Indeed!Bump: this opinion piece is getting alot of attention!
Hi, Zeynep. You are a special human to cover this as you did (although it shouldn't take a special human). As a 30 year sufferer of ME/CFS, I finally feel recognized for the scope of physical, medical, mental and societal torture I've endured. Just curious, how did you enter into our world? Did you know someone with ME/CFS?
@Pam Thank you. But indeed, it's not special. So, yes and no. Prepandemic, I knew of the illness, and I had watched Unrest, and had a connection to the director. I didn't have a personal tie or deep knowledge. Last year, I started researching Long Covid because I wasn't seeing sufficient coverage (gotten a bit better recently) and thought maybe I could contribute. Being an academic I dug into the history of postviral conditions. I'm also interested in depression and exercise, as one of my close friends suffers from it, and am normally sympathetic to the view that exercise is a great for health. Anyway, the more I dug in to the history and talked to people who had fallen ill over many decades, and read primary literature from aftermath of epidemics—going back to 1385—the more I was struck by the coherent narratives and the similarities, and realized this was likely similar to the case, say, peptic ulcers (caused by bacteria attributed to personality, finally figured out by a doctor who asked the right questions). Plus, as I spoke with patients with ME, my respect for their strength grew. It's so tough! I didn't see the anhedonia of depression as much as I saw limits. Plus, our culture makes it hard to accept just pushing through doesn't work. So, a community who deserves respect and support, a scientific mystery that could solve more ailments, and a big sociological component. That's a good intersection for my work. The least I can do is try to convey its reality.