The distance between researchers in the lab and the patients who benefit from research findings used to feel like a Grand Canyon-sized gap. However, over the past few decades, at least as far back as the HIV/AIDS epidemic of the 1980s, patients have played an growing role in research development and making research results available to the public.
Long COVID is accelerating patient involvement in, and direction of, research projects, according to a recent Washington Post article. As one person quoted article says, the patients with long COVID are the only experts we have right now. And one patient points out that typical research procedures, such as surveys, can be difficult for people with the brain fog and/or fatigue associated with long COVID to complete.