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In the early spring of 2020, the condition we now call long COVID didn’t have a name, much less a large community of patient advocates. For the most part, clinicians dismissed its symptoms, and researchers focused on SARS-CoV-2 infections’ short-term effects. Now, as the pandemic approaches the end of its third winter in the Northern Hemisphere, the chronic toll of the coronavirus is much more familiar. Long COVID has been acknowledged by prominent experts, national leaders, and the World Health Organization; the National Institutes of Health has set up a billion-dollar research program to understand how and in whom its symptoms unfurl. Hundreds of long-COVID clinics now freckle the American landscape, offering services in nearly every state; and recent data hint that well-vetted drugs to treat or prevent long COVID may someday be widespread. Long COVID and the people battling it are commanding more respect, says Hannah Davis, a co-founder of the Patient-Led Research Collaborative, who has had long COVID for nearly three years: Finally, many people “seem willing to understand.”
But for all the ground that’s been gained, the road ahead is arduous. Long COVID still lacks a universal clinical definition and a standard diagnosis protocol; there’s no consensus on its prevalence, or even what symptoms fall under its purview. Although experts now agree that long COVID does not refer to a single illness, but rather is an umbrella term, like cancer, they disagree on the number of subtypes that fall within it and how, exactly, each might manifest. Some risk factors—among them, a COVID hospitalization, female sex, and certain preexisting medical conditions—have been identified, but researchers are still trying to identify others amid fluctuating population immunity and the endless slog of viral variants. And for people who have long COVID now, or might develop it soon, the interventions are still scant. To this day, “when someone asks me, ‘How can I not get long COVID?’ I can still only say, ‘Don’t get COVID,’” says David Putrino, a neuroscientist and physical therapist who leads a long-COVID rehabilitation clinic at Mount Sinai’s Icahn School of Medicine.
As the world turns its gaze away from the coronavirus pandemic, with country after country declaring the virus “endemic” and allowing crisis-caliber interventions to lapse, long-COVID researchers, patients, and activists worry that even past progress could be undone. The momentum of the past three years now feels bittersweet, they told me, in that it represents what the community might lose. Experts can’t yet say whether the number of long-haulers will continue to increase, or offer a definitive prognosis for those who have been battling the condition for months or years. All that’s clear right now is that, despite America’s current stance on the coronavirus, long COVID is far from being beaten.
Despite an influx of resources into long-COVID research in recent months, data on the condition’s current reach remain a mess—and scientists still can’t fully quantify its risks.
Recent evidence from two long-term surveys have hinted that the pool of long-haulers might be shrinking, even as new infection rates remain sky-high: Earlier this month, the United Kingdom’s Office for National Statistics released data showing that 2 million people self-reported lingering symptoms at the very start of 2023, down from 2.3 million in August 2022. The U.S. CDC’s Household Pulse Survey, another study based on self-reporting, also recorded a small drop in long-COVID prevalence in the same time frame, from about 7.5 percent of all American adults to roughly 6. Against the massive number of infections that have continued to slam both countries in the pandemic’s third year and beyond, these surveys might seem to imply that long-haulers are leaving the pool faster than newcomers are arriving.
Experts cautioned, however, that there are plenty of reasons to treat these patterns carefully—and to not assume that the trends will be sustained. It’s certainly better that these data aren’t showing a sustained, dramatic uptick in long-COVID cases. But that doesn’t mean the situation is improving. Throughout the pandemic, the size of the long-COVID pool has contracted or expanded for only two reasons: a change in the rate at which people enter, or at which they exit. Both figures are likely to be in constant flux, as surges of infections come and go, masking habits change, and vaccine and antiviral uptake fluctuates. Davis pointed out that the slight downward tick in both studies captured just a half-year stretch, so the downward slope could be one small portion of an undulating wave. A few hours spent at the beach while the tide is going out wouldn’t be enough to prove that the ocean is drying up.
Recent counts of new long-COVID cases might also be undercounts, as testing slows and people encounter more challenges getting diagnosed. That said, it’s still possible that, on a case-by-case basis, the likelihood of any individual developing long COVID after a SARS-CoV-2 infection may have fallen since the pandemic’s start, says Deepti Gurdasani, a clinical epidemiologist at Queen Mary University of London and the University of New South Wales. Population immunity—especially acquired via vaccination—has, over the past three years, better steeled people’s bodies against the virus, and strong evidence supports the notion that vaccines can moderately reduce the risk of developing long COVID. Treatments and behavioral interventions that have become more commonplace may have chipped away at incidence as well. Antivirals can now help to corral the virus early in infection; ventilation, distancing, and masks—when they’re used—can trim the amount of virus that infiltrates the body. And if overall exposure to the virus can influence the likelihood of developing long COVID, that could help explain why so many debilitating cases arose at the very start of the pandemic, when interventions were few and far between, says Steven Deeks, a physician researcher at UC San Francisco.
There’s not much comfort to derive from those individual-level stats, though, when considering what’s happening on broader scales. Even if immunity makes the average infected person less likely to fall into the long-COVID pool, so many people have been catching the virus that the inbound rate still feels like a flood. “The level of infection in many countries has gone up substantially since 2021,” Gurdasani told me. The majority of long-COVID cases arise after mild infections, the sort for which our immune defenses fade most rapidly. Now that masking and physical distancing have fallen by the wayside, people may be getting exposed to higher viral doses than they were a year or two ago. In absolute terms, then, the number of people entering the long-COVID pool may not really be decreasing. Even if the pool were getting slightly smaller, its size would still be staggering, an ocean of patients with titanic needs. “Anecdotally, we still have an enormous waitlist to get into our clinic,” Putrino told me.
Deeks told me that he’s seen another possible reason for optimism: People with newer cases of long COVID might be experiencing less debilitating or faster-improving disease, based on what he’s seen. “The worst cases we’ve seen come from the first wave in 2020,” he said. But Putrino isn’t so sure. “If you put an Omicron long-COVID patient in front of me, versus one from the first wave, I wouldn’t be able to tell you who was who,” he said. The two cases would also be difficult to compare, because they’re separated by so much time. Long COVID’s symptoms can wax, wane, and qualitatively change; a couple of years into the future, some long-haulers who’ve just developed the condition may be in a spot that’s similar to where many veterans with the condition are now.
Experts’ understanding of how often people depart the long-COVID pool is also meager. Some long-haulers have undoubtedly seen improvement—but without clear lines distinguishing short COVID from medium and long COVID, entry and exit into these various groups is easy to over- or underestimate. What few data exist on the likelihood of recovery or remission is inconsistent, and not always rosy: Investigators of RECOVER, a large national study of long COVID, have calculated that about two-thirds of the long-haulers in their cohort do not return to baseline health. Putrino, who has worked with hundreds of long-haulers since the pandemic began, estimates that although most of his patients experience at least some benefit from a few months of rehabilitation, only about one-fifth to one-quarter of them eventually reach the point of feeling about as well as they did before catching the virus, while the majority hit a middling plateau. A small minority of the people he has treated, he told me, never seem to improve at all.
Letícia Soares, a long-hauler in Brazil who caught the virus near the start of the pandemic, falls into that final category. Once a disease ecologist who studied parasite transmission in birds, she is now mostly housebound, working when she is able as a researcher for the Patient-Led Research Collaborative. Her days revolve around medications and behavioral modifications she uses for her fatigue, sleeplessness, and chronic pain. Soares no longer has the capacity to cook or frequently venture outside. And she has resigned herself to this status quo until the treatment landscape changes drastically. It is not the life she pictured for herself, Soares told me. “Sometimes I think the person I used to be died in April of 2020.”
Even long-haulers who have noticed an improvement in their symptoms are wary of overconfidence. Some absolutely do experience what could be called recovery—but for others, the term has gotten loaded, almost a jinx. “If the question is, ‘Are you doing the things you were doing in 2019?’ the answer is largely no,” says JD Davids, a chronic-illness advocate based in New York. For some, he told me, “getting better” has been more defined by a resetting of expectations than a return to good health. Relapses are also not uncommon, especially after repeat encounters with the virus. Lisa McCorkell, a long-hauler and a co-founder of the Patient-Led Research Collaborative, has felt her symptoms partly abate since she first fell ill in the spring of 2020. But, she told me, she suspects that her condition is more likely to deteriorate than further improve—partly because of “how easy it is to get reinfected now.”
Last week, in his State of the Union address, President Joe Biden told the American public that “we have broken COVID’s grip on us.” Highlighting the declines in the rates of COVID deaths, the millions of lives saved, and the importance of remembering the more than 1 million lost, Biden reminded the nation of what was to come: “Soon we’ll end the public-health emergency.”
When the U.S.’s state of emergency was declared nearly three years ago, as hospitals were overrun and morgues overflowed, the focus was on severe, short-term disease. Perhaps in that sense, the emergency is close to being over, Deeks told me. But long COVID, though slower to command attention, has since become its own emergency, never formally declared; for the millions of Americans who have been affected by the condition, their relationship with the virus does not yet seem to be in a better place.
Even with many more health-care providers clued into long COVID’s ills, the waiting lists for rehabilitation and treatment remain untenable, Hannah Davis told me. “I consider myself someone who gets exceptional care compared to other people,” she said. “And still, I hear from my doctor every nine or 10 months.” Calling a wrap on COVID’s “emergency” phase could worsen that already skewed supply-demand ratio. Changes to the nation’s funding tactics could strip resources—among them, access to telehealth; Medicaid coverage; and affordable antivirals, tests, and vaccines—from vulnerable populations, including people of color, that aren’t getting their needs met even as things stand, McCorkell told me. And as clinicians internalize the message that the coronavirus has largely been addressed, attention to its chronic impacts may dwindle. At least one of the country’s long-COVID clinics has, in recent months, announced plans to close, and Davis worries that more could follow soon.
Scientists researching long COVID are also expecting new challenges. Reduced access to testing will complicate efforts to figure out how many people are developing the condition, and who’s most at risk. Should researchers turn their scientific focus away from studying causes and cures for long COVID when the emergency declaration lifts, Davids and others worry that there will be ripple effects on the scientific community’s interest in other, neglected chronic illnesses, such as ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), a diagnosis that many long-haulers have also received.
The end of the U.S.’s official crisis mode on COVID could stymie research in other ways as well. At Johns Hopkins University, the infectious-disease epidemiologists Priya Duggal, Shruti Mehta, and Bryan Lau have been running a large study to better understand the conditions and circumstances that lead to long COVID, and how symptoms evolve over time. In the past two years, they have gathered online survey data from thousands of people who both have and haven’t been infected, and who have and haven’t seen their symptoms rapidly resolve. But as of late, they’ve been struggling to recruit enough people who caught the virus and didn’t feel their symptoms linger. “I think that the people who are suffering from long COVID will always do their best to participate,” Duggal told me. That may not be the case for individuals whose experiences with the virus were brief. A lot of them “are completely over it,” Duggal said. “Their life has moved on.”
Kate Porter, a Massachusetts-based marketing director, told me that she worries about her family’s future, should long COVID fade from the national discourse. She and her teenage daughter both caught the virus in the spring of 2020, and went on to develop chronic symptoms; their experience with the disease isn’t yet over. “Just because the emergency declaration is expiring, that doesn’t mean that suddenly people are magically going to get better and this issue is going to go away,” Porter told me. After months of relative improvement, her daughter is now fighting prolonged bouts of fatigue that are affecting her school life—and Porter isn’t sure how receptive people will be to her explanations, should their illnesses persist for years to come. “Two years from now, how am I going to explain, ‘Well, this is from COVID, five years ago’?” she said.
A condition that was once mired in skepticism, scorn, and gaslighting, long COVID now has recognition—but empathy for long-haulers could yet experience a backslide. Nisreen Alwan, a public-health researcher at the University of Southampton, in the U.K., and her colleagues have found that many long-haulers still worry about disclosing their condition, fearing that it could jeopardize their employment, social interactions, and more. Long COVID could soon be slated to become just one of many neglected chronic diseases, poorly understood and rarely discussed.
Davis doesn’t think that marginalization is inevitable. Her reasoning is grim: Other chronic illnesses have been easier to push to the sidelines, she said, on account of their smaller clinical footprint, but the pool of long-haulers is enormous—comprising millions of people in the U.S. alone. “I think it’s going to be impossible to ignore,” she told me. One way or another, the world will have no choice but to look.
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Katherine J. Wu
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