One morning in March, 2020, Diana Berrent, a photographer and a mother of two from Long Island, woke up with a fever. She had chills, diarrhea, and a heaviness in her chest, and grew concerned. Her daughter was hosting a sleepover; Berrent made her way to the basement and asked the other girls to leave. Then she went into isolation for eighteen days.
Berrent had followed the news of the coronavirus from Wuhan to Lombardy and Tehran. But, she told me recently, “in suburbia, no one expects to be the first person on their block to get the plague.” She tried to get tested, but testing was limited mostly to people who’d been hospitalized. She eventually received a COVID-19 diagnosis, after an acquaintance connected her to a local congressman who arranged a test. On Facebook, she conducted her own contact tracing. A few days before falling ill, she had photographed an event in a crowded elementary-school gymnasium, and she was convinced that she was Patient Zero. At the time, there were scattered reports of coronavirus cases, but few people admitted to being infected, and her social-media updates went viral. The New York Post gave Berrent a daily column in which to chronicle her illness. She started a video blog detailing her symptoms, isolation, and recovery. In one HGTV-inspired episode, she instructed viewers on “how to set up your perfect isolation room.”
During her quarantine, Berrent learned about convalescent plasma, a blood-transfusion therapy that researchers were testing for COVID patients. She wanted to help. “We were being told as a global community, The best thing you can do is literally to do nothing,” Berrent said. “People were just sewing masks and clapping their hands every night. I thought, I have these antibodies, I might actually be able to save lives.” She signed up for every study she could find; she enrolled as Participant 0001 in Columbia University’s convalescent-plasma trial. Then she said to herself, “If I have this kind of power as an individual—to contribute to science, to save lives—what could we do by mobilizing an army of survivors?”
Berrent started a Facebook group called Survivor Corps, as a sort of “Tinder for plasma,” she said. Within a week, the group had more than ten thousand followers. On its page, Berrent wrote that people infected by the coronavirus were “waiting to be SUPERHEROES.” Later, when monoclonal antibodies were shown to be effective at fighting COVID-19, she began working with the pharmaceutical company Regeneron and the health-care firm Optum to help people arrange home delivery of the treatment.
Survivor Corps now has more than a hundred and seventy-five thousand members—it is the largest grassroots COVID movement in the world. These days, Berrent meets regularly with government officials, leading scientists, patient-advocacy groups, and COVID survivors and their families. Not long ago, she gave presentations to the Centers for Disease Control and Prevention, the National Institutes of Health, and a White House coronavirus task force within the same week. She appears on podcasts and panels, and sits on a number of COVID committees at universities and within government, sometimes as the only patient advocate. “I’m now being asked to peer-review medical papers, and I haven’t taken biology since tenth grade,” she said.
Survivor Corps has no physical headquarters. It is, in essence, a huge Facebook group with an associated Web site. People share stories of lost parents and children; they ask for prayers and support; they vent about an unfeeling health-care system. They describe debilitating symptoms that they attribute to long COVID: problems with their livers, legs, lungs, stomachs, skin, teeth, memories, and moods. They speculate about biological theories and swap medical advice, some of it valid, but some unsupported or proved ineffective. (The group, which is lightly moderated, has rules against “unsubstantiated” medical advice and conspiracy theories.) Occasionally, someone voices skepticism about what people are posting. “I am astonished at what a very close friend just said to me,” one member posted. The friend had accused her of reading “what a bunch of people write” but having “no idea if they’re telling the truth. They just tell you what you want to hear so you can blame all your issues on being sick 9 months ago.”
Advocating for such a vast constituency has pulled Berrent into choppy scientific waters. Historically, patient advocates have often found themselves opposing the researchers with whom they are trying to partner; AIDS activists frequently clashed with scientists, demanding faster research and more treatments, and in May, 1990, hundreds of ACT UP members protested outside the National Institute of Allergy and Infectious Diseases, which Anthony Fauci had been leading for half a decade. More recently, advocates have worked on behalf of people who say they suffer from chronic-fatigue syndrome, fibromyalgia, chronic Lyme disease, and other conditions that some researchers consider ill-defined.
There is little doubt among researchers that long COVID exists. But the syndrome is new, and lives for the moment in the realm of theory and anecdote. Amid an always online pandemic, the condition is also the subject of constant conjecture. Doctors, scientists, and patients are sharing their opinions freely, along with everyone else. Berrent, too, is trying to make sense of it all.
The needed research is under way. Medical schools around the country have begun studying long COVID, and hundreds of papers trying to demystify the syndrome have been published. Congress has authorized more than a billion dollars for research on the long-term consequences of coronavirus infection; Francis Collins, the director of the National Institutes of Health, has announced a long-COVID initiative that will include a large-scale, four-hundred-and-seventy-million-dollar study of the syndrome, designed in part using input from patients and families. “We know some people have had their lives completely upended by the major long-term effects of COVID-19,” Collins said recently.
Still, Berrent argues that research is going too slowly, and that long COVID is being too narrowly defined. Collins has been elected to the National Academy of Sciences and has been awarded the Presidential Medal of Freedom; nevertheless, on Twitter, Berrent recently took issue with his description of a study on the microscopic processes that may cause persistent breathing problems in long-COVID patients. “This shows a very shallow understanding of #LongCovid,” she wrote. Berrent went on to list conditions—including “Covid onset diabetes” and “seizure disorders”—that she felt Collins was overlooking: “Maybe some of these common symptoms would look more familiar if the @NIH was doing any actual research.” Urged on by her group’s members, Berrent pumps a steady stream of alarming long-COVID stories into her social-media feeds and tweets critically about the system that the C.D.C. uses to tally breakthrough infections. “I feel like I’m trolling the C.D.C. director while also trying to work with her staff,” she told me.
Berrent confronts a problem familiar to patient advocates: there is a tension between what individual patients feel, want, and need and what doctors can offer. But, with the pandemic, the scale of the phenomenon is different. By some estimates, more than a hundred million Americans have been infected by the coronavirus. Many feel abandoned by their leaders, marginalized by their fellow-citizens, and impatient with researchers. Yet it is only through careful study design, methodical data analysis, and the skeptical interpretation of results that we can separate unfounded speculation from scientific fact. Berrent and her constituency want urgent action; science demands caution. Many people, their health transformed by COVID-19, are living in the gap. To whom should they turn?
In July, I met Berrent for coffee on the Upper West Side of Manhattan. She had recently moved to Washington, D.C., and was in town visiting her mother. I’d rushed over from a hospital across town where, as an internist, I’d been caring for patients, many with COVID.
Outside a small bakery, we agreed to remove our masks. Berrent, who has bright blue eyes and a quick smile, talked rapidly between bites of hummus and gazpacho, occasionally pausing to show me an e-mail from a scientist with whom she’d started collaborating or a Facebook post from a Survivor Corps member. She spoke passionately about the struggles of long-haulers, the grief of families, and the vitriol of anti-vaxxers and anti-maskers.
Berrent grew up about ten blocks from where we were sitting, and attended Trinity, the illustrious Manhattan private school. During college, at Kenyon, she interned in Senator Daniel Patrick Moynihan’s office, and seemed headed for a career in politics. She joined Bill Clinton’s reëlection campaign and later worked at the State Department, as an aide to Madeleine Albright. She and her husband met as staffers on Al Gore’s 2000 Presidential campaign. Both went on to law school at Cornell; she worked at a law firm but stepped away after her children were born. In 2007, she started a photography business.
Berrent’s political experience served her well when she launched Survivor Corps. She sought out experts in every field and quickly found allies, including Michael Joyner, a prominent anesthesiologist at the Mayo Clinic; Kavita Patel, who was a health-policy wonk in the Obama Administration and is now at the Brookings Institution; and David Shulkin, the former Secretary of Veterans Affairs. But it’s as an outsider that she feels she has the most to offer. “Not having a background in any of this has been a phenomenal advantage,” Berrent told me. “I’m able to see this with fresh eyes and see when things just don’t make sense.” In her presentation to the N.I.H., Berrent said, “The thing that I am most proud of is that we have really redefined what it means to be citizen scientists. We need to listen to patients’ voices in guiding where science goes.”
As the pandemic continued, it became clear that many Survivor Corps members were struggling with symptoms not for days or weeks but for months, and Berrent began to focus on long COVID. She alerted doctors to the symptoms that her members were reporting—tremors, internal vibrations, insomnia, shooting pains. In many cases, she said, she found the doctors’ responses “disgraceful.” The only thing they seemed to have to say, she told me, was “You know, it is really puzzling, isn’t it?”
Berrent is a compelling storyteller—she speaks in short, powerful sentences, pausing at all the right moments. In her N.I.H. presentation, held over Zoom, she stared into the camera and declared that the medical establishment was failing people with long COVID: “What’s happening on the ground is that people are having severe, severe organ damage. They are having neurological issues that are leading to suicide. We need to be looking at the symptoms and triaging the research based on the amount of human suffering they cause—not on their frequency.”
Berrent tries to be a conduit between patients and the medical establishment. Often, however, the current flows only one way: she airs members’ concerns to researchers, but is less preoccupied with scientists’ concerns about what is and isn’t supported by evidence. Berrent regularly polls Survivor Corps members, but, although such polls generate meaningful information, it’s the kind that a political party gets when it surveys its most ardent supporters—it comes from a nonrepresentative slice of the population. In a recent online seminar hosted by the Washington Post, Berrent described a Survivor Corps poll in which she asked about the symptoms that were keeping people from going back to work. Some six thousand members responded. “The No. 1 thing that kept people from going back to work was drastic personality change,” she explained. “That came as a tremendous shock.”
Berrent suggested that COVID might come to be regarded not as a respiratory disease but as a neurological one. “I fear that there is a higher viral load involved with the Delta variant and it congregates in the nose and mouth,” she said. “What happens? Just using common sense, it goes up the nose, it knocks out the olfactory system, and what’s right next to it? The vagus nerve, which controls all of our automatic functioning. . . . We know that this virus crosses the blood-brain barrier”—a critical layer of immune defense that prevents microorganisms from infecting the central nervous system—“and we are seeing evidence of direct brain damage.”
The interviewer spoke up: “Now, I thought there was pretty clear evidence that we don’t know yet whether it’s crossing the blood-brain barrier.” (In fact, many infections begin in the mouth and nose without affecting the nervous system, and, although research has suggested that the spike protein may breach the protective barrier in mice, there is no conclusive evidence that the coronavirus infects the brain in humans.)
“We know,” Berrent responded.
Elsewhere in the program, Berrent took issue with the C.D.C.’s decision not to investigate breakthrough COVID cases that didn’t require hospitalization. “There is no such thing as a mild case of COVID,” she said, as she often does. “Let me explain what they mean by ‘mild.’ They mean encephalitis. They mean COVID pneumonia. They mean end-stage organ failure.”
The interviewer paused, a quizzical look on her face. “So you’re saying that end-stage organ failure is counted as mild?” she asked.
For a moment, Berrent hesitated. “It sure is,” she said.
Berrent’s advocacy is informed in part by a group of COVID survivors that the public, and even many medical professionals, never see. She hears from people who say that they are struggling with unusual, nonrespiratory symptoms, such as erectile dysfunction and chronic diarrhea. One Survivor Corps member is a young mother with a feeding tube and eleven rotten teeth.
Through Berrent, I met Nick Güthe, who became a close adviser to Survivor Corps earlier this summer. Güthe, an independent filmmaker in his early fifties, told me his wife’s story. In its tragic ambiguity, it is typical of many stories in the long-COVID movement.
In April, 2020, Heidi Ferrer, Güthe’s wife and a former writer for “Dawson’s Creek,” felt shooting pains in her toes. Then she developed stomach pains and diarrhea. Ferrer and Güthe got rapid COVID tests at a drive-through site, and they came back negative. (Rapid tests are less reliable than P.C.R. tests.) In the weeks that followed, Ferrer experienced palpitations, muscle pains, and a fatigue so profound that she had difficulty walking up stairs.
By the fall, Ferrer was convinced that she had long COVID. She searched for doctors specializing in the condition, but couldn’t find any. She visited acupuncturists and alternative-medicine practitioners, and started taking ivermectin—the horse dewormer that has since been shown not to help with COVID-19. By the spring, she’d developed dramatic, involuntary jerking movements. She felt an internal buzzing, and told Güthe that it was like her veins had champagne bubbles fizzing in them. Unable to sleep, Ferrer started taking enormous doses of Ambien, sometimes a pill every two hours. Because she’d never tested positive for the coronavirus, her doctor hesitated to refer her to a newly opened long-COVID clinic. She consulted a neurologist, who, Güthe told me, tried “to imply it was all in her head.” Ferrer had no documented history of mental illness, but she did have a strong family history of depression: both her father and her grandmother had died by suicide. She had struggled with alcoholism, but had been sober since 2017.
On May 22nd, Güthe went to pick up their thirteen-year-old son, who was at a friend’s house. On the way back, Güthe said, “I have to talk to you about your mom. I want to believe she’s going to get better. But I have to be honest: I don’t know how this is going to turn out.”
Back home, he and his son went upstairs, where they found Ferrer in the master bedroom, hanging by a drape from the four-poster bed. Güthe told his son to go to his room. He tried to ease Ferrer down, but couldn’t. He raced downstairs for scissors, and finally cut the drape.
When they reached the hospital, Ferrer’s heart was still beating, but it was clear that she wouldn’t recover. A doctor asked Güthe how long his wife had been depressed. “She’s not depressed,” Güthe said. “This is from her body breaking down from long-haul COVID.” The doctor asked Güthe what that was. “Just Google it,” he replied.
In June, Güthe submitted an obituary to Deadline, which went viral. “Heidi always said, ‘If something happens, let the world know what long-haul COVID has done to me,’ ” he said. Through Twitter, Güthe connected with Berrent, and learned that Ferrer had been a member of Survivor Corps. In recent months, he has joined Berrent at about a dozen events. He now fields Facebook messages from people around the world, who relate their struggles with long COVID and ask for help. Not infrequently, someone shares suicidal thoughts. “I walk someone off the ledge every week,” Güthe said. “I tell them, ‘Things are moving much faster than you realize. Hope is coming. Help is on the way. People are paying attention now.’ ”
Others, pointing out that Ferrer never tested positive for the virus, have questioned whether COVID is to blame for her death. Such uncertainty characterizes many cases of long COVID less extreme than Ferrer’s. Doctors rightly say that some of the symptoms attributed to long COVID can result from any number of conditions. Yet many patients—both with and without documented coronavirus infections—are convinced that their problems are enduring aftereffects of the virus.
Defining a new disease is a complex task, full of hazards. Some physicians believe that the condition’s severity and scope have been overblown. In a recent column for the health-news site STAT, Adam Gaffney, a critical-care physician, wrote that we need to “start thinking more critically—and speaking more cautiously—about long COVID,” arguing that the narrative being spun about the long-term effects of infection is “getting ahead of the evidence.” A recent op-ed in the Wall Street Journal by the psychiatrist Jeremy Devine suggested that many long-COVID symptoms may be “psychologically generated or caused by a physical illness unrelated to the prior infection.” Devine proposed that long COVID is “largely an invention of vocal patient activist groups.”
Like any campaign, the COVID-survivors movement must decide how big a tent it wants to build. I recently spoke with Emily Taylor, the director of the Long COVID Alliance—an umbrella organization composed of more than a hundred patient-advocacy groups. Taylor told me that the battle to legitimatize long COVID echoes her prior work as an advocate for people, her mother among them, who suffer from chronic-fatigue syndrome, a mysterious illness also characterized by brain fog, exertional fatigue, and sleep disturbances. “The beautiful thing is that long COVID could legitimize other post-viral syndromes that people have been saying are all in our head,” she said. Taylor has convened groups of experts to create diagnostic codes for long COVID, which would allow doctors to bill for treating it. Her team recently helped introduce the COVID-19 Long Haulers Act, federal legislation that would provide nearly a hundred million dollars for research, data infrastructure, and public education. The group plans to introduce a second bill, which would advocate for fifteen “Post-COVID Centers of Excellence”—institutes combining research and medical care—around the country. “We started long-COVID advocacy last year, and lawmakers kept saying, ‘We’re in the middle of a crisis, people are dying, that’s next year’s problem,’ ” Taylor said. “Well, now it’s next year. It’s time to act.”
As a physician wading into the world of patient advocacy, I couldn’t help but face the fact that I was part of the medical establishment—the group at which so much resentment is directed. I came away feeling that medicine would be kinder and more effective if patients had a stronger presence, not just as trial subjects or people in need of care but as authentic partners in the project of improving the human condition. Still, I winced whenever someone mentioned vitamins or ivermectin as a remedy for COVID, or touted online anecdotes over peer-reviewed studies, or assailed the good intentions of doctors and nurses. I wondered whether the COVID-survivors movement harbored the same anti-élite sentiment running through much of the country—a distrust of institutions and a disregard for expertise.
If this is the case, it is partly because of the long-standing failure of health-care institutions to meet the needs of people who are suffering. Doctors have often dismissed and minimized patients’ concerns, and others have profited from overdiagnosis. If the edifice of medicine stands on a fault line—one of distrust between doctors and patients, hospitals and communities—then COVID-19 is an earthquake. We’re all responsible for holding the structure together.
“We’ve heard so much about ‘community engagement’ and ‘patient engagement’ in the last twenty years,” Michael Joyner, the Mayo Clinic anesthesiologist, told me. “They were always aspirational buzzwords. But, in the pandemic, people like Diana stepped up.” Survivor Corps helped enroll scores of patients in Joyner’s convalescent-plasma trial; ultimately, a series of randomized studies failed to show that the therapy was beneficial. “The question for the medical community is: how do we take this level of patient engagement and keep it rolling?” Joyner believes that a lack of coördination and empathy among health-care providers has led many people to turn to unproven remedies. “What you want to prevent is people getting on these diagnostic odysseys,” he said. “When people have vexing, ambiguous symptoms, they end up seeing six different doctors. The cardiologist gives them one set of explanations, the endocrinologist another. Nothing really makes sense. Then someone says, Take zinc, or do this, or do that, and of course they’re going to try it.”
Joyner likened medical skepticism about long COVID to suspicion of conditions such as postural orthostatic tachycardia syndrome, or POTS. People with POTS have abnormally large swings in heart rate and blood pressure when they stand; many also experience lightheadedness, fatigue, and brain fog. Many doctors used to believe that POTS was related to anxiety or mood problems. But Joyner wanted to explore another possibility: that people’s hearts were compensating for an unusual pooling of blood in their legs. He invited patients into his lab and had them lie with their legs inside an airtight machine. Air was pumped out of the machine, so that negative pressure was applied to the legs, allowing less blood to return to the heart—mimicking the effect of standing up.
Joyner ran two “sham” experiments. First, he started the machine but deactivated the negative-pressure function. People thought that it was on, but it wasn’t. Next, he activated the negative pressure, but only after patients had slipped into special pants that blunted the machine’s effect. In both cases, people experienced no more than minor changes in their heart rates. Only when their extremities were genuinely subjected to negative pressure did their hearts really start to race. “Twenty years ago, I would have bet you dollars to doughnuts that POTS was psychosomatic,” Joyner said. “We tried like hell to show that it was. We couldn’t do it.” He now thinks that patients with POTS experience a kind of “somatic hypervigilance,” in which they become unusually sensitized to physiological changes in their bodies.
Could something similar be happening with long-COVID patients? Vinay Prasad, a physician and an expert on evidence-based medicine at the University of California, San Francisco, told me that, when it comes to long COVID, there are two sets of scientific questions. The first focusses on better characterizing the syndrome and its prevalence: What exactly are its symptoms, and how likely is an infection to cause them? The second asks whether people’s symptoms are related to the virus itself, or to something else. Treatments for COVID can themselves cause problems: simply being on a ventilator, for instance, is associated with prolonged weakness, memory loss, anxiety, depression, and difficulty returning to work. “It’s going to take you time to get back to who you were,” Prasad said. Even patients with regular pneumonia often report symptoms like cough, fatigue, and chest pain three months later.
Answering these questions requires tackling thorny methodological issues. Early in the pandemic, millions of Americans who might otherwise have received a COVID diagnosis were never tested; should they be counted as having long COVID? Meanwhile, because of severe disruptions in routine medical care, many patients’ physical and mental health may have worsened. And the number of people infected complicates matters further. Research on chronic Lyme disease—a controversial post-infectious syndrome with symptoms broadly similar to those of long COVID—takes as its starting point some four hundred thousand Lyme cases in America each year; the U.S. once recorded nearly as many new coronavirus cases in a single day. It can be true, therefore, that some long-haulers will experience very unusual symptoms—perhaps connected to the virus, perhaps not—and also that those symptoms are not ones that the average person should fear, or that researchers should concentrate on. If you cast a die a hundred times, the chance of rolling six consecutive sixes is vanishingly small. If you roll it two hundred and twenty million times—roughly the number of confirmed coronavirus cases in the world—some weird things are bound to happen.
As an amorphous post-infection syndrome, long COVID presents particular challenges. Prasad described an issue known as “ascertainment bias.” “If you had the flu two years ago versus COVID last year, the rate at which doctors are searching for problems is very different,” he said. A related concern is “recall bias”: because COVID is such a salient event in people’s lives, they may attribute any symptom they experience in subsequent months to their infection. Recently, Berrent told me that COVID was responsible for her son’s front tooth falling out, nine months after his diagnosis. I asked her how she knew it was related to COVID; she said that she’d posted a survey to the Survivor Corps page, and that many people had reported unusual dental issues. “If you keyword something into Survivor Corps and no one else has experienced it, it’s probably not COVID-related,” Berrent said. “But, when you look and there are thousands of responses, you realize you’re on to something.” Maybe, maybe not.
I asked Berrent about her contention that “there is no such thing as a mild case of COVID.” What about the millions of people who, having been infected at some point, now feel fine? I’ve treated patients who have fully recovered, I said. Surely she knows people who have, too. “Right,” she replied. “But we’ve seen that COVID can act like a ticking time bomb in the body, that can go off at any time, at any place.”
Overdiagnosing long COVID could create its own set of risks. A century ago, doctors regularly diagnosed “dropsy,” a catchall for a condition in which excess fluid caused swelling in the body. Now known as edema, such swelling is among the most common conditions I encounter as a physician. But how I treat it depends on what’s causing it. Does the swelling reflect a problem with the heart, the liver, or the kidneys? Is the issue a nutritional deficiency, or widespread cancer? Sometimes edema calls for a simple intervention, such as a protein shake; at other times, the correct treatment might be open-heart surgery. For some symptoms, a long-COVID diagnosis could obscure more than it reveals.
Prasad told me that, in his experience, it’s getting harder to ask basic questions about the origins and the severity of long COVID. Implying that there could be psychological contributors—or that lingering symptoms are not specific to the virus—often raises accusations of gaslighting. “It can feel like you’re walking on eggshells,” he said. Several recent studies have found that many people who report long-COVID symptoms don’t have antibodies against the coronavirus. (Though antibody levels can wane with time, most people with a prior infection continue to have antibodies for months.) Many long-COVID patient advocates, including Berrent, insist that the syndrome be seen mainly as a physiological disease, caused by the coronavirus. But mental illness is still illness; in their own way, they are setting rules about what kind of suffering counts.
Whatever the data show, Prasad said, we need to “acknowledge people’s suffering. When someone feels something in their body, that’s real—whether or not it’s linked to COVID. People spend a lot of mental energy asking whether something is long COVID or not. But ultimately the medical profession is about compassion. From a doctor’s point of view, if patients are suffering, we need to figure out how to help them.”
Earlier this summer, I attended a virtual patient-advocacy summit held by COVID Survivors for Change (C.S.F.C.), an organization founded by Chris Kocher, a Queens-based attorney. Some two hundred people had gathered for a crash course in patient advocacy; topics on the agenda included talking about vaccines and organizing political marches. Kocher spoke from a dimly lit room, and opened the session by lighting a candle. Behind him, on a beige wall, a corkboard was hung with badges and bracelets in support of various causes. He described one goal of COVID advocacy: “to honor the heartbreak that you all have experienced, but also build something that is inclusive and resilient and hopeful.”
Before founding C.S.F.C., Kocher, who had served as a special counsel to former Mayor Michael Bloomberg, ran the Everytown Survivor Network, the community arm of Everytown for Gun Safety, the nation’s largest gun-violence-prevention group. Last year, as his friends, acquaintances, and colleagues reeled from the pandemic, he decided to turn to COVID advocacy. He joined Facebook groups and other virtual forums for patients and families. “There were so many similarities between COVID and gun violence,” Kocher told me. “The sudden loss of a loved one, families not being able to be with them in their final moments, this complete lack of closure.”
At the summit, a woman named Kim said that speaking to people who hadn’t dealt with long COVID made her feel “more irrelevant, in my experience, because their normal seems to matter more than our losses. It’s upsetting.” A man named Ed reported that “people think that COVID is over and that it’s time for us to get over it.” C.S.F.C. is advocating for about a dozen policies, including financial support for families affected by COVID; a national strategy for bereavement and mental health; reimbursement for funeral expenses for COVID victims; and expanded eligibility for paid leave, disability insurance, loan forgiveness, and workers’ compensation for long-haulers.
In early August, C.S.F.C. transitioned from virtual training to in-person demonstration. I joined a survivors’ march in New York City, on what Kocher billed as “one of the largest nationwide days of awareness and action for COVID survivors.” C.S.F.C. had helped organize some thirty marches in twenty states. More than a dozen buildings across the country, as well as Niagara Falls, were lit up in yellow, the color of COVID survivorship. Our goal was to take six hundred and fifteen thousand steps—one for each American who’d died of the virus. Güthe and Berrent were set to speak at the event’s finale, and we agreed to meet up before and head to the march together.
I met Berrent in a hotel lobby wearing a surgical mask; she insisted that I take one of her KN95s. (She and Güthe both wore two masks: a white KN95 inside a black cloth mask emblazoned with the Survivor Corps logo.) We squeezed into a cab and rolled down the windows. I asked Berrent what she thought of Mayor Bill de Blasio’s announcement that New York City would require proof of vaccination to dine indoors, use gyms, and attend Broadway shows. “Are you kidding me? I want a federal mandate,” she said. The way to get Americans vaccinated, she told me, was “to scare them about long COVID. No twenty-five-year-old thinks they’re going to end up on a ventilator. But tell them they’re going to have erectile dysfunction, their teeth will fall out, and they’ll never go to the gym again? They’ll get vaccinated and they’ll be double-masked. You know what I mean?”
When we arrived at the eastern side of Cadman Plaza Park, near the base of the Brooklyn Bridge, the sun shone brightly. Hundreds of people, almost all dressed in yellow, had gathered. Many had posters hanging from their necks with photos of deceased loved ones and the dates on which they’d died. Still, the atmosphere was surprisingly festive—more football tailgate than memorial service. A d.j. had set up in the middle of the park, and loudspeakers blared upbeat music: the Chainsmokers, Baby Bash, Kool & the Gang. A woman wore a yellow tutu; a man donned a neon-yellow wig. Some people were dancing. Almost everyone I could see was masked.
Berrent greeted marchers like the popular mayor of a small town. “I feel like I owe you my life,” a man told her. Earlier this year, he and his wife had fallen ill with COVID, as had their three young children. His wife’s parents had both died of it. “When we got it, the doctor said, ‘Here’s three Motrin and just go home,’ ” the man said. Feeling abandoned, the couple turned to Berrent’s Facebook page. There they found community, and learned of several unproven, crowdsourced remedies: zinc, magnesium, aspirin, black tea. His wife described her frustration with the Biden Administration, which, she said, had emphasized vaccines while “not telling people how they can take care of themselves when they do get it. We watched the news all year and learned nothing. Your page changed our lives.”
A woman with a yellow flower in her hair approached. She carried a poster with a photograph of her mother, and told Berrent how overwhelmed she had been when her mother was given a COVID diagnosis in April of last year. Isolated at home, unable to see her mother in person, the woman had visited Berrent’s Facebook group. “There was more information on that page than anywhere,” she said. “I’m telling the hospital, ‘We need to do this, we need to do that.’ They were, like, ‘We don’t do that here.’ ” In the end, the woman’s mother died. “People on your page were unbelievably supportive,” she said. “Six hundred strangers on your page, praying for my mom. The power of that is insurmountable.”
The march across the bridge began. Berrent live-streamed the event from her phone, stopping for an occasional selfie. “I’m here marching for each and every one of you,” she said into the camera. Cars honked in support; bicyclists high-fived us as they whizzed by. As I walked—sweat running down my temples, Manhattan’s skyline up ahead—I asked myself what would become of this movement. During the pandemic, America has often seemed divided between two tribes—one that ignores scientists and another that listens to them. Now long COVID has created a third group: people who take every precaution and yet stand in broad opposition to the scientific establishment, distrustful of its motives, approach, and abilities. If the COVID-survivors movement doesn’t embrace a rational approach to its suffering, it will fall victim to misinformation. But, after an ideologically polarized pandemic, COVID survivorship may now be ideological, too. An ideology compresses the space for nuance until you’re left with only supporters and opponents, believers and nonbelievers. Dogma obscures data; the cause trumps the truth. When skepticism becomes taboo, progress grows more difficult.
A little after noon, we approached City Hall. On a small stage across the street, Kocher introduced a few of the speakers: an Air Force veteran whose veteran father had died of COVID; a fifteen-year-old girl who had lost her grandfather to the virus. Beside me, Berrent took a pair of black high heels from her bag. When it was her turn to speak, she stepped to the lectern and removed her masks. “We represent approximately one hundred and thirty-five million Americans who have survived COVID, but are far from having recovered,” she said. “COVID has been, and continues to be, the greatest war of our generation. As Americans, we do not leave our comrades on the battlefield. That is not who we are as a people.”
Berrent walked offstage, and another speaker took the podium. On a nearby bench, using her phone, she read me a few of the appreciative comments that Survivor Corps members had left on the group’s page in response to the live stream. Soon afterward, I said goodbye, hailed a taxi, and headed home. The cab turned east, toward a downtown hospital where I sometimes work. I thought of its examination rooms, lecture halls, and laboratories, and of the challenges ahead. The pain of COVID survivors is real and, in some cases, growing. And yet it will take years of careful research to understand it. I felt as though I had fallen into the gap along with the survivors, between science and advocacy, doctors and patients, data and demonstrations. I felt a desperation for those I’d just left and a kinship with those I drove toward: clinicians and researchers who’ve devoted their careers, however imperfectly, to helping patients. I wondered what it would take to navigate the gulf. I hoped that, looking across, we could come to see that it’s the same bridge we have to cross. ♦