A small number of fully vaccinated people have become long-haulers after breakthrough infections, although no one knows how common such cases are, because they aren’t being tracked.
Mysteries abound; meanwhile, millions of long-haulers are sick.
Long-haulers were the ones who described, defined, and drew attention to their condition…. Now many feel that their expertise is being ignored and their hard-won knowledge is being excluded from investigations into their own illness. The message seems to be: Thanks for everything; academia can take it from here.
The risk is that long COVID becomes yet another neglected disease whereby some uncounted number of people become debilitatingly sick every year and fruitlessly bang for help on the door of an unconcerned medical establishment.
But a better future is also possible, in which long-haulers—vocal, united, and numerous—finally galvanize research into the long-term consequences of viral infections; in which such research proceeds quickly as patient experts become partners; in which the world gets ways of preventing and treating long COVID, ME/CFS, and other marginalized conditions; and in which the ents’ interminable meeting ends in action and victory.