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The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever
Silver Award Winner in “Rising To The Moment Focused COVID Pandemic” Category of the Nautilus Awards
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 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.
“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 Maid , one of President Obama’s top picks of 2019 and now a Netflix original series
“Ryan Prior’s years of both living with and reporting on chronic disease for major publications makes him ideally suited to write a book about Long Covid. Because he has led the field by helping author principles guiding other science writers in covering contested diseases, he can cover this topic with all the scientific nuance, literary poise, and human empathy it requires. His book could be an example in future decades of how to cover the new epidemics we will undoubtedly see.” —Pam Weintraub, author of Cure Inside the Lyme Epidemic
“As a CNN features writer, Ryan has shown a keen nose for compelling human stories and the reporting chops to deliver.” —Brian Vastag, former science reporter for The Washington Post
“Ryan Prior’s passion, to both get the story right and bring it alive using amazing storytelling skills, makes his work incredibly important and engaging. His experience living with chronic illness, and his years of writing about it, will all combine to make his book on Long Covid an essential read.” —Tracie White, author of The Puzzle A Scientist’s Quest to Cure the Illness that Stole His Son
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 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.
“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 Maid , one of President Obama’s top picks of 2019 and now a Netflix original series
“Ryan Prior’s years of both living with and reporting on chronic disease for major publications makes him ideally suited to write a book about Long Covid. Because he has led the field by helping author principles guiding other science writers in covering contested diseases, he can cover this topic with all the scientific nuance, literary poise, and human empathy it requires. His book could be an example in future decades of how to cover the new epidemics we will undoubtedly see.” —Pam Weintraub, author of Cure Inside the Lyme Epidemic
“As a CNN features writer, Ryan has shown a keen nose for compelling human stories and the reporting chops to deliver.” —Brian Vastag, former science reporter for The Washington Post
“Ryan Prior’s passion, to both get the story right and bring it alive using amazing storytelling skills, makes his work incredibly important and engaging. His experience living with chronic illness, and his years of writing about it, will all combine to make his book on Long Covid an essential read.” —Tracie White, author of The Puzzle A Scientist’s Quest to Cure the Illness that Stole His Son
336 pages, Hardcover
First published November 15, 2022
16 people are currently reading
188 people want to read
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Displaying 1 - 19 of 19 reviews
January 17, 2023
Working in a hospital emergency department I see the effects of both Covid infections and long Covid first hand and it can often be debilitating and heartbreaking to see. I found this book incredibly interesting with how it explored the effects of long Covid compared with other chronic or terminal illnesses. I really enjoyed Prior's writing style as it made a topic that can be very daunting and technical pretty easy to read and understand.
4/5 stars. Thank you to NetGalley and the author, Ryan Prior, for this copy to review.
4/5 stars. Thank you to NetGalley and the author, Ryan Prior, for this copy to review.
May 22, 2023
This is such a thorough and thoughtful look at the beginning of Long Covid and all the work that has been done to find ways to treat the many symptoms. What surprised me was that Long Covid is so similar to other chronic health issues that have resulted from other viruses, but it really does make sense. I also appreciate how the author examined so many dimensions of Covid and Long Covid. There is hope, he shows, in that this is the first time that patients of chronic illnesses have gotten through to scientists and doctors. In the past, people who suffer from, say, Lyme’s disease would not be able to get proper medical attention because doctors would just say it was psychosomatic. But that has changed with Long Covid because millions of people have gotten it all within a few years. So it’s something the medical field cannot and does not ignore. This is good news! Even the CDC recognizes it. This book is easy to understand and something everyone who cares about their health should read. It affects all ages and backgrounds.
November 28, 2022
As someone whose husband has Long Covid, I was eager to get my hands on this book. It was like finding someone speaking my language finally. Prior has dealt with ME/CFS and was dealt the cruel blow of Long Covid as well. He understands our pain.
There is every facet of Long Covid in this book: Prior’s experience but also current theories, Long Covid beginnings, various support groups, comparisons to ME/CFS and Lyme disease among many.
I hope at some point books like this aren’t needed but I will use this as a reference book as well.
Thank you for writing and publishing this book.
There is every facet of Long Covid in this book: Prior’s experience but also current theories, Long Covid beginnings, various support groups, comparisons to ME/CFS and Lyme disease among many.
I hope at some point books like this aren’t needed but I will use this as a reference book as well.
Thank you for writing and publishing this book.
February 14, 2024
As someone who has lived with PASC since 2020, it was really cathartic to hear how other people experienced the same things that I have, not just physically, but emotionally as well.
The book’s author has lived with ME/CFS since he was a teenager, and developed long COVID during this interminable pandemic. He is able to tell us the story of PASC through the eyes of someone who has been dealing with post viral illness for decades, and had already linked up with many of the key PASC players while writing articles and producing a documentary on ME/CFS.
Overall, I have great hope after reading this book, and am happy that if there is a silver lining, millions of people who have lived with chronic fatigue illnesses may finally get the help they need, due to all the money that is finally flooding in for research into Long COVID.
The book’s author has lived with ME/CFS since he was a teenager, and developed long COVID during this interminable pandemic. He is able to tell us the story of PASC through the eyes of someone who has been dealing with post viral illness for decades, and had already linked up with many of the key PASC players while writing articles and producing a documentary on ME/CFS.
Overall, I have great hope after reading this book, and am happy that if there is a silver lining, millions of people who have lived with chronic fatigue illnesses may finally get the help they need, due to all the money that is finally flooding in for research into Long COVID.
August 3, 2023
So many illnesses have an enormous resource that researchers and doctors completely disregard: the patient base. This is an interesting and informative look at how LHC patients are changing that.
November 18, 2022
As a journalist and advocate living with ME/CFS for over a decade, and now experiencing long COVID, Ryan was uniquely positioned to write The Long Haul. Ryan approaches the topic with the care, thoughtfulness, and attention to detail post-viral illnesses deserve, weaving his own story together with narrative accounts from people living with long COVID and researchers trying to unlock post-viral illnesses like long COVID and ME/CFS.
Having known Ryan since 2014, I have eagerly awaited The Long Haul since summer, but I didn’t know just how immersed I’d become in this book. Do not make the “mistake” of starting this at 12:50 AM, or you will be having a very late night as I did—captivatingly written, I also can’t wait for the audiobook to hear this story in Ryan’s voice.
Regardless of current personal connection to long COVID or post-viral illness, The Long Haul is an important and thorough look at public health, healthcare, and most importantly, the strength and power of patients to support each other… and cultivate systemic change together.
Having known Ryan since 2014, I have eagerly awaited The Long Haul since summer, but I didn’t know just how immersed I’d become in this book. Do not make the “mistake” of starting this at 12:50 AM, or you will be having a very late night as I did—captivatingly written, I also can’t wait for the audiobook to hear this story in Ryan’s voice.
Regardless of current personal connection to long COVID or post-viral illness, The Long Haul is an important and thorough look at public health, healthcare, and most importantly, the strength and power of patients to support each other… and cultivate systemic change together.
July 11, 2024
Interesting topic, but I'm not sure I got a lot out of the book.
It primarily focused on upper-middle class millennials, which there's nothing wrong with, but not something I'm that interested to read about. A lot of journalists and coders and product managers and stuff getting really anxious, with some obligatory nod to other demographics. It was also accidentally very US-focused, which, again, nothing wrong with that, but it's not as interesting or new to read about.
He was also kind of undisciplined with language -- used "severe" and "moderate" inconsistently at one point. Kind of minor, but also that's kind of the point of the book is to understand severity of this stuff. The distinction between "moderate" and "severe" could be its own section, but instead relied very heavily on anecdote.
I love anecdote and memoir, but it didn't land for me here --it sometimes ended up being a laundry list, and also jumped between memoir, anecdotes of normal people, and stories of "movers and shakers", so it was kind of hard to stay oriented. I think the structure could have made the weaving of these different narratives more immersive, but instead I felt disoriented.
Mainly, it did not address my fundamental question -- how bad is it?? It kind of repeated the headline statistics I've heard (the 20% number), but it's extremely hard to understand that number because everyone I know had Covid, and nobody I know has long Covid. Even though the demographics of the vast majority of anecdotes in the book were the demo of people I know! So what's going on? I believe that very severe cases are prevalent, but this book didn't shed that much light on the full spectrum of cases. It uses the same headline 20% number, and focusing on very severe and debilitating anecdotes.
It was a good insight into anecdotes of the severe cases, so I did learn about those, and I didn't realize that this was already the case for decades with other infections. But, I wish the book was a little more balanced between the very personal and the population.
Also the writing relied on kind of cliche references.
It primarily focused on upper-middle class millennials, which there's nothing wrong with, but not something I'm that interested to read about. A lot of journalists and coders and product managers and stuff getting really anxious, with some obligatory nod to other demographics. It was also accidentally very US-focused, which, again, nothing wrong with that, but it's not as interesting or new to read about.
He was also kind of undisciplined with language -- used "severe" and "moderate" inconsistently at one point. Kind of minor, but also that's kind of the point of the book is to understand severity of this stuff. The distinction between "moderate" and "severe" could be its own section, but instead relied very heavily on anecdote.
I love anecdote and memoir, but it didn't land for me here --it sometimes ended up being a laundry list, and also jumped between memoir, anecdotes of normal people, and stories of "movers and shakers", so it was kind of hard to stay oriented. I think the structure could have made the weaving of these different narratives more immersive, but instead I felt disoriented.
Mainly, it did not address my fundamental question -- how bad is it?? It kind of repeated the headline statistics I've heard (the 20% number), but it's extremely hard to understand that number because everyone I know had Covid, and nobody I know has long Covid. Even though the demographics of the vast majority of anecdotes in the book were the demo of people I know! So what's going on? I believe that very severe cases are prevalent, but this book didn't shed that much light on the full spectrum of cases. It uses the same headline 20% number, and focusing on very severe and debilitating anecdotes.
It was a good insight into anecdotes of the severe cases, so I did learn about those, and I didn't realize that this was already the case for decades with other infections. But, I wish the book was a little more balanced between the very personal and the population.
Also the writing relied on kind of cliche references.
May 23, 2023
I loved so many things about this book. Prior shows how the experience of people living with disease is key to solving any illness and designing appropriate supports. I was particularly moved by Chapter 3 A Groundswell of Patient Activism which showed how patients with expertise in a diverse array of subjects came together to create the Patient Led Research Collaborative which has been at the cutting edge of Long Covid research. Prior shows the big picture, describing the history of infection associated chronic illnesses and their tragic neglect, then zooms in on personal experiences, showing the individual cost of these systemic medical failures. This moving back and forth between systems and individuals, medicine's history and real people's present suffering helps readers understand the weight of what's happening and what can be done about it.
My only complaint with the book is the final chapter. The book's central argument is that to solve illness, you need patient experience to inform all aspects of research and care. This is an important point. But this focus on patient-driven medicine leads to a concluding chapter that seems to put all the weight of recovery on the sick. This is especially concerning given that a common symptom discussed in the book, Post Exertional Malaise, causes patients' disease to worsen with the sort of activism the final chapter calls for. I hope future editions will conclude with a call to healthy allies to step up in the fight for better treatments and supports, and show how to elevate patient experience without harming patients further.
My only complaint with the book is the final chapter. The book's central argument is that to solve illness, you need patient experience to inform all aspects of research and care. This is an important point. But this focus on patient-driven medicine leads to a concluding chapter that seems to put all the weight of recovery on the sick. This is especially concerning given that a common symptom discussed in the book, Post Exertional Malaise, causes patients' disease to worsen with the sort of activism the final chapter calls for. I hope future editions will conclude with a call to healthy allies to step up in the fight for better treatments and supports, and show how to elevate patient experience without harming patients further.
January 6, 2023
More about COVID long haul than ME/CFS, but Prior addresses how research and a new impetus for funding long COVID (affecting an estimated 8-10 million Americans) will shed light and potential therapies for those with ME/CFS, latent Lyme, MS, lupus, fibromyalgia and other neuroimmune and autoimmune illnesses. A mostly journalistic approach with interviews of HCP, researchers, advocates, platform influencers, and select patients with a solid and compelling voice to change the system in the US. Prior weaves in a little of his own story: as a 16 yo debilitated by ME after apparent Lyme, with subsequent recovery using alternative therapies and infusions (he doesn't disclose what he used). He contracted COVID Dec 2020, which lasted 2 months, but he doesn’t say much about any long-haul symptoms or if covid reactivated his ME/CFS. Tacked on at the end are the importance of hope, resilience, and a support network. A strong push for patient advocacy throughout.
June 22, 2023
Ryan's accounting of the patients navigating long covid is eye opening to the challenges faced by this population and society, not only for this disease, but also across a variety of autoimmune diseases. The reader is left learning a great deal about the medical community working to support these patients and the immense challenges that our traditional structures pose to finding support. This is a book worth reading to gaining a better understanding of one of the immense challenges facing our world and one which we cannot afford to ignore.
May 1, 2023
Ryan Prior does a phenomenal job telling the story of the chronic sufferers being left behind by a society hurrying to shake off the pain of the pandemic. COVID is not over. Long COVID is shedding light on hidden illnesses that also follow a post-infection trajectory. However that light might just get turned off if we don’t take urgent action, leaving millions more disabled and without medical intervention.
November 17, 2022
I received a copy of this book in exchange for an honest review.
Written by CNN journalist Ryan Prior who has a personal knowledge of life-changing illness, this book explores the effects of COVID-19 on what we are calling Long Haulers, thousands of people around the world and how many are researching and looking for help for themselves. Eye opening and well written, worth the read.
Written by CNN journalist Ryan Prior who has a personal knowledge of life-changing illness, this book explores the effects of COVID-19 on what we are calling Long Haulers, thousands of people around the world and how many are researching and looking for help for themselves. Eye opening and well written, worth the read.
February 17, 2024
Good history and reporting on the history of ME/CFS and other post-viral conditions. Excellent first-hand accounts. For those of us living with LC, nothing is groundbreaking, but it is validating. Disliked the unhelpful, derisive political narratives.
August 24, 2022
Excellent book!
December 29, 2022
Ryan Prior's book sits at a pivotal turning point for how we approach heathcare going forward.
Read
February 14, 2023I couldn’t finish this. Too soon
August 17, 2024
Shares important information about long COVID, includes the connection to Myalgic Encephalomyelitis (ME/CFS) and focuses on patient experience with medical system that isn’t helping them.
August 26, 2025
Phenomenally researched book by a phenomenal person and author! Excellent detail interwoven with an emotionally captivating personal story.
July 24, 2024
I am so grateful to the author, who himself has Long COVID, for writing this book. I learned so much about the early days of this disease. There are so many advocates highlighted in this book I wish I could write a personal thank you note to. I especially appreciated that Ryan acknowledged so many different experiences and made so many people feel heard, including those who never had a positive test and therefore never got a diagnosis.
The only thing I wish he had devoted a bit more time to is the element of, "now what?" especially for individuals. I don't remember any discussion of the types of things that can alleviate symptoms or potentially even lead to recovery. I know that's a tricky topic and that what works for one person isn't going to work for everyone. The book still manages to end on somewhat of a positive tone, but I was really hoping for at least a couple personal stories that also ended on an optimistic note.
The only thing I wish he had devoted a bit more time to is the element of, "now what?" especially for individuals. I don't remember any discussion of the types of things that can alleviate symptoms or potentially even lead to recovery. I know that's a tricky topic and that what works for one person isn't going to work for everyone. The book still manages to end on somewhat of a positive tone, but I was really hoping for at least a couple personal stories that also ended on an optimistic note.
Displaying 1 - 19 of 19 reviews