The Long COVID Survival Guide and the Role of Patients in Research

By David Tuller, DrPH

The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next—Stories and Advice from Twenty Long-Haulers and Experts” is pretty much what it sounds like. The anthology was published earlier this month, and each chapter is written by one or more contributors. The topics covered address long Covid through a variety of lenses–the biases of the health care system, financial impacts, the importance of pacing, the challenge of cognitive impairments, menstruation, disability rights, and so on.

I spoke earlier today with three of those involved in the book. Writer Fiona Lowenstein, the book’s editor, brought public attention to the issue of prolonged recovery early in the pandemic through a prescient opinion piece in The New York Times in April, 2020. Lowenstein is a founder of Body Politic, the wellness collective that generated early survey data about persistent symptoms after acute bouts of Covid-19. Our conversation also included two contributors to The Long COVID Survival Guide. Lisa McCorkell works with the Patient-Led Research Collaborative, which arose out of Body Politic’s efforts, and wrote about how to parse medical research; Padma Priya, an Indian journalist, wrote about the importance of peer-to-peer and community support, especially in countries with fewer medical resources.

Thanks to all three of them! I have posted the conversation on YouTube and below.