By Lilly Meehan:
Dear Dr. Coffin,
I was sitting near you at the State of Knowledge NIH Workshop when you said that the patients’ online comments about you were “painful.” As the mother of a 25-year-old young woman who has been fully disabled with ME/CFS for ten years, and affected since childhood, I would like to tell you a little bit about “painful.”
“Painful” is being six years old and realizing there is something wrong with you because you cannot keep up with the other kids in a game of tag and are always “it” because you can’t run fast enough.
“Painful” is being fifteen years old and having ME/CFS hit you so hard you cannot get out of bed, go to school or do anything besides sleep.
“Painful” is hearing your doctor say to your mother, “If she were my daughter, I’d get her to go to school.” Read more>>