- Last Updated: 28 January 2023 28 January 2023
Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig
Sunday, January 22, 2023, 4 p.m. EST
Thank you for joining us as journalist and ME patient Ryan Prior read excerpts from his new book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, released November 2022 by Post Hill Press. He was joined by marketing specialist and Long COVID advocate Cynthia Adinig, whose experiences obtaining treatment are discussed in the book. Rivka Solomon, long-time ME/LC advocate and MassME member, hosted the meeting.
Following the readings, Ryan and Cynthia responded to questions and comments from Rivka and from the audience. The entire program lasted about 75 minutes.
Click here to view a recording of the presentation.
About the speakers
- Ryan Prior is a journalist and author who is currently a fellow/journalist-in-residence at The Century Foundation, a progressive think tank in Washington, D.C. He has written for CNN since 2015 and served as a science and health features writer during the COVID-19 pandemic. As a ME/CFS patient since his college years, his advocacy work has included directing the feature-length documentary Forgotten Plague: M.E. and the Future of Medicine, in 2015. He also sits on the board of directors of the #MEAction network, and is a five-time Stanford Medicine X ePatient Scholar.
- Cynthia Adinig began her Long COVID advocacy after a COVID infection in March 2020 led to disabling long COVID symptoms. She has worked with researchers on improving racial and disability inclusion for studies, and has been featured in the media discussing the bias she faced as a Black woman seeking life-saving care. This has included work with congress on the COVID-19 Long Haulers Act and the Select Subcommittee on the Coronavirus. She is a co-founder of BIPOC Equity Agency, and is also a board member of SolveME. Previously, Cynthia appeared on Mass ME/CFS’s panel for our October 2021 program, “Invisible Disabilities.”
- Rivka Solomon hosted the program. She is a long-time ME and Long Covid advocate and member of MassME.
About The Long Haul
As the global Covid-19 pandemic leaves millions with long-term disabling conditions, the survivors fight for recognition and research, which could ultimately help transform care for many overlooked diseases.
To the world’s public health authorities, Covid-19 would either be a deadly disease for some, or it would be a simple respiratory illness for most—cleared up in a couple of weeks.
But then tens of millions around the world got sick and stayed sick. With scientists and doctors caught off guard, these patients often found solace only in themselves, organizing support groups across continents while ill in bed. An innovative band of patients researched the disease themselves, flipping the script and illustrating a new paradigm for research. In these unprecedented times, the CDC and the WHO came to them.
Covid “long haulers” found their new illness wasn’t so new. It resembled a number of post-viral syndromes, hard to treat and neglected by science for decades. CNN journalist Ryan Prior weaves in his own life, the stories of activist patients, and the latest science into a captivating tale of regular people crying out for care that actually works. The stakes are high: As Covid continues to circulate, its long-term effects could grow as well, weighing on the health system for decades to come. But getting Long Covid treatments right could help revolutionize care for all complex, chronic illness.
“In this gripping, compassionate, and deeply reported narrative, Ryan Prior tells the story of Long Covid as it should be told, centering the experiences of people who predicted the condition, endured it, named it, and researched it. Long-haulers are the heroes of their own story, and this important book beautifully captures their struggle and their courage.”
– Ed Yong, Pulitzer Prize-winning science writer for The Atlantic
If you would like to purchase a copy of The Long Haul from an independent bookstore, we suggest purchasing from our partner Buttonwood Books and Toys. They are providing a 15% discount on the price (enter coupon code BOOK CLUB to receive the discount.) There is a charge for priority shipping (generally a 2-day arrival). Thank you!