The Long Haul How Long Covid Survivors Are Revolutionizing Health Care

How survivors of the Covid-19 pandemic battling long-term disabling conditions are fighting for recognition and research—and helping to transform healthcare for many overlooked diseases.

To the world’s public health authorities, Covid-19 would be either a deadly disease for some or a simple respiratory illness for most, its symptoms clearing up in just a matter of weeks. But then tens of millions around the world got sick and stayed sick. With scientists and doctors caught off guard, these Long Covid patients often found solace only with one another, organizing support groups across oceans and continents while ill in bed. In The Long Haul, CNN journalist Ryan Prior weaves 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.

What Covid “long haulers” found was that their new illness was not so new. In fact, it resembled other post-viral syndromes: difficult to treat and neglected by science. In riveting and accessible prose, Prior follows an innovative band of patients who took matters into their own hands and researched the disease themselves, thereby flipping the script and illustrating a new paradigm for research. In these unprecedented times, the CDC and the WHO came to them. As Covid continues to circulate, its long-term effects could grow as well, weighing on the healthcare system for decades to come. But, as Prior shows, getting Long Covid  treatments right could help revolutionize care for all complex and chronic illnesses.

Ryan Prior is a journalist and former Journalist-in-Residence at the Century Foundation. He covered the COVID-19 pandemic as a features writer for CNN and writes the Patient Revolution column for Psychology Today. He has also written for USA Today, STAT, the Guardian, and the Nation. He directed the documentary Forgotten Plague, is a board member at the ME Action Network, and was a Stanford Medicine ePatient Scholar.

Contents
Preface to the Paperback Edition 9
1 A Future in Jeopardy 13
2 A Surprising Problem  27
3 A Groundswell of Patient Activism  43
4 Patients Become the Experts 72
5 A Lifelong Mission 90
6 We Predicted This 117
7 Covid for Christmas  131
8 Unraveling the Mystery  147
9 The NIH Goes Big 162
10 Gaslighting, Disbelief, and the Search for Answers 177
11 Chronicles of Uncertain Recoveries 195
12 Precursors: ME/CFS and Lyme 203
13 Theory of Everything  220
14 A New Epidemic of Disability 246
15 The ePatient Revolution and Crowdsourcing Research 263
16 Expectant Hope 277
Acknowledgments 289
Notes 293