'In April, 2020, a grassroots group, later called the Patient-Led Research Collaborative (P.L.R.C.), started surveying several hundred who remained sick for weeks after presumed covid infections. Their results, published in a Google Doc, became the first systematic study of patients with Long covid.'

https://www.newyorker.com/news/annals-of-inquiry/what-would-it-mean-for-scientists-to-listen-to-patients