosis can sometimes be even more difficult for men.
  • She concludes by saying: “We need to listen to patients’ stories. And we need to be willing to say 'I don’t know.' 'I don’t know' is a beautiful thing. 'I don’t know is where discovery starts.' And if we can do that. If we can approach the great vastness of all that we do not know, and then rather than fear uncertainty then maybe we can greet it with a sense of wonder."

See the video in its entirety here: