The Long Haul

© 2022 by Ryan Prior

All Rights Reserved

This book contains research and commentary about COVID-19, which is classified as an infectious disease by the World Health Organization. Although every effort has been made to ensure that any medical or scientific information present within this book is accurate, the research about COVID-19 is still ongoing. For the most current information about the coronavirus, please visit cdc.gov or who.int.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author and publisher.

Post Hill Press

New York • Nashville

posthillpress.com

Published in the United States of America

Table of Contents

Chapter 1          A Future in Jeopardy

Chapter 2          A Surprising Problem

Chapter 3          A Groundswell of Patient Activism

Chapter 4          Patients Become the Experts

Chapter 5          A Lifelong Mission

Chapter 6          We Predicted This

Chapter 7          Covid for Christmas

Chapter 8          Unraveling the Mystery

Chapter 9          The NIH Goes Big

Chapter 10        Gaslighting, Disbelief, and the Search for Answers

Chapter 11        Chronicles of Uncertain Recoveries

Chapter 12        Precursors: ME/CFS and Lyme

Change 13        Theory of Everything

Chapter 14        A New Epidemic of Disability

Chapter 15        The ePatient Revolution and Crowdsourcing Research

Chapter 16        Expectant Hope

Acknowledgments

Bibliography

For Mom, Dad, Pam Stanescu, and Cindy Shepler

Disease is very old, and nothing about it has changed. It is we who change, as we learn to recognize what was formerly imperceptible.

Jean-Martin Charcot, De l’expectation en médecine

Chapter 1

A Future in Jeopardy

It isn’t just life or death. Even a mild case of the virus can disable many of us for the rest of our lives. And our leaders had no idea.

That thought hung in the back of my mind on the last day of February 2020, while I was working a weekend shift filling in as a breaking news writer for CNN’s Ticker, drafting updates on global events that scrolled across the bottom of millions of viewers’ screens. From the video feed at my desk in the main newsroom of CNN’s world headquarters in Atlanta, I watched as Vice President Mike Pence stepped to the podium in the White House briefing room to give an update on that morning’s two-and-a-half-hour meeting of the White House Coronavirus Task Force. After his opening statement, Pence introduced Alex Azar, the Secretary of Health and Human Services, who sought to assure the public that the administration had the outbreak under control and that the risk to the average American from the virus was low.

It’s important to remember, Azar said, for the vast majority of individuals who contract the novel coronavirus, they will experience mild to moderate symptoms, and their treatment will be to remain at home, treating their symptoms the way they would a severe cold or the flu.

He continued: For some individuals, a smaller percentage, especially those who may be medically fragile, they will require medical attention including, possibly, hospitalization.

His stable demeanor and cool command of the room belied more stubborn truths brewing behind what we now know was an emergent global pandemic. For my own part, I dwelled on something much different from what most people were concerned with as I took in Azar’s words: I was thirty years old at the time. At first glance, I might have looked like one of the strong young people we imagined with immune cells that could easily stare down the crown-shaped virus circulating the globe. But like seven million others in the U.S., I was immunocompromised.

I knew that if I were infected with the coronavirus, it could mean much more than two weeks of illness at home. Although it might not kill me, it might threaten every ambition I held for my professional career and every dream of one day being a husband and a father.

Over the following month, I would aid in CNN’s coverage of the pandemic from various vantage points. In my role as a Cross-Platform Associate Producer, I trained across half a dozen different teams, including the Ticker, Special Projects, and a variety of roles as a digital writer in the newsroom. Flexibility right down to the moment was often the number one priority of the role. Based on the network’s needs, I could be called to contribute in any number of ways.

On March 11, 2020, due to a gap in my schedule, I had a training day shadowing a producer on the Anderson Cooper 360˚ show team. During the eight-hour shift, the producer frequently used sanitizing wipes to clean every inch of the workstation in the small edit bay where we sat. Much of the day was spent preparing for President Donald Trump’s address to the nation from the Oval Office. There was speculation that he would call a national emergency that evening to empower the nation to deal with the unprecedented threat.

We sat in silence, just after 9 p.m., as Trump explained his administration’s new policy: To keep new cases from entering our shores, we will be suspending all travel from Europe to the United States for the next thirty days. Much of the speech was tied up in an attempt to project a Reaganesque optimism, broadcasting the idea the virus was no match for the greatest nation on earth.

If we are vigilant—and we can reduce the chance of infection, which we will—we will significantly impede the transmission of the virus, Trump said. The virus will not have a chance against us. No nation is more prepared or more resilient than the United States. We have the best economy, the most advanced healthcare, and the most talented doctors, scientists, and researchers anywhere in the world. Commentators opined that the policy was wrong, that the tone was off, that we were not mobilizing fast enough.

That night as I walked out of the CNN Center, a building to which I’d reported nearly every day for five years, I didn’t realize that as the whole company shifted to working from home, it would be seventeen months before I set foot in the office again.

A week later, I began what would become a year-long assignment as a features writer for CNN primarily focused on science, health, and wellness. My first day in that role was also the whole network’s first day of remote work. As with nearly everyone on earth, just about every conversation I would have over the next year revolved around the virus. Every country and institution, large and small, would spend that year negotiating their roles and lobbying for resources. Every news site would overflow with analyses on these topics, and countless books would be written about each aspect of the response, or lack thereof. I couldn’t and can’t espouse expertise on all of minutiae of immunology and epidemiology, but there is one area where I do consider myself an expert: I have lived with a long-term illness following an infection for more than fifteen years. And since the start of the pandemic, I have told the stories of those with similar experiences due to Covid-19. While most of the nation’s attention was paid to case counts and death counts and the swirling controversies around lockdowns, school closures, and mask mandates, I felt compelled to bear witness on behalf of millions who felt voiceless after not only becoming infected with the virus, but suffering disabling symptoms for months, and sometimes years, afterwards.

On the night of his Oval Office address, Trump focused his comments toward the vast majority of Americans, explaining that the risk is very, very low. Young and healthy people can expect to recover fully and quickly if they should get the virus. I knew those words to be inadequate then. And over the ensuing months, I would continually publish stories reporting on a growing group of survivors who would come to be called Covid-19 long haulers.

It would turn out to be true that the majority of patients infected with the virus would get better quickly, but that number would fall short of being the vast majority. Public health leaders’ early comments about most people getting better, which reflected the prevailing public belief at the time, didn’t begin to capture the full picture of the disaster that would happen in the lives of many of the pandemic’s survivors.

In the weeks after lockdowns began, I received a disquieting message from Linda Tannenbaum, executive director of the Open Medicine Foundation, a non-profit organization in California dedicated to funding research for complex chronic diseases. She’d been a friend and a source for my stories for nearly a decade. The scientists her organization worked with were prestigious forward thinkers, and she was alarmed at what they could already see. She confided that she expected the novel coronavirus, which had been designated SARS-CoV-2, could cause years or even decades of disability in some sufferers. So many other long-time sources reached out with the same warning that I began to dread picking up my phone.

Covid-19 had its predecessor in the first severe acute respiratory syndrome (SARS) virus, which mainly terrorized Asia in the early years of the new millennium. For many patients, Tannenbaum explained, that virus had left years of wreckage in its wake. A 2009 study of 369 SARS survivors published in JAMA Internal Medicine showed that four years after initial infection, some 40 percent had a chronic fatigue problem, and 27 percent met the Centers for Disease Control and Prevention’s diagnostic criteria for chronic fatigue syndrome. If the second SARS virus—which causes Covid-19—were to prove as wicked in the long term as the first, it might mean years of disability for a swath of humanity. Knowing chronic illness so intimately already, I could barely let myself process or imagine the scope of the pain. Having met hundreds of post-viral patients prior to the Covid-19 pandemic, I considered the prospect of a mass disabling event very likely.

And looking at scientific literature about previous epidemics, I saw similar trends in history. Before researcher Jonas Salk pioneered a vaccine in the 1950s that led to the disease being virtually eradicated, the polio virus fueled terrifying outbreaks around the world for millennia, accounting for many deaths among children and causing irreversible paralysis in about 1 in 200 patients. But, less commonly acknowledged, the virus also caused post-polio syndrome in 25 to 40 percent of survivors, leading to muscle aches and fatigue that could last for decades. Likewise, the Ebola virus, which caused more than twenty-eight thousand cases during its 2014–2016 epidemic, left its own post-viral syndrome. During that outbreak, Ebola killed more than a third of those it infected, and more than 70 percent of survivors were left with a constellation of symptoms including headaches, joint pain, fatigue, and menstrual cessation.

In 2020, as healthcare systems around the world were overwhelmed with dying patients, thousands of very sick people dealing with the ongoing effects of Covid-19 began gathering in online support groups offering each other guidance as months passed and their expected recovery never came.

In July, the CDC released a study of 292 Covid-19 patients showing that 35 percent of them still had symptoms after two or three weeks; among younger people between ages 18 and 34, about one in five included in the study had not fully recovered. Assuming that data generalized to the wider population, it was evidence showing that Covid-19 could linger beyond its two-week recovery time and long-term symptoms were a possibility.

The next month, a science writer colleague sent me a study from the United Kingdom that burned itself into my consciousness. It appeared to show that about three-quarters of those hospitalized for Covid-19 experienced symptoms beyond the twelve-week mark. Another long hauler symptom study out of the UK, which has now tracked five million patients via a symptom tracking app, showed that one in ten people were sick for at least three weeks.

The fears that my sources and friends had expressed to me were being realized.

But hope—seemingly irrational at the time—hung at the edge of each of these conversations.

It was becoming clear that studying why some people get sick, and stay sick, could be one of the greatest scientific opportunities of our lifetime.

Disease is Very Old and Nothing About It Has Changed

A week before my seventeenth birthday, on October 22, 2006, I came home from school and slept for sixteen hours. I did this again and again, day after day. We didn’t know what was wrong, and it wasn’t getting better. After two weeks I had to quit going to school altogether. The rest of my junior year was consumed with home visits from teachers to carry me through my AP classes and doctor’s appointments through which my family and I desperately sought not just a cure for my illness, but simply a diagnosis. After visits to sixteen doctors, what felt like every possible medical test, and failed hypotheses including HIV, mononucleosis, and bipolar disorder, we were still at a loss.

The symptoms were wide and varied. Over the weeks and months, my body almost always felt heavy. I had constant headaches and muscle aches. The smallest stimulation in sound or light would overwhelm me. The most minimal stressor could throw me into a crash for hours. Lying in bed, there were often times when even lifting my head up for a few minutes sapped all of my strength. Resting in absolute stillness in a dark room, I structured my life to preserve every last sliver of energy in order to accomplish only the most important tasks, letting every other worry or plan or goal fall away. Many automatic functions of my body never seemed reliable. I would feel ravenous, but when I tried to eat the food disgusted me. My body felt like it had ceased to be able to create energy, and yet some days I couldn’t sleep at all. When I could sleep, I didn’t feel refreshed at all. Predicting day by day, or hour by hour, whether I’d be functional was impossible.

Basic thinking and comprehension were often fleeting. In one unmooring memory, I recall looking at a stop sign while driving, aware there were letters on it, but not knowing the concept they expressed.

In my small town of Warner Robins, Georgia, my friends in high school joked that when I was finally diagnosed, doctors would call the illness Ryan Prior disease. But after six months, the label was simply chronic fatigue syndrome, a diagnosis of exclusion or a so-called wastebasket diagnosis used when symptoms can’t be attributed to a known disease. I was told the term just implied the absence of any identifiable cause for a condition that had totally derailed my life.

I pushed, and sometimes hobbled, my way through the University of Georgia taking twenty pills a day, giving myself a shot weekly, and driving four hours round trip each month to receive an infusion, all of which wasn’t covered by medical insurance. As a college senior studying English and international affairs, I wrote a story for USA Today about the illness that changed my life. It garnered a flood of messages from around the world. I learned that the history of my strange disease was far more complicated than I realized, and that I was far from unique. After graduation, I raised $150,000, created a non-profit organization, and built a film production team. We set off on a journey around the country, from Harvard to Stanford to Columbia, directing a documentary film about what I would come to feel was a forgotten plague.

What we had originally thought of as Ryan Prior disease, and later as chronic fatigue syndrome, was actually myalgic encephalomyelitis, or ME/CFS, a complex neuro-immune disease affecting between 836,000 and 2.5 million Americans and between 17-24 million people worldwide. However, the Food and Drug Administration had not approved a specific drug to treat the underlying condition and still hasn’t today. And ME/CFS was receiving just $5 million annually in National Institutes of Health research funding. Despite major constraints, however, researchers had published thousands of peer-reviewed papers about ME/CFS, which they characterized as being as severe as late-stage AIDS, multiple sclerosis, and kidney failure.

The disease often appears following a moderate or severe viral or bacterial infection, likely set off by a genetic or other predisposition that scientists are still teasing out. Years after I fell ill, tests revealed that my own case might have been triggered by a Lyme disease infection, likely from a tick bite at a Boy Scout camp when I was sixteen.

I became familiar with the chore of giving countless vials of my own blood. As a writer thrust into science journalism by my own personal health crisis, I also became well-versed with interviewing top experts and steeping myself in medical literature and the political controversies around how diseases are framed, named, and funded. It was a skill and perspective I never wanted, but it became useful in telling stories the world needs to hear.

Our documentary film, medical advocacy, and my ambitions as a journalist led me to becoming a writer for CNN in my mid-twenties, frequently focusing on how patients had transformed their own lives, and those of others, by innovating new treatments when they hit a wall in the medical system.

I wrote about Stanford’s Ron Davis, who pioneered the technology that fueled the Human Genome Project, but then transformed his research career in his seventies to pursue a cure for his son, who lost the ability to talk or eat solid food due to myalgic encephalomyelitis. I profiled Doug Lindsay, a college dropout who was bedridden for eleven years with a rare autonomic condition before inventing a new surgery and curing himself. And I put together a series of features on Dr. David Fajgenbaum, a medical student with Castleman disease, which presents with characteristics akin to cancer and autoimmune disease. He nearly died five times from the severe cytokine storms it caused. At one point his family brought a priest into his hospital room to perform last rites. Yet he learned he could repurpose a drug for his disease, saved his own life, and now runs a clinical trial bringing that drug to others with Castleman.

Telling their stories was a way of also telling a version of my own: it helped me understand the depths of what had happened to me and how to channel that experience into helping as many people as possible.

With each story I wrote, I felt I was tapping into a set of principles about how regular people faced with horrific or unforgiving circumstances can transform their own lives. Even more impressive, these same people who lost faith in mainstream medical dogma miraculously had enough faith in themselves to keep fighting. They pursued their own intuition, many times despite doubt and abandonment from family, friends, and medical providers. I had a voracious craving to tell these stories in the hope that they might augur new ways of being in our own bodies and believing in our own capacity to seek insights, build teams, and guide change both within the medical system and in the wider world.

Then a global pandemic hit.

As Covid-19 spread around the world, my inbox lit up with e-mails from sources I’ve interviewed and collaborated with over the last six or seven years. Each source had a message that scared me, that stole my sleep, and that told me I may need to conjure up all my talent to embrace a new mission in my life. Covid-19 would be a global viral pandemic, but it would likely spark its own second chronic disease pandemic for post-viral sufferers whose lives could be upended for decades. And we would need knowledgeable storytellers to delve into the scientific nuance with grace and empathy, so that Covid-19 long haulers didn’t face the same decades of controversy that had mired progress in diseases like my own.

Most importantly, if patients, scientists, policymakers, and journalists each rose to the challenge, we might finally solve the most intractable immune-related diseases that have gnawed at the edges of our health system. This is a vital chance to be bold. We are now in the midst of a polio-like epidemic of long-term disability. Within the first two years of the pandemic, scientists projected there were up to 100 million long haulers worldwide. Many of them experience cognitive illness that resembles brain injury, which leaves the possibility of a later epidemic of neurodegenerative diseases such as dementia and Parkinson’s years down the road.

Working together, it’s possible to define, treat, and defeat Long Covid. And in the process, we might be able to end the years of misunderstanding endured by those with diseases such as chronic Lyme, ME/CFS, Gulf War syndrome, fibromyalgia, multiple chemical sensitivities, or postural orthostatic tachycardia syndrome. As with Long Covid, the underlying pathology of each of these diseases is hard to detect, the scientific base isn’t well developed, and patients are often told their symptoms are all in their head. Covid-19 is a once-in-a-century pandemic, but it’s also a once-in-a-century opportunity to leverage public awareness and political capital into finally building a true understanding of post-viral and autoimmune illness.

This book is the true story of people fighting a disease.

Their lives resonate achingly closely with my own. Covid-19 long haulers are like canaries in a coal mine, people whose experiences we can peel back to reveal important insights about our immune systems, our medical system, and our common humanity.

Illness and disease are universal in the human experience. It’s not a question of if, but rather when, frailty might strike us. And often it’s at a younger age than we would have envisioned. More than 150 million Americans, or about 40 percent of us, have a chronic disease. I’ve claimed my own form of citizenship in that tribe for more than a decade. Millions of Americans will join this group as a result of their Covid complications. One of the most important questions long haulers can ask the world is whether Covid-19 complications are random or whether they strike particularly acutely in patients with particular environmental, genetic, or epigenetic profiles.

In many people, the illness is already irrevocably altering their lives by dimming their ambitions, decimating their finances, and shattering their relationships. It exerts a weight across families and communities, with caregivers often bearing the brunt, physically or psychically, in ways that can almost come to rival the pain of the actual sufferer.

Illness dramatically redirected my own life too. I still suffer relapses, on a roughly annual basis that can leave me bedbound for weeks.

I rely on the help of a rare specialist and a robust treatment plan that requires swallowing dozens of pills per day. But after a couple years in college, I had recovered to the point of being in a form of remission more often than not. In the intervening decade, I found that disease exists in the space between the person we are and the person we’d like to be. Part of reclaiming selfhood meant picking items off my bucket list, dreams I’d held long before I became sick, and which straddled the schism in my psyche between pre- and post-illness selves. As an adult I spent hours thinking of the person I had wanted to be when I was in junior high, and many of those visions were simply experiences to be had. In frequent periods when my health felt unstable, the idea of travel often felt too risky: a bit of jet lag or a chaotic sleeping arrangement overseas could carry with it the specter of relapse, threatening my ability to make it through school or hold down a job. But as the illness subsided into near remission, the existential fear of jagged downturns held less sway over my future decisions. There was little standing in my way path toward seeking adventure.

So, as I settled into my career, I eventually gained the confidence to set off on a road trip with a friend down the Pacific Coast Highway, ticking off one of those long-held dreams. I kept going. I’ll never forget the moment when I first saw the Eiffel Tower sparkling at night. Also emblazoned in memory is the moment when I was in Rome chatting with a taxi driver, and I fell quiet as I shifted to the other side of the car to take in the Colosseum, which was even more awe-inspiring than I had imagined. Those were moments of wonder. They were also moments of healing, of uniting past and present versions of myself.

Whatever our dreams, they are the fuel that can power us through sustained illness, and they are far more important than the incremental ups and downs of lab tests and medication changes. It may be impossible to truly get back to who we were before getting sick. Repairing that breach, for me, meant relentlessly pursuing the right specialist, holding healthcare providers accountable, garnering support from family and friends, and doggedly adhering to a medical regimen. It also requires a total reassessment of one’s expectations for life, combined with a daring faith to hold true to the goals that are still possible.

First, do no harm is perhaps the most widely known principle in medical ethics. But there’s another concept that I believe is nearly as sacred, which risks being lost in a world of over-reliance on diagnostic testing—particularly those tests that are unreliable for Long Covid and similar complex diseases in which science is contested or emerging—and our often too bureaucratic healthcare system. It comes from the nineteenth-century scholar Sir William Osler, beloved by medical students as a dean of medical education. Believe patients, he preached to new trainee doctors. Listen to your patient. He is telling you the diagnosis. By entering into the world of long haulers, we’re challenged to absorb the full gravity of their suffering and to use that wisdom to not only to reframe our view of the pandemic or of healthcare, but also to spark change in all of us. The virus, in its many variants, has inextricably shifted our collective future. The world we rebuild must empower the potentially continuous pipeline of wounded survivors to retain their dignity.

The goal of medicine is to cure disease, yes, but even more than that, it is to embrace the sick and to give them back the sacred gift of being able to dream.

This is a story about getting the medical system to work for you in the face of a disease that