Washington Post: Long covid could change the way researchers study chronic illness

In a recent essay by Rachel E. Gross and Lorraine Boissoneault, science and history writers, in the Washington Post, titled “Long Covid could change the way researchers study chronic illness“, the authors point to how the current efforts in patient-led and patient-involved research for Long Covid has the potential to shed light on other forms of chronic illnesses, that have long been neglected as objects of biomedical research. The authors review the current attempts at the National Institutes of Health and their Recover Initiative to study Long Covid and difficulties of patients in getting in the room and shaping the research being conducted.

As the authors write:

But advocates say the program’s success depends on whether patients have a meaningful role in shaping the questions researchers ask and the way they go about answering them. They fear that if experts spurn the research efforts and knowledge that longtime patients bring to the table, they will end up reinventing the wheel. And time lost means more and more Americans hobbled with an illness that could last a lifetime…

For many of the patient advocates, what’s at stake isn’t just an improvement in their own health but a sea change in how medical research is conducted. If patients are treated as equal partners in the research process, as experts in their own illnesses, think what insights might be gained and how much faster treatments might be found. Recover might not only pave the way in long covid; it could lay the groundwork for future research on infectious diseases and chronic illnesses.