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Tag: physical therapist

  • ‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’

    ‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’

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    In the weeks after she caught COVID, in May 2022, Lauren Shoemaker couldn’t wait to return to her usual routine of skiing, backpacking, and pregaming her family’s eight-mile hikes with three-mile jogs. All went fine in the first few weeks after her infection. Then, in July, hours after finishing a hike, Shoemaker started to feel off; two days later, she couldn’t make it to the refrigerator without feeling utterly exhausted. Sure it was a fluke, she tried to hike again—and this time, was out of commission for months. Shoemaker, an ecologist at the University of Wyoming, couldn’t do her alpine fieldwork; she struggled to follow a movie with a complex plot. She was baffled. Exercise, the very thing that had reliably energized her before, had suddenly become a trigger for decline.

    For the majority of people, exercise is scientifically, physiologically, psychologically good. It boosts immunity, heart function, cognition, mood, energy, even life span. Doctors routinely prescribe it to patients recovering from chronic obstructive pulmonary disease and heart attacks, managing metabolic disease, or hoping to stave off cognitive decline. Conditions that worsen when people strive for fitness are very rare. Post-exertional malaise (PEM), which affects Shoemaker and most other people with long COVID, just happens to be one of them.

    PEM, first described decades ago as a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is now understood to fundamentally alter the body’s ability to generate and use energy. For people with PEM, just about any form of physical, mental, or emotional exertion—in some cases, activities no more intense than answering emails, folding laundry, or digesting a particularly rare steak—can spark a debilitating wave of symptoms called a crash that may take weeks or months to abate. Simply sitting upright for too long can leave Letícia Soares, a long-hauler living in Brazil, temporarily bedbound. When she recently moved into a new home, she told me, she didn’t bother buying a dining table or chairs—“it just felt useless.”

    Read: How much less to worry about long COVID now

    When it comes to PEM, intense exercise—designed to boost fitness—is “absolutely contraindicated,” David Putrino, a physical therapist who runs a long-COVID clinic at Mount Sinai, in New York, told me. And yet, the idea that exertion could undo a person rather than returning them to health is so counterintuitive that some clinicians and researchers still endorse its potential benefits for those with PEM; it’s dogma that Shoemaker heard repeatedly after she first fell ill. “If exercise could cure this,” she told me, “I would have been cured so quickly.”

    The problem is, there’s no consensus about what people who have PEM should do instead. Backing off physical activity too much might start its own downward spiral, as people lose muscle mass and strength in a phenomenon called deconditioning. Navigating the middle ground between deconditioning and crashing is “where the struggle begins,” Denyse Lutchmansingh, a pulmonary specialist at Yale, told me. And as health experts debate which side to err on, millions of long-haulers are trying to strike their own balance.

    Though it’s now widely accepted that PEM rejiggers the body’s capacity for strain, scientists still aren’t sure of the precise biological causes. Some studies have found evidence of impaired blood flow, stymieing the delivery of oxygen to cells; others have discovered broken mitochondria struggling to process raw fuel into power. A few have seen hints of excessive inflammation, and immune cells aberrantly attacking muscles; others point to issues with recovery, perhaps via a slowdown in the clearance of lactate and other metabolic debris.

    The nature of the crashes that follow exertion can be varied, sprawling, and strange. They might appear hours or days after a catalyst. They can involve flu-like coughs or sore throats. They may crater a patient’s cognitive capacity or plague them with insomnia for weeks; they can leave people feeling so fatigued and pained, they’re almost unable to move. Some of Shoemaker’s toughest crashes have saddled her with tinnitus, numbness, and extreme sensitivity to sound and light. Triggers can also change over time; so can people’s symptoms—even the length of the delay before a crash.

    But perhaps the worst part is what an accumulation of crashes can do. Rob Wüst, who studies skeletal-muscle physiology at Amsterdam University Medical Center, told me that his team has found an unusual amount of muscle damage after exertion in people with PEM that may take months to heal. People who keep pushing themselves past their limit could watch their baseline for exertion drop, and then drop again. “Every time you PEM yourself, you travel a little further down the rabbit hole,” Betsy Keller, an exercise physiologist at Ithaca College, told me.

    Read: Long COVID has forced a reckoning for one of medicine’s most neglected diseases

    Still, the goal of managing PEM has never been to “just lay in a bed all day and don’t do anything,” Lily Chu, the vice president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), told me. In the 1960s, a group of scientists found that three weeks of bed rest slashed healthy young men’s capacity for exertion by nearly 30 percent. (The participants eventually trained themselves back to baseline.) Long periods of bed rest were once commonly prescribed for recovery from heart attacks, says Prashant Rao, a sports cardiologist at Beth Israel Deaconess Medical Center, in Massachusetts. But now too much rest is actively avoided, because “there’s a real risk of spiraling down, and symptoms worsening,” Rao told me. “I really fear for that, even for people with PEM.”

    There is no rulebook for threading this needle, which has led researchers to approach treatments and rehabilitation for long COVID in different ways. Some clinical trials that involve exercise as an intervention explicitly exclude people with PEM. “We did not feel like the exercise program we designed would be safe for those individuals,” Johanna Sick, a physiologist at the University of Vienna who is helping run one such trial, told me.

    Other researchers hold out hope that activity-based interventions may still help long-haulers, and are keeping patients with PEM in experiments. But some of those decisions have been controversial. The government-sponsored RECOVER trial was heavily criticized last year for its plan to enroll long-haulers in an exercise study. Scientists have since revised the trial’s design to reroute participants with moderate to severe PEM to another intervention, according to Adrian Hernandez, the Duke cardiologist leading the trial. The details are still being finalized, but the plan is to instead look at pacing, a strategy for monitoring activity levels to ensure that people stay below their crash threshold, Janna Friedly, a physiatrist at the University of Washington who’s involved in the trial, told me.

    Certain experimental regimens can be light enough—stretching, recumbent exercises—to be tolerable by many (though not all) people with PEM. Some researchers are trying to monitor participants’ heart rate, and having them perform only activities that keep them in a low-intensity zone. But even when patients’ limitations are taken into account, crashes can be hard to avoid, Tania Janaudis-Ferreira, a physiotherapist at McGill University, in Quebec, told me. She recently wrapped a clinical trial in which, despite tailoring the regimen to each individual, her team still documented several mild to moderate crashes among participants with PEM.

    Read: Long COVID is being erased—again

    Just how worrisome crashes are is another matter of contention. Pavlos Bobos, a musculoskeletal-health researcher at the University of Western Ontario, told me that he’d like to see more evidence of harm before ruling out exercise for long COVID and PEM. Bruno Gualano, a physiologist at the University of São Paulo, told me that even though crashes seem temporarily damaging, he’s not convinced that exercise worsens PEM in the long term. But Putrino, of Mount Sinai, is adamant that crashes set people back; most other experts I spoke with agreed. And several researchers told me that, because PEM seems to upend basic physiology, reduced activity may not be as worrisome for people with the condition as it is for those without.

    For Shoemaker, the calculus is clear. “Coming back from being deconditioned is honestly trivial compared to recovering from PEM,” she told me. She’s willing to wait for evidence-based therapies that can safely improve her PEM. “Whatever we figure out, if I could get healthy,” she told me, “then I can get back in shape.”

    At this point, several patients and researchers told me, most exercise-based trials for long COVID seem to be at best a waste of resources, and at worst a recipe for further harm. PEM is not new, nor are the interventions being tested. Decades of research on ME/CFS have already shown that traditional exercise therapy harms more often than it helps. (Some researchers insisted that more PEM studies are needed in long-haulers—just in case the condition diverges substantially from its manifestation in ME/CFS.) And although a subset of long-haulers could be helped by exercise, experts don’t yet have a great way to safely distinguish them from the rest.

    Even pacing, although often recommended for symptom management, is not generally considered to be a reliable treatment, which is where most long-COVID patient advocates say funds should be focused. Ideally, Putrino and others told me, resources should be diverted to trials investigating drugs that might address PEM’s roots, such as the antiviral Paxlovid, which could clear lingering virus from long-haulers’ tissues. Some researchers are also hopeful about pyridostigmine, a medication that might enhance the delivery of oxygen to tissues, as well as certain supplements that might support mitochondria on the fritz.

    Those interventions are still experimental—and Putrino said that no single one is likely to work for everyone. That only adds to the challenge of studying PEM, which has been shrouded in disbelief for decades. Despite years of research on ME/CFS, Chu, of the IACFS/ME, told me that many people with the condition have encountered medical professionals who suggest that they’re just anxious, even lazy. It doesn’t help that there’s not yet a blood test for PEM; to diagnose it, doctors must ask their patients questions and trust the answers. Just two decades ago, researchers and physicians speculated that PEM stemmed from an irrational fear of activity; some routinely prescribed therapy, antidepressants, and just pushing through, Chu said. One highly publicized 2011 study, since widely criticized as shoddy science, appeared to support those claims—influencing treatment recommendations from top health authorities such as the CDC.

    The CDC and other organizations have since reversed their position on exercise and cognitive behavioral therapy as PEM treatments. Even so, many people with long COVID and ME/CFS are still routinely told to blow past their limits. All of the long-haulers I spoke with have encountered this advice, and learned to ignore it. Fighting those calls to exercise can be exhausting in its own right. As Ed Yong wrote in The Atlantic last year, American society has long stigmatized people who don’t push their way through adversity—even if that adversity is a medically documented condition that cannot be pushed through. Reconceptualizing the role of exercise in daily living is already a challenge; it is made all the more difficult when being productive—even overworked—is prized above all else.

    Read: Fatigue can shatter a person

    Long-haulers know that tension intimately; some have had to battle it within themselves. When Julia Moore Vogel, a researcher at Scripps, developed long COVID in the summer of 2020, she was at first determined to grit her way through. She took up pilates and strength training, workouts she at the time considered gentle. But the results were always the same: horrific migraines that relegated her to bed. She now does physical therapy to keep herself moving in safe and supervised amounts. When Vogel, a former competitive runner, started her program, she was taken aback by how little she was asked to do—sometimes just two reps of chin tucks. “I would always laugh because I would be like, ‘These are not exercises,’” she told me. “I’ve had to change my whole mental model about what exercise is, what exertion is.”

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    Katherine J. Wu

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  • A Modest Proposal to Save Mothers’ Lives

    A Modest Proposal to Save Mothers’ Lives

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    At the busy county hospital where I did my medical residency, we cared for patients with every imaginable problem. But one part of treatment was always the same: As soon as it was deemed medically safe, a physical or occupational therapist would visit each and every patient. In the intensive-care unit, a physical therapist might assist a patient into a sitting position at the edge of the bed. An occupational therapist might help her relearn how to hold a fork after weeks of being fed by a tube. On the general-medical and surgical wards, at least one or two patients could always be found walking the long hallways with a walker or cane, a strong and amiable physical therapist keeping pace beside them, casually asking crucial questions: “Are there any stairs in your home?” “Who does the laundry and cooking?” “Who will be around to help you?”

    But there was one area of the hospital where physical and occupational therapists weren’t involved in patient care: the maternity ward. In many hospitals, this is still true. Although I now work in outpatient OB-GYN care, my colleagues in Labor and Delivery confirm that PT/OT doesn’t have a large presence there. Amy Willats, a nurse-midwife in the San Francisco Bay Area, told me that she orders physical therapy for new mothers only in rare circumstances—“when someone is in so much pain, they can’t walk to the bathroom.” As for occupational therapy, she said, “it’s not even on my radar.”

    Some physical and occupational therapists want this status quo to change. They believe that everyone who gives birth should receive a PT/OT evaluation prior to discharge, with the same goal as for any other hospitalized patient: to prepare them to move around safely and comfortably at home. I remember how easily, in the chaotic world of the hospital, I could overlook the quiet work of physical and occupational therapists. But the extra layer of attention and care they provide could help millions of new mothers recover faster—and may even save lives.

    Pregnant women and new mothers are, in a sense, different from other hospitalized patients. Doctors tend to think of them as healthy young people undergoing a normal, natural process, one that should require serious medical intervention only occasionally. This is how my patients tend to see themselves too—and most of them do go on to live normal, if changed, lives. By this philosophy, what new mothers need isn’t intensive rehab, but a brief period (one or two days) of observation, some education about how to feed and care for their baby, and then a timely discharge home, with a single postpartum visit a few weeks later. Indeed, this laissez-faire approach is the standard of care in many U.S. hospitals.

    But as the U.S. faces a surging maternal-mortality rate, with more than half of maternal deaths occurring after delivery, physicians are now in wide agreement that the standard of care needs to change. Pregnant women in the U.S. are not as young as they once were. Pregnancy and childbirth can present grave dangers—particularly when a woman already has underlying health conditions. A vaginal delivery is an intense physiological event that involves the rapid expansion and then contraction of the musculoskeletal system, along with dramatic shifts in hormones, blood volume, and heart rate. A Cesarean section is a major surgery that involves cutting through layers of skin, fascia, and muscle—and that’s if everything goes perfectly.

    Read: The mothers who can’t escape the trauma of childbirth

    Rebeca Segraves, a Washington State–based doctor of physical therapy specializing in women’s health, told me she was struck early in her career by the realization that women undergoing a C-section did not receive routine postoperative PT. She was used to performing inpatient evaluations for patients recovering from relatively minor illnesses and surgeries, such as pneumonia, gallbladder removal, and prostatectomy. But after a C-section, she says, a PT evaluation “just wasn’t the culture.” She set out to change that.

    For most people, if the phrase postpartum physical therapy calls to mind anything at all, it’s pelvic-floor PT. In the early 2010s, American women living abroad introduced U.S. audiences to the French practice of perineal “reeducation,” a comprehensive exercise regimen prescribed for every postpartum mother and subsidized by the French government, designed to retrain the muscles of the pelvic floor after birth. Since then, U.S. researchers and the popular press have documented the widespread and devastating effects of urinary incontinence, pelvic-organ prolapse, and chronic pelvic pain—issues that can be overlooked or dismissed at the postpartum visit.

    But Segraves is arguing for postpartum PT/OT that goes beyond the pelvic floor. Segraves has developed an approach called “enhanced recovery after delivery” (ERAD), essentially a training program for OB-GYN departments and hospital-based PT/OT staff that encourages an evaluation for every woman after childbirth. ERAD includes an assessment of body mechanics and cardiopulmonary function, gait retraining, infant lifting and lowering techniques, and (in the case of C-section) incision-protection training. Crucially, a therapist also monitors the woman’s bodily responses—such as pain and vital signs—while she practices these simple home activities in the hospital.

    Segraves believes that these interventions could be lifesaving. Warning signs of the major postpartum killers—including preeclampsia, stroke, hemorrhage, and infection—sometimes manifest right away, but in many cases they don’t appear until a woman returns home, where they may go unrecognized. The more attention paid to new mothers in the hospital—particularly while they’re moving around, Segraves argues—the more likely providers are to catch these warning signs.

    Read: An awkward evolutionary theory for one of pregnancy’s biggest complications

    As an example, Segraves told me about a patient she met a few years ago who had suffered a third-degree perineal laceration (a particularly severe birth injury) during a vaginal delivery. At the time, Segraves was primarily focused on providing physical therapy after C-sections, but her team advocated for this woman to receive a PT evaluation prior to discharge. When the woman tried to stand and walk, her blood pressure shot to a dangerously high level. Ultimately, the patient was transferred to the ICU and diagnosed with severe preeclampsia.

    Anecdotes like these make a powerful case for universal PT/OT for new mothers. But as yet, there’s no proof that it could affect postpartum outcomes on a large scale. To get this kind of evidence, Segraves will need a clinical trial. So far, she told me, she’s gotten a grant to study physicians’ and therapists’ attitudes toward routine postpartum PT/OT.

    Her research is in the early stages, but my conversations with maternal-care specialists suggest that attitudes are mixed. Olga Ramm, a urogynecologist in the San Francisco Bay Area, told me she worries that PT/OT for all pregnant women could be hard to implement universally, “because so much of it really depends on that interpersonal relationship and connection between the patient and the therapist.” Funding is an issue too: Physical and occupational therapists are licensed professionals whose services aren’t cheap, and many hospitals are already strapped for cash and staff. Adding a PT/OT evaluation for every hospitalized patient “seems like a fairly expensive way” to bolster postpartum services, Ramm said. Willats, the nurse-midwife, agreed. “The way we educate people should change,” she said. “We don’t necessarily need a different group of people to do that education.”

    Then again, physical and occupational therapists may be uniquely positioned to do this work. Unlike doctors, who are usually trained to think about patients as sick or healthy, PTs and OTs are interested in how a person’s body serves her in her daily life—what Segraves calls “roles and routines.” This means seeing a new mother as someone who is about to return home in a changed body, who will need to lift, rock, and soothe a newborn; perform heavy chores such as cleaning and laundry; and perhaps breastfeed that newborn, whose kicking feet land right on a fresh C-section scar. PT/OT is about helping her adapt to all of these changes with intention and care.

    Read: A surprising side effect of giving birth  

    Doctors and patients tend to think of physical therapy as primarily a set of rehab exercises that help a patient recover from an injury. But another way to view PT and OT is as an opportunity, inside the overwhelming world of the hospital, for a skilled professional to see and treat the patient as a whole person. Segraves told me the story of a young woman with a high-risk pregnancy and a prolonged hospital stay, during which baby gifts from friends and family piled up around the room. After several agonizing weeks, she delivered a stillbirth by C-section. A few days later, Segraves watched as an occupational therapist sat by the patient’s side, helping her fold all of those tiny newborn clothes, tucking them neatly back into gift bags for her to take home. At that moment, Segraves said with a touch of awe in her voice, the young woman was “more functional than any of us had seen her up to that point.”

    When I consider this story, I can’t help but recall the therapists strolling the hallways of my residency hospital, asking my patients questions I’d never bothered to address—about their home, their life, their “roles and routines.” Really, the questions they were asking were much deeper—and exactly the ones that are central to new motherhood: How will you manage in this new body, this new life? Who will you be?

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    Christine Henneberg

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  • The Future of Long COVID

    The Future of Long COVID

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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.

    Read: We’re bungling the COVID wind-down

    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.

    Read: The flu-ification of COVID policy is almost complete

    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.

    Read: Trying to stop long COVID before it even starts

    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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  • The Obama Nostalgia Show

    The Obama Nostalgia Show

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    PHILADELPHIA—Outside the basketball arena at Temple University, a long line of anxious Democrats contemplated their party’s possibly bleak political future, as a brass band played Taylor Swift’s “Shake It Off.”

    That strange juxtaposition of dread and joy seemed to be the theme of Saturday afternoon’s rally at the Liacouras Center. Democrats were happy to hear a closing campaign message from President Joe Biden, and excited to show their support for Senate candidate John Fetterman, gubernatorial hopeful Josh Shapiro, and the rest of the Democratic slate. They were cautiously hopeful, in their Fetterman gear and Phillies hats. But they also see the present moment as an unusually perilous one—for the future of the party, and for democracy itself. So they were desperate, more than anything, for some last-minute reassurance and inspiration from their one-time party leader.

    “Obama has a gift for putting things in perspective, that makes [politics] accessible to just about everybody,” Barbara Pizzutillo, a physical therapist from the Philadelphia suburbs, told me before the rally. “To see the excitement in the crowd is what we need right now.” A Philly native named Kip Williams said he was excited just to be there, near the band. “This line inspires me. I got a real good hope for Tuesday!”

    When the 44th president came on stage, the crowd greeted him like a long lost friend—or a favorite teacher who’d returned after a series of varyingly unimpressive substitutes.

    “The kind of slash and burn politics that we’re seeing right now, that doesn’t have to be who we are. We can be better,” Barack Obama said, coming on stage after Biden, Shapiro, and Fetterman. “I believe things will be okay,” he assured the audience. “They’ll be okay if we make the effort … not just on Election Day but every day in between.”

    Read: Do voters care about John Fetterman’s stroke?

    Polls have been tightening in recent weeks, especially in Pennsylvania, where the Republican candidate Mehmet Oz is now virtually tied with Fetterman in the race to replace Pat Toomey in the U.S. Senate. In Arizona, Republican Blake Masters is catching up to Democratic Senator Mark Kelly, and in Georgia, apparently no number of abortion-related scandals can keep the anti-abortion Republican Herschel Walker down in his race against the Democrat Raphael Warnock. And nationwide, a majority of Republican candidates on the midterms ballot maintain that Biden didn’t win the election in 2020.

    Which is why, three days before Election Day, Democrats have broken out their biggest gun of all. Pennsylvania was the latest stop on a swing-state tour that Obama began only about a week ago in a last-ditch effort to energize voters in Arizona and Wisconsin. Events like these are not meant to persuade undecideds; they’re to reward activists and volunteers, and help turn out the base—the people who will knock on doors and give rides to the polling station on Election Day.

    “Like Brad Lidge in 2008,” said Anthony Stevenson, likening the pitcher who helped Stevenson’s hometown Phillies win the World Series to the Democrat who gained the White House that same year. “He’s the closer!”

    How effective this rally will be, just 48 hours before Election Day, is hard to know. But the promise of hearing from Obama was enough for voters at Saturday night’s rally. They needed to hear from him, they told me, because they needed to remember what politics used to be like—and, they hoped, could be again.

    Biden opened the event, but Obama was the headliner. Right away, the former president was in his element, fluent with the gags and punchlines: “Don’t boo! Vote!” He teased Fetterman for being “just a dude” who wore shorts in the winter. (Fetterman had earlier tweeted how he’d “dressed up (wore pants)” to meet Obama on a previous occasion.) But there were serious moments, too.

    Obama dutifully bashed Oz’s “snake oil” peddling and GOP gubernatorial candidate Doug Mastriano’s extremist beliefs. And he reminded the audience that the Democrats had been “shellacked” in the 2010 midterms when he was president, and took a drubbing again in 2014. The same would happen this year, he warned—if they didn’t turn up at the polls.

    “I understand that democracy might not seem like a top priority right now, especially when you’re worried about paying the bills,” Obama said, echoing Biden’s choice recently to focus message. But “when true democracy goes away, people get hurt. It has real consequences.”

    Voters last night seemed to feel the weight of his words. “It used to be that you were just voting on politics and ideology,” Jody Boches, from nearby Abington Township, told me. “Now the integrity of all these institutions and the right to vote and the wellbeing of our democracy” are under threat. When I asked about what it meant to see Obama, Boches gestured to her cell phone and laughed. “My daughter who’s at grad school at UVA has asked me to record him speaking, just so she can remember what it was like to hear him speak.”

    Read: Trump returns to rally team MAGA

    Some at the rally expressed a very qualified optimism. The main priority for everyone I spoke to was abortion—coupled with the hope that the Supreme Court’s overturning of Roe v. Wade could be what boosts Democratic turnout this year. Mary Halanan, from Doylestown, told me that she could envision a strong bloc of such voters emerging on Tuesday—“people like me,” she said. “I’m hoping I’m the silent majority.”

    Others were more nervous about what next week will bring. As once-promising Senate races have tightened, the prospects for the president’s party in the House are grim. Republicans need to pick up only five seats to take a majority; they seem poised to do much better than that. Even if the Democrats keep control of the Senate—at best, a tenuous proposition—the rest of Biden’s term in the White House seems certain to involve a barrage of investigations and impeachment attempts, rather than any effort toward bipartisan legislation.

    Again and again, the Democrats I spoke to in the crowd told me how much they missed Obama’s thoughtfulness and compassion. Their longing was all the more poignant for what it seemed to say about what they found missing from the Democratic leadership today: They don’t make ’em like that anymore.

    When the rally was over, Rosalin Franklin and Pam Parseghian stood side by side, waiting to cross the street. “We were just talking about how he brings people together,” Parseghian said, with a sigh. “Here he is talking about his wife, talking about the good.” And she reenacted his words: “Believe in science! Believe in the future!”

    After Parseghian and Franklin finished explaining how delighted they’d been by Obama’s appearance, I asked whether they felt more confident about their party’s electoral outlook than they had before the rally. Both women paused. “Yes,” Parseghian said eventually. Franklin nodded slowly. “Yeah … still worried. But yeah.”

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    Elaine Godfrey

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