The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever by Ryan Prior

Sly Saint

Sly Saint

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Book
Overview
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.
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In reading The Long Haul by Ryan Prior I learned a lot about Covid long haulers. Ryan covered the history and the remarkable patients that brought this disease to the public, government, and medical awareness. I agree with Ryan that researchers need to be very aware of the research done on other post-viral illnesses, especially ME/CFS. It’s a remarkable story and Ryan is an interesting and creative writer.

Ron Davis
Journalist Ryan Prior’s major account of Long Covid, The Long Haul, is superb. Along with meditative side bars on science and medicine, Prior offers a wide-ranging investigation into the history, science, and politics of this chronic condition—potentially the fate of one in five Covid survivors. Prior’s street cred as both a Long Covid survivor and a victim of myalgic encephalomyelitis (ME), a decades-old chronic disease to which some compare Long Covid, renders him a compassionate, insightful narrator.

Hillary Johnson
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https://www.barnesandnoble.com/w/the-long-haul-ryan-prior/1140976265
 
Moved from the Long Covid in the media thread

How patients wrote ‘the first textbook’ on long COVID

On Sept. 18, 2022, the day after President Biden pronounced the “pandemic is over” on “60 Minutes,” the #MEAction Network protested at the White House to demand Biden declare a national emergency for people with post-infection illness. In attendance was Ryan Prior. A journalist at CNN, Prior has an illness strikingly similar to long COVID, myalgic encephalomyelitis, euphemistically known in the U.S. as chronic fatigue syndrome. Now he is the author of “The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever.”

“Long hauler,” if the phrase is still unfamiliar, refers to someone who has not recovered after a COVID infection or who has long COVID — a multisystem syndrome with myriad symptoms ranging from profound exhaustion to cognitive impairment. Both “long hauler” and “long COVID” were terms coined by patients — itself a unique phenomenon; diseases are usually named by the doctors who discover them. Although long COVID is caused by a novel virus, post-infection disease is not new. Think of post-polio syndrome and AIDS.

In Prior’s framing, long COVID is a shadow pandemic of the one we have been marking only by hospitalizations and deaths. As COVID-19 spread across the world, Prior writes, devastating data emerged: “Hundreds of studies showed that multisystem illness could linger for weeks, months, or longer in an estimated 10 percent to 30 percent of those infected” — a mass disabling crisis. (Since he finished his book, a newer CDC study found that nearly one in five American adults infected with COVID-19 has developed long COVID.)

In this shadow pandemic, previously healthy and active people are becoming shells of their former selves. Alarmingly, more and more patients are also meeting the criteria for myalgic encephalomyelitis (ME), which in its severe form has been compared to “late-stage AIDS, multiple sclerosis and kidney failure.”

Prior distills nearly three years of pandemic research and interviews into a careful mosaic of patient narratives, recounting the story of long COVID alongside his own journey with ME. He also chronicles how activist-patients have led the struggle toward acknowledgment and research in the hope of finding treatment and eventually a cure. From their beds, long haulers found each other over social media, organized and began doing the impossible. Support groups created a space to be seen, to share symptoms and stories that turned into “vital information about the long-term effects of Covid-19.” They met not merely to console but to mobilize, and they collected data as “regular citizen scientists rather than the political and medical establishment.”

https://www.latimes.com/entertainme...tients-wrote-the-first-textbook-on-long-covid
 
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Moved post

Long Haul COVID: Like 'Demon Had Hijacked My Nervous System' Says Author

https://www.newsweek.com/2022/12/23...ed-my-nervous-system-says-author-1766502.html

Interview with Ryan Prior in Newsweek magazine.
Newsweek said:
In this Q&A with former CNN reporter and COVID long hauler Ryan Prior, he discusses his chronic fatigue syndrome diagnosis as a teenager, how patients can best advocate for themselves, the importance of patient-led medicine going forward and how Long COVID has catalyzed the disability movement and more. His new book, The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever (Post Hill Press), delves into these topics in even greater detail.
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Excellent book review in the Lancet. Don't know if this is a completely new book, or a reprint of the previous, but it's published in 2024.
A few mentions in the review of ME and medicine's neglect of these illnesses and the importance of working to together with patients.

The Lancet Long COVID politics and activism - Emily Mendenhall

Abstract:

Post-COVID-19 condition (also known as long COVID) has been described as a mass disabling event. Many people around the world have lost their jobs, homes, health, and social lives to a virus that sits in the nerves, tissues, blood, brain, and gut. Although rapid medical innovation for diagnostic tests, treatments, and effective vaccines for COVID-19 was largely efficient and effective, there are no verifiable tests for long COVID or a silver-bullet therapy to treat it. Even so, governments have committed millions to research projects that will hopefully explain the complex array of symptoms characteristic of long COVID and provide effective therapies and care to support recovery. Yet long COVID has also made clear the dearth of research, funding, and therapies for post-viral conditions and mobilised a movement to rectify it.



Eric Topol has shared the whole review with pictures on Twitter:

https://twitter.com/user/status/1811535550672961794
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