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 an adult and having to depend on your mother to do your dishes, wash your clothes, do your grocery shopping, run your errands, bring you food and give you the only emotional support you get from anyone.
“Painful” is wondering what’s going to happen to you when your parents die and can no longer pay for your needs or be your caregivers.
This kind of daily pain is why the patients are upset, Dr. Coffin. We know you’re an experienced scientist and have done many important things in your career. We don’t think you necessarily know the depth of suffering that is going on out here in the real world of ME/CFS. It is hard to feel sorry for you when ... Read more>>