How Long COVID Survivors Are Revolutionizing Health Care

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03/27/2024

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Credit: The MIT Press, 2024.

“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 journalist for the Atlantic

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Cambridge, MA, March 26th, 2024.  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 TodaySTAT, 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.

“This is a timely and important contribution to our understanding of Long Covid, which has affected tens of millions of people around the world and will impact health systems for years to come.”
Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization

“I’ve had low-level nerve tingling symptoms ever since I got Covid in March 2020. I started to talk about it when I heard repeated stories of others whose more serious symptoms were being dismissed and doubted. Ryan Prior brings these stories to light, shows how patients’ advocacy pushed research into causes and cures, and illuminates how many questions we still need to answer. A book we need right now.”
US Senator Tim Kaine

“Ryan Prior brings out the heart of the story simply because he puts his whole self into telling it empathetically and with utmost compassion. Matched with his passion for curiosity, it makes for a story not only worth telling but worth reading with insatiable interest.”
Stephanie Land, New York Times bestselling author of the book and Netflix series Maid



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