Two new books about Long COVID were published this month, and I’d like to recommend both of them to any readers interested in learning more about the condition—especially to other journalists covering COVID-19.
First, The Long COVID Survival Guide (from the Experiment Publishing, released November 8) is a compilation of essays from people with Long COVID, for people with Long COVID, edited by journalist and Body Politic founder Fiona Lowenstein. The book covers everything from getting a medical diagnosis to finding community with advocates for other chronic illnesses.
The Survival Guide is structured like a manual, every chapter ending with specific “survival tips” for long-haulers to use in their own Long COVID journeys. But it’s also a very relevant read for people who don’t have Long COVID, as it provides context about the different challenges long-haulers might go through: medical gaslighting, cognitive challenges, women’s health issues, learning to ask for help, and more.
Personally, I got a lot of ideas for future journalism projects from this book. As someone covering scientific research and data, I found the chapters about getting a diagnosis (by Dona Kim Murphey, Rachel Robles, and David Putrino) and about navigating Long COVID research (by Lisa McCorkell) particularly valuable.
Second, The Long Haul (from Simon & Schuster, released November 15) is a nonfiction narrative about how people with Long COVID came together to better understand the condition and advocate for themselves. Author Ryan Prior is a journalist with experience at CNN and other national outlets, and has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since he was a teenager.
Prior brings his lived experience and his journalistic experience—which includes covering other chronic illnesses and patient advocacy movements—to covering Long COVID. The book provides valuable backstories on major Long COVID groups, like Body Politic, the Patient-Led Research Collaborative, and the COVID-19 Longhauler Advocacy Project. It also describes early research efforts seeking to better understand Long COVID, including the first stages of the National Institutes of Health’s RECOVER study.
I’m still reading The Long Haul (as of this writing, I’m a couple of chapters in), but am already finding it incredibly helpful to learn about how Long COVID advocates started pushing for research and recognition, with context from ME/CFS and other post-viral illness work.
The Long COVID Survival Guide and The Long Haul might not be the most upbeat reading choices for the holiday season, but they’re really vital for anyone engaging with Long COVID—whether you’re a journalist covering this topic or a friend to a long-hauler. To quote from Dr. Akiko Iwasaki’s afterword, in the Survival Guide:
Long COVID has changed the narrative. The world no longer has any excuse to make the same mistake over and over again, as we have done for previous pandemic and endemic infections. It’s finally time for us to listen.
Transparency note: I received advanced copies of both of these books to aid in my work as a journalist covering Long COVID, but am not getting any compensation to write this post—i.e., this isn’t sponsored content or anything. I genuinely want more people to learn about and read these books!