Long-Haulers Are Fighting for Their Future
Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.
While watching the scientific community grapple with long COVID, I have thought a lot about a scene in The Lord of the Rings. Faced with impending doom, the hobbits Merry and Pippin ask the powerful treelike ents for help. But despite the urgency of the situation, the ents are slow. They meet for hours, and after a lot of deliberation, they announce that they’ve agreed that the hobbits are not orcs. The hobbits, who already knew that, are shocked. They were hoping for more.
In June 2020, when I started reporting on long COVID, few scientists or physicians knew that it existed—and many doubted that it did. The common wisdom was that people infected with SARS-CoV-2 mostly get mild symptoms that resolve after two weeks. And yet, thousands of “long-haulers” had already been debilitated by months of extreme fatigue, brain fog, breathing difficulties, and other relentless, rolling problems. More than a year later, several clinics care for long-haulers, while the biomedical community, like the ents, has begun to identify long-COVID patients as long-COVID patients. But some researchers still hesitate to recognize long COVID if it doesn’t present in certain ways; they’re running studies without listening to patients, and they’ve come up with their own arguably unhelpful name for the disease. Like Merry and Pippin, long-haulers are growing frustrated that what is self-evident to them—their condition is very real and in need of urgent attention from those with power—is taking a worrying amount of time to be acknowledged and acted upon.
After a year and a half, the risk of long COVID, for both unvaccinated and vaccinated people, is one of the pandemic’s biggest and least-addressed unknowns. The condition affects many young, healthy, and athletic people, and even now “none of us can predict who’s going to have persistent symptoms,” Lekshmi Santhosh, the medical director of a long-COVID clinic at UC San Francisco, told me. A small number of fully vaccinated people have become long-haulers after breakthrough infections, although no one knows how common such cases are, because they aren’t being tracked. Mysteries abound; meanwhile, millions of long-haulers are sick.
Long-haulers were the ones who described, defined, and drew attention to their condition: “Patients collectively made long Covid,” two long-haulers, the geographer Felicity Callard and the archaeologist Elisa Perego, wrote in a historical review. Now many feel that their expertise is being ignored and their hard-won knowledge is being excluded from investigations into their own illness. The message seems to be: Thanks for everything; academia can take it from here.
This attitude is slowing down long-COVID research and skewing its focus. Both long-haulers and researchers who work with them have told me about flawed studies that paint an inaccurate picture of the condition, or clinics that are recommending potentially harmful treatments. Many researchers, they argue, are missing the full picture because they’re treating long COVID as a completely new entity, and ignoring telling similarities to other complex illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
“The interest of the biomedical community is welcome—we wanted their attention!” says Athena Akrami, a neuroscientist at University College London who is part of the Patient-Led Research Collaborative, a group of long-haulers who have been studying their own community. But many academics, as they are wont to do, are contorting questions about long COVID to fit their preexisting research agendas. “In an ideal scenario with infinite resources, scientists could take an intellectual interest in some peculiarity of the condition,” Akrami told me. “But this is the real world, and limited resources need to be distributed according to the needs of patients.”
When I first spoke with Akrami, last year, she was on day 76 of her symptoms. This year, I called her on day 526. She has improved enough to take “long” half-hour walks without crashing—in the gaps between monthly relapses that completely incapacitate her for a week. Many long-haulers partially recover after a few months, or learn to manage their symptoms. But some “first-wavers” are still dealing with cycles of serious illness. Through 2020’s spring, summer, and winter surges, Donald Trump’s departure and Joe Biden’s arrival, the vaccine rollout and Delta’s ascent, they’ve been struggling to work, concentrate, or exercise. Many have been told by medical professionals that they’re just having anxiety or making up their symptoms. Even now, “it happens more often than not,” Lisa McCorkell of the Patient-Led Research Collaborative told me.
Despite long-haulers’ fight for recognition, any discussion of the pandemic still largely revolves around two extremes—good health at one end, and hospitalization or death at the other. This ignores the hinterland of disability that lies in between, where millions of people are already stuck, and where many more may end up. The coronavirus is here to stay, and even as vaccines diminish the threat of hospitalization and death, we don’t know yet how well they will protect against the disability of long COVID. The choice we make about how to study this condition will define the toll that SARS-CoV-2 takes for years to come.
Academic long-COVID research—like a lot of COVID-19 research—got off to a rocky start. Some researchers seemed to focus on the wrong problem. They filled studies with patients who were still reeling from long ICU stays, and were more easily accessible than long-haulers who had been forced to manage their own symptoms outside the medical system. Post-intensive-care syndrome is a very different problem from what most long-haulers experienced, but the two became frequently conflated. When the National Institutes of Health ran a two-day conference on long COVID in December, the long-hauler Angela Meriquez Vázquez was shocked at how few talks were relevant to her. “It just felt like, Have you talked to any of us?” says Vázquez, who is the vice president of Body Politic, a wellness organization that hosts a popular long-hauler support group.
Other studies made avoidable errors. A team from King’s College London used a symptom-tracking app to estimate that 13 percent of COVID-19 patients have symptoms that last for more than a month, while 5 percent have symptoms that last for more than two. These widely cited numbers are likely underestimates, because the study was “poorly designed,” according to Hannah Davis of the Patient-Led Research Collaborative. Despite urging from patients, the King’s College team left out many of the most common symptoms, including brain fog and short-term-memory loss. They also considered a course of long COVID to be over if someone stopped using their app with as many as four ongoing symptoms. Both flaws mean that “their prevalence numbers are artificially low,” Davis told me. By contrast, the U.K.’s Office for National Statistics estimated that 22 percent of people with COVID-19 continue to have symptoms five weeks after infection, while a team from the University of Washington found that 30 percent of patients were still experiencing symptoms after an average of six months. (The KCL team acknowledges that these issues may have led to underestimates, but notes that the study’s aim was to explore risk factors for long COVID rather than provide accurate prevalence data; symptoms such as brain fog were included in later versions of the app.)
Absent better studies, long-haulers did their own. By surveying their own community, members of the Patient-Led Research Collaborative produced what remains the most comprehensive analysis of long COVID, and one of the few to consider the arc of symptoms over time. They and other long-haulers want studies that treat long COVID holistically, rather than focusing on the single organ a researcher happens to specialize in. They want more attention to common symptoms, including neurological ones (which are among the scariest) and menstrual changes (which are among the most overlooked). And they want researchers to ask them what they already know. “Many phenomena that patients have been highlighting since the beginning are only now gaining momentum in formal research—clotting problems, cardiovascular issues, sudden drops in oxygen levels, autoantibodies,” Elisa Perego, the long-hauler and archaeologist, told me. Much of the extensive knowledge of long-haulers remains locked inside discussion threads and test-result folders because few academics sought it out.
The neglect of their expertise affects the very name of their condition. The term long COVID came from the patient community: Perego coined it on May 20, 2020. But the scientific community has rebranded the disease as “post-acute sequelae of SARS-CoV-2 infection,” or PASC—a name that some long-haulers argue is both less memorable and less accurate. PASC assumes knowledge that doesn’t yet exist—no one knows whether long-haulers are “post”-anything.
Long COVID, like every aspect of the pandemic, has also been plagued by epistemic trespassing: people overconfidently making claims about fields in which they have no pertinent expertise. Newspapers are printing op-eds about the condition by doctors with little knowledge of it. Long-haulers have told me that reporters and researchers are prioritizing academics over patients as knowledgeable sources, even when the former are new to long COVID. “I think some people feel like they know what long COVID is even when they don’t,” Davis said.
Even researchers who accept that long COVID exists have argued that some long-haulers don’t actually have it. They point to the 200 or more included symptoms as a sign that the long-COVID umbrella has been opened too broadly. They note that many long-haulers have negative results from PCR tests (which indicate current infection) or antibody tests (which indicate past infection). But some of these phenomena are easy to explain—many long-haulers were infected when PCR tests simply weren’t available; some people infected by SARS-CoV-2 don’t develop antibodies—while others make sense in light of what’s already known about long COVID.
Akiko Iwasaki, an immunologist at Yale who has carefully listened to and worked with long-haulers, told me that she has two hypotheses about why they are sick. The first is that the virus might persist in some bodily reservoir, either as a replicating entity or as ghostly fragments that haunt a patient’s cells and trigger immune overreactions. The second is that long COVID is an autoimmune disease in which the patient’s immune system mistakenly attacks their own body. (That might be because it’s trying to target viral molecules that mimic human ones, or because its ability to restrain itself has been disrupted by the virus.)
Both ideas, and others, might be right. But even on its own, the autoimmune hypothesis, for which Iwasaki and others have evidence, would account for several of long COVID’s supposedly perplexing features. Long-haulers might produce self-directed antibodies that attack different body parts, such as connective tissues or the nervous system, which would explain why their symptoms are both numerous and diverse. In some people, a small amount of virus might be enough to trigger an autoimmune response, which might be why some fully vaccinated individuals still developed long COVID. If that’s true, it could also explain why a number of long-haulers have tested negative for antibodies. “If breakthrough infections with presumably limited viral spread can cause long COVID by eliciting autoimmune responses, then people who had limited infections—and therefore, a limited antibody response—could similarly develop long COVID,” Iwasaki said.
These ideas still need to be confirmed. But at minimum, they suggest that unusual patterns of negative tests or varied symptoms are clues to be explained, not absurdities to be explained away. And yet, when data apparently clash with patient experiences, many researchers reflexively accept the former—a stance that dismisses long-haulers and twists the scientific literature. When David Putrino, a neuroscientist and rehabilitation specialist at Mount Sinai, tried to publish a paper describing the long-haulers he treated at his clinic, one reviewer refused to accept any data about patients with negative test results, even though their symptoms were identical to those with positive tests. After eight months of argument, “we just withdrew the paper,” Putrino told me.
Some institutes are doing the right thing. The NIH has received nearly $1.2 billion from Congress for a four-year long-COVID research project called RECOVER. So far, the agency has awarded $22.6 million to two institutes—the NYU Grossman School of Medicine and Massachusetts General Hospital—to lay the groundwork for recruiting large cohorts of long-haulers, who could later participate in clinical trials. The NIH consulted with several long-hauler groups throughout the process, and will require future RECOVER studies to do the same. Long-haulers have already been influential: RECOVER won’t look only at hospitalized patients, and won’t require a positive PCR test for participation.
Long-haulers have also been invited to testify in front of Congress, and to advise the CDC and the World Health Organization. These opportunities are welcome, but long-haulers want to use their precious energy efficiently. People who are sick and struggling to pay rent are being asked to provide unpaid consultations to government agencies, on tight turnarounds and across long meetings. “Our ability to do that is waning,” Alison Sbrana, an administrator for the Body Politic support group, told me. “I have to recover for two days after a meeting with the CDC.” Patients have to tag one another in as they crash from flare-ups, she added. It feels like the doors of power have been unlocked but left shut, and pushing them open takes energy that patients don’t have. (An NIH spokesperson told me that “there are plans in place” to compensate patients who take part in RECOVER focus groups and research studies.)
Rather than just course-correcting policies and projects that are already under way, long-haulers want a say in what sets sail. The remaining billion-plus bolus that the NIH has to spend? “What we really need are well-informed patient researchers sitting with NIH officers reviewing grants,” Putrino told me. Many patients also want to be actively involved with research, rather than just being passive recipients of results. “We’re often not viewed as a whole person,” said Lisa McCorkell of the Patient-Led Research Collaborative, who has a background in public-policy analysis. “But patients aren’t patients first. We have these entire lives.”
These desires aren’t unique to long-haulers. Research into autism has been dominated by medically oriented studies that look for autism-associated genes, model the condition’s traits in lab mice, or search for causes and cures. Autistic people, by contrast, tend to prioritize social research that would improve their daily lives, mental health, or ability to work. The parallels to long COVID aren’t exact—long-haulers are strongly invested in research on causes and cures—but the underlying principle is the same: Research for researchers’ sake often “erases the voices of those whose condition is the subject of the research,” Emily Willingham, a journalist and scientist, told me. Since the 1990s, autistic people have pushed for science that addresses their needs, for chances to be researchers themselves, and for recognition as experts on their own life. Long-haulers are doing the same. And that has turned some of them into advocates for conditions that are eerily similar to their own, and that have similarly fallen through medicine’s cracks.
One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me.
For example, many long-haulers have the hallmark symptom of ME/CFS—post-exertional malaise, in which mild bursts of activity trigger dramatic crashes. Clusters of ME/CFS have followed many disease outbreaks, including the original SARS epidemic, in 2003. And when the pandemic began in 2020, ME/CFS researchers and patients saw long COVID coming before anyone else did. “For years, we’ve been shouting from the rooftops that this is something that happens after an infectious onset, but it’s been hard to get people to pay attention,” Michael VanElzakker of Harvard, who is one of the few scientists to study the condition, told me. Much like long COVID, ME/CFS has been trivialized as a psychological condition, its patients mocked and its researchers underfunded. “It’s a terrible outrage,” Maureen Hanson, a molecular biologist at Cornell who also works on ME/CFS, told me. “If we had a better understanding of it, we’d be ahead of the game” with long COVID.
Good long-COVID researchers should “know how to speak ME/CFS [and] know how to speak dysautonomia,” David Putrino told me. For example, a team at Yale New Haven Hospital recently showed that even though long-haulers’ lungs and heart can correctly get oxygen into their bloodstream, their muscles and other organs struggle to extract and use the gas. This might help explain why many long-haulers experience post-exertional malaise and shortness of breath, and also why many show normal results on standard heart and lung tests. And the team only figured this out because their colleagues had found a similar effect in ME/CFS patients, and “we shared an office and talked to them,” Denyse Lutchmansingh of Yale told me. The NIH also consulted with ME/CFS researchers and patients as it developed the RECOVER initiative: “It is our hope that people who have [long COVID] may benefit from research on ME/CFS” and vice versa, a spokesperson told me.
Others aren’t connecting the dots, or doing the reading. “When talking to a lot of researchers, we don’t get the impression that they have knowledge of this field,” McCorkell told me. ME/CFS researchers, with little funding, have found evidence of both persistent infections and self-directed antibodies—two of the leading hypotheses for long COVID. They’ve studied diagnostic biomarkers, the role of reactivated viruses, and problems of the spine and connective tissues—topics that long-COVID researchers are now stumbling upon. “We’re regenerating an evidence base that already exists,” Body Politic’s Angela Meriquez Vázquez told me.
Without knowing that base, some doctors are treating long-haulers in unhelpful and frustrating ways. A few months ago, Athena Akrami’s husband, who is also a long-hauler, developed vertigo, dizziness, and other signs of POTS—a disorder of the autonomic nervous system that is common in long-haulers. POTS can be diagnosed by monitoring a patient’s heart rate and blood pressure as they stand up, but because most doctors don’t know to do that, Akrami’s husband received a series of incorrect diagnoses—including earwax buildup. He was diagnosed correctly only after he saw a cardiologist who specializes in POTS. Akrami wants agencies like the CDC and the WHO to develop guidelines that tell doctors how to recognize and test for POTS, ME/CFS, and other conditions that many long-haulers develop.
Ignoring these conditions can be disastrous. Many physicians are putting long-haulers on exercise regimes. But if patients have post-exertional malaise, exercise can lead to extreme physiological crashes—a truth that the ME/CFS community learned the hard way. “Obviously, you don’t want people to retire to bed and never get out,” Hanson told me, “but if ME/CFS patients repeatedly go past a certain level of exertion, they usually get permanently worse.” For years, such patients were told to exercise (or get psychological therapy), in large part because of a now-discredited study called the PACE trial. The damaging influence of that trial has taken years to undo—the CDC has removed recommendations for exercise therapy for ME/CFS, and other countries are updating their guidance—but several long-COVID clinics, seemingly unaware of this ongoing controversy, are now repeating the same mistake. “We’re continuing to see patients being told to exercise their way out of it,” McCorkell told me.
A condition as complex and wide-ranging as long COVID is unlikely to be cured by any one medication. But some clinics are successfully helping long-haulers manage their most debilitating symptoms. “Almost every single person I’ve seen is getting better, including the most severe situations where it seemed hopeless,” Lekshmi Santhosh of UCSF told me. The mere promise of help is itself helpful, as is the simple acknowledgment that their symptoms are real. “They want someone to try for them,” Denyse Lutchmansingh said.
But there aren’t enough long-COVID clinics. Many have lengthy wait lists, or accept only patients with positive tests, or are connected to large universities and too distant from long-haulers in rural areas. And medical help of any kind is hard to secure when people can’t work. In the Patient-Led Research Collaborative’s first survey, conducted last fall, 45 percent of long-haulers were working reduced hours and 22 percent couldn’t work at all. “People are losing their jobs because their employers aren’t letting them take reset breaks, or requiring in-person work,” Vázquez told me. “If you have a fatiguing chronic illness, the commute alone is going to zap your day.”
“A lot of us can’t afford our medications or groceries, and quite a few of us are going homeless,” Amanda Finley, the founder of the COVID-19 Long-Haulers discussion group on Facebook, told me. She lost her home last July and is now living with a fellow long-hauler. She and others have resorted to mutual aid, sending groceries or small sums of money to whoever needs it most. It is hard for her to see $1.2 billion go to biomedical research that might not pay off for years while so many long-haulers need social support yesterday.
Some long-COVID clinics have social workers embedded within them. In October, long COVID will get its own code in the International Classification of Diseases—a global diagnostic system run by the WHO. In July, the Biden administration announced that American long-COVID patients are entitled to disability rights under the Americans With Disabilities Act. But despite these welcome changes, long COVID will still have a huge effect on the workforce. “I don’t think anyone truly understands the magnitude of this,” Lutchmansingh said. “The majority of my patients are between 40 and 60 years of age. They’re in the prime of their work lives, and they’re debilitated.” And with every COVID-19 surge, their numbers grow.
The Delta variant is so transmissible that it will be impossible to fully eradicate. Instead, the pandemic will end when the virus goes endemic—that is, when most everyone has some immunity, preferably through vaccination or, alternatively, through infection. The virus will still circulate, but the shield of immunity will blunt its sting for both individuals and societies. Although breakthrough cases will undoubtedly occur, they should be milder. But just ask a long-hauler what a “mild” infection can do.
To be clear, even in the Delta era, vaccination reduces the risk of infection, which should consequently reduce the risk of long COVID. “If no one was vaccinated, there’d be much more long COVID,” Akiko Iwasaki, the immunologist, told me. But no one knows the odds of developing long COVID after a breakthrough infection. The only formal data come from an Israeli study that tested about 1,500 fully vaccinated health-care workers and found 39 breakthrough cases, of whom seven still had symptoms after six weeks. In the U.S., support groups have begun seeing small numbers of long-haulers who were fully vaccinated, as have a few long-COVID clinics. In those still-rare cases, the condition is playing out much as it did in the pre-vaccine era. “I’ve only seen three or four, but they look like long COVID,” Putrino told me. “We need to understand what the rate is.”
Some scientists have argued that the rate theoretically should be low: Mild infections in vaccinated and unvaccinated people aren’t equivalent because in the former, the immune system should be stamping on the virus. But that might not make a difference if, for example, long COVID is an autoimmune disease. With so much uncertainty around the condition’s nature and roots, confident predictions are unwarranted.
“My hope is that what we’re seeing with long COVID is an immune system’s overreaction to a novel virus,” Putrino told me. As immune systems become familiar with that virus, through vaccinations, boosters, or natural encounters, the likelihood of developing long COVID should hopefully fall, he added. But even in that scenario, long COVID will still exist, just as ME/CFS and other related illnesses still do. Long COVID has a special name, attention, and funding because a lot of people happened to get sick with the same brand-new pathogen in a matter of months. By contrast, people who develop related chronic illnesses rarely know what the infectious trigger was (or if there even was one). What proportion of ME/CFS is long flu, or long Epstein-Barr, or long cold? No one knows, because few people have cared to look or been funded to do so.
The risk is that long COVID becomes yet another neglected disease whereby some uncounted number of people become debilitatingly sick every year and fruitlessly bang for help on the door of an unconcerned medical establishment. But a better future is also possible, in which long-haulers—vocal, united, and numerous—finally galvanize research into the long-term consequences of viral infections; in which such research proceeds quickly as patient experts become partners; in which the world gets ways of preventing and treating long COVID, ME/CFS, and other marginalized conditions; and in which the ents’ interminable meeting ends in action and victory.