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Tag: cases of long COVID

  • What Doctors Still Don’t Understand About Long COVID

    What Doctors Still Don’t Understand About Long COVID

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    As a pulmonary specialist, I spend most of my clinical time in the hospital—which, during pandemic surges, has meant many long days treating critically ill COVID-19 patients in the ICU. But I also work in an outpatient clinic, where I also treat those same sorts of patients after they’re discharged: people who survived weeks-long hospitalizations but have been dealing ever since with lung damage. Such patients often face the same social and economic factors that made them vulnerable to COVID-19 to begin with, and they require attentive care.

    Patients like these undoubtedly suffer what researchers have been calling post-acute sequelae of SARS-CoV-2, or PASC—which, according to one highly publicized recent CDC study, afflicts some 20 percent of COVID-19 survivors ages 18 to 64. Other studies have yielded lower estimates of the condition also called long COVID, and while differences in study methodology account for some of this variability, there’s a more fundamental issue eluding efforts to uncover the one “true” estimate of the likelihood of this condition. Quite simply, long COVID isn’t any one thing.

    From the April 2021 issue: Unlocking the mysteries of long COVID

    The wide spectrum of conditions that fall under the umbrella of long COVID impedes researchers’ ability to interpret estimates of national prevalence based on surveys of symptoms, which conflate different problems with different causes. More importantly, however, an incomplete and constrained perspective on what long COVID is or isn’t limits Americans’ understanding of who is suffering and why, and of what we can do to improve patients’ lives today.

    The cases of long COVID that turn up in news reports, the medical literature, and in the offices of doctors like me fall into a few rough (and sometimes overlapping) categories. The first seems most readily explainable: the combination of organ damage, often profound physical debilitation, and poor mental health inflicted by severe pneumonia and resultant critical illness. This serious long-term COVID-19 complication gets relatively little media attention despite its severity. The coronavirus can cause acute respiratory distress syndrome, the gravest form of pneumonia, which can in turn provoke a spiral of inflammation and injury that can end up taking down virtually every organ. I have seen many such complications in the ICU: failing hearts, collapsed lungs, failed kidneys, brain hemorrhages, limbs cut off from blood flow, and more. More than 7 million COVID-19 hospitalizations occurred in the United States before the Omicron wave, suggesting that millions could be left with damaged lungs or complications of critical illness. Whether these patients’ needs for care and rehabilitation are being adequately (and equitably) met is unclear: Ensuring that they are is an urgent priority.

    Recently, a second category of long COVID has made headlines. It includes the new onset of recognized medical conditions—like heart disease, a stroke, or a blood clot—after a mild COVID-19 infection. It might seem odd that an upper respiratory tract infection could trigger a heart attack. Yet this pattern has been well described after other common respiratory-virus infections, particularly influenza. Similarly, various types of infections can lead to blood clots in the legs, which can travel (dangerously) to the lungs. Respiratory infections are not hermetically sealed from the rest of the body; acute inflammation arising in one location can sometimes have consequences elsewhere.

    But mild COVID-19 is so common that measuring the prevalence of such complications—which also regularly occur in people without COVID-19—can be tricky. Well-controlled investigations are needed to disentangle causation and correlation, particularly because social disadvantage is associated both with COVID exposure and illnesses of basically every organ system. Some such studies, which analyzed giant electronic-health-record databases, have suggested that even mild COVID-19 is at least correlated with a startlingly wide spectrum of seemingly every illness, including diabetes, asthma, and kidney failure; basically every type of heart disease; alcohol-, benzodiazepine-, and opioid-use disorders; and much more.

    To be clear, this research generally suggests that such complications occur far less often after mild COVID-19 cases than severe ones, and the extent to which the coronavirus causes each such complication remains unclear. In other words, we can surmise that at least some of these complications (particularly vascular complications, which have been well-described in many studies) are likely a consequence of COVID-19, but we can’t say with certainty how many. And more importantly, we don’t yet understand why some people with mild COVID recover easily while others go on to experience such complications. However, an estimated 81 percent of Americans have now been infected at least once, so the public-health ramifications are large even if COVID causes only some of the aforementioned recognized diseases, and even if our individual risk of complications after a mild infection is modest. Regardless of cause, patients who do develop any such chronic diseases require attentive, ongoing medical care—a challenge in a nation where 30 million are uninsured and even more underinsured.

    Another category of long COVID is something rather more quotidian, if still very distressing for those experiencing it: respiratory symptoms that last longer than expected after an acute upper-respiratory infection caused by the coronavirus, but that are not associated with lung damage, critical illness, or a new diagnosis like a heart attack or diabetes. Symptoms such as shortness of breath and chest pain are common months after run-of-the-mill pneumonia unconnected to the coronavirus, for instance, while many patients who contract non-COVID-related upper respiratory infections subsequently report a protracted cough or a lingering loss of their sense of smell. That a COVID-related airway infection sometimes has similar consequences only stands to reason.

    Read: Long-haulers are fighting for their future

    However, none of these may be what most people think of when long COVID is invoked. Some may even argue that such syndromes are not, in fact, long COVID at all, even if they cause long-term suffering. “Long Covid is not a condition for which there are currently accepted objective diagnostic tests or biomarkers,” wrote Steven Phillips and Michelle Williams in the New England Journal of Medicine. “It is not blood clots, myocarditis, multisystem inflammatory disease, pneumonia, or any number of well-characterized conditions caused by Covid-19.” Instead, for some the term may invoke a chronic illness—a complex of numerous unexplained, potentially debilitating symptoms—even among those who may barely have felt sick with COVID in the acute phase. Symptoms may vary widely, and include severe fatigue, cognitive issues often described as brain fog, shortness of breath, “internal tremors,” gastrointestinal problems, palpitations, dizziness, and many other issues around the body—all typically following a mild acute respiratory infection. If the other forms of long COVID seem more easily explainable, this type is often characterized as a medical mystery.

    Teasing apart which kind of long COVID a person has is important, both to advance our understanding of the illness and to best care for people. Yet lumping and splitting varieties of long COVID into categories is not easy. A given patient’s case might have features of more than one of the types that I’ve described here. Some patient advocates and researchers have tended to exclude patients in the first category—that is, survivors of protracted critical illness—from their conception of COVID long-haulers. I would argue that, insofar as we define long COVID as lasting damage and symptoms imposed by SARS-CoV-2, the full variety of severe long-term manifestations should be included in its scope. “Clinical phenotyping” studies now under way may eventually help scientists and doctors better understand the needs of different types of patients, but patients in all categories deserve better care today.

    The biological mechanisms by which an acute coronavirus upper respiratory infection might lead to a bewildering range of chronic, burdensome symptoms even in the aftermath of mild infections are debated. Some scientists, for instance, believe that the virus causes an autoimmune disease akin to lupus. Meanwhile, one group of researchers has argued that even a mild respiratory infection from SARS-CoV-2 causes tiny clots to block tiny blood vessels all over the body, depriving tissues of oxygen throughout the body. Still others believe that the coronavirus causes a chronic infection, as such viruses as HIV or hepatitis C do. Meanwhile, some have emphasized the possibility of structural brain damage. While some published studies have provided support for each theory, none has been adequately validated as a central unifying thesis. Each is, however, worth continuing to explore.

    A recently published investigation, conducted at the National Institutes of Health, suggests that clinicians and scientists should consider additional possibilities as potential drivers of symptoms for at least some patients. The researchers found far higher levels of physical symptoms and mental distress among subjects who had had COVID (many with long COVID) than among those who had not. Yet symptoms could not be explained by basically any test results: Researchers found effectively no substantive differences in markers of inflammation or immune activation, in objective neurocognitive testing, or in heart, lung, liver, or kidney function. And yet these patients were suffering from such symptoms as fatigue, shortness of breath, concentration and memory problems, chest pain, and more. Notably, researchers did not identify viral persistence in the bodies of patients reporting troublesome symptoms.

    What this means in practice is that there are some people suffering from long COVID symptoms without evidence of structural damage to the body, autoimmunity, or chronic infection. Psychosocial strain and suffering, moreover, appears common in this population. Even pointing this out is sensitive territory—it leads some people to wrongly suggest that long COVID is less severe or concerning than those suffering from it describe, or even to question the reality of the illness. And, understandably, the invocation of psychosocial factors as potential contributing factors to suffering for some individuals may make patients feel as though they are being second-guessed. The reality, though, is that psychosocial strain is an important driver of physical symptoms and suffering—one that clinicians should treat with empathy. All suffering, after all, is ultimately produced and perceived in one place: our brain.

    Severe depression, for instance, can inflict debilitating and severe physical symptoms of every sort, including crushing fatigue and withering brain fog, and is itself linked to having had COVID-19. And notably, a recent study in JAMA Psychiatry found that pre-infection psychosocial distress—e.g. depression, anxiety, or loneliness—was associated with a 30–50 percent increase in the risk of long COVID among those infected, even after adjustment for various factors. A false separation of brain and body has long plagued medicine, but it does not reflect biological reality: After all, diverse neuropsychiatric processes are associated with numerous “physical” changes, ranging from reduced blood flow to the brain to high (or low) levels of the stress hormone cortisol.

    Illnesses of any cause that result in protracted time off one’s feet can also instigate (likely in conjunction with other factors) reversible cardiovascular deconditioning, wherein the blood volume contracts and the amount of blood ejected by the heart with each squeeze falls—changes that can lead to a racing heart rate or faintness when standing, as decades of studies have shown. Diverse neurological symptoms can also be produced by a glitch in the function rather than the structure of the brain—or what has been described as problems of brain “software” rather than “hardware”—resulting in conditions known as functional neurological disorders. Similar glitches, known as functional respiratory disorders, can disturb our breathing patterns or cause shortness of breath, even when our lungs are structurally normal. My point is not to speculate on some overarching hypothesis to explain all symptoms among all patients with long COVID. The whole point is that there’s unlikely to be just one. And there is still much to learn.

    Research is underway to better understand this spectrum of illnesses, and their causes. But whichever diverse factors might be contributing to patients’ symptoms, we can take steps—both among clinicians and as a society—to improve lives now. Social supports can be as important as medical interventions: For those unable to work, qualification for disability assistance should not depend on a particular lab or lung-function test result. All patients with long-COVID symptoms deserve and require high-quality medical care without onerous cost barriers that may bankrupt them, which further compounds suffering. Universal healthcare is, that is to say, desperately needed to respond to this pandemic and its aftermath.

    Additionally, while no specific long-COVID medications have emerged, some treatments may be helpful for improving certain symptoms regardless of the specific type of illness, such as physical rehabilitative treatments for those with shortness of breath or reduced exercise tolerance. Ensuring universal access to such specialized rehabilitative care is essential as we enter the next stage of this pandemic. So is helping patients avoid the emerging cottage industry of dodgy providers hawking unproven long-COVID therapies. Health-care professionals also need more education about the broad spectrum of COVID-19-related issues, both to improve care and reduce stigmatization of patients with all types of this illness.

    Read: The pandemic after the pandemic

    Doctors and scientists still have much to learn about symptoms that continue—or first turn up—months or weeks after an initial COVID infection. What’s clear today is that long COVID can be many different things. That may confound our efforts to categorize it and discuss its implications, but the sheer variety should not get in the way of care for all who are suffering.

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    Adam Gaffney

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  • Warning Signs About the First Post-pandemic Winter

    Warning Signs About the First Post-pandemic Winter

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    This fall, unlike the one before it, and the one before that, America looks almost like its old self. Schools and universities are in session; malls, airports, and gyms are bustling with the pre-holiday rush; handwashing is passé, handshakes are back, and strangers are packed together on public transport, nary a mask to be seen. On its surface, the country seems ready to enjoy what some might say is our first post-pandemic winter.

    Americans are certainly acting as if the crisis has abated, and so in that way, at least, you could argue that it has. “If you notice, no one’s wearing masks,” President Joe Biden told 60 Minutes in September, after proclaiming the pandemic “over.” Almost no emergency protections against the virus are left standing; we’re dismantling the few that are. At the same time, COVID is undeniably, as Biden says, “a problem.” Each passing day still brings hundreds of deaths and thousands of hospitalizations; untold numbers of people continue to deal with long COVID, as more join them. In several parts of the country, health-care systems are struggling to stay afloat. Local public-health departments, underfunded and understaffed, are hanging by a thread. And a double surge of COVID and flu may finally be brewing.

    So we can call this winter “post-pandemic” if we want. But given the policy failures and institutional dysfunctions that have accumulated over the past three years, it won’t be anything like a pre-pandemic winter, either. The more we resist that reality, the worse it will become. If we treat this winter as normal, it will be anything but.

    By now, we’ve grown acquainted with the variables that dictate how a season with SARS-CoV-2 will go. In our first COVID winter, the vaccines had only just begun their trickle out into the public, while most Americans hadn’t yet been infected by the virus. In our second COVID winter, the country’s collective immunity was higher, but Omicron sneaked past some of those defenses. On the cusp of our third COVID winter, it may seem that SARS-CoV-2 has few plot twists left to toss us.

    But the way in which we respond to COVID could still sprinkle in some chaos. During those first two winters, at least a few virus-mitigating policies and precautions remained in place—nearly all of which have since come down, lowering the hurdles the virus must clear, at a time when America’s health infrastructure is facing new and serious threats.

    The nation is still fighting to contain a months-long monkeypox outbreak; polio continues to plague unvaccinated sectors of New York. A riot of respiratory viruses, too, may spread as temperatures cool and people flock indoors. Rates of RSV are rising; flu returned early in the season from a nearly three-year sabbatical to clobber Australia, boding poorly for us in the north. Should flu show up here ahead of schedule, Americans, too, could be pummeled as we were around the start of 2018, “one of the worst seasons in the recent past,” says Srinivasan Venkatramanan, an infectious-disease modeler at the University of Virginia and a member of the COVID-19 Scenario Modeling Hub.

    Read: Fauci addresses ‘The pandemic is over’

    The consequences of this infectious churn are already starting to play out. In Jackson, Mississippi, health workers are watching SARS-CoV-2 and other respiratory viruses tear through children “like nothing we’ve ever seen before,” says Charlotte Hobbs, a pediatric-infectious-disease specialist at the University of Mississippi Medical Center. Flu season has yet to go into full swing, and Hobbs is already experiencing one of the roughest stretches she’s had in her nearly two decades of practicing. Some kids are being slammed with one virus after the other, their sicknesses separated by just a couple of weeks—an especially dangerous prospect for the very youngest among them, few of whom have received COVID shots.

    The toll of doctor visits missed during the pandemic has ballooned as well. Left untreated, many people’s chronic conditions have worsened, and some specialists’ schedules remain booked out for months. Add to this the cases of long COVID that pile on with each passing surge of infections, and there are “more sick people than there used to be, period,” says Emily Landon, an infectious-disease physician at the University of Chicago. That’s with COVID case counts at a relative low, amid a massive undercount. Even if a new, antibody-dodging variant doesn’t come banging on the nation’s door, “the models predict an increase in infections,” Venkatramanan told me. (In parts of Europe, hospitalizations are already making a foreboding climb.)

    And where the demand for care increases, supply does not always follow suit. Health workers continue to evacuate their posts. Some have taken early retirement, worried that COVID could exacerbate their chronic conditions, or vice versa; others have sought employment with better hours and pay, or left the profession entirely to salvage their mental health. A wave of illness this winter will pare down forces further, especially as the CDC backs off its recommendations for health-care workers to mask. At UAB Hospital, in Birmingham, Alabama, “we’ve struggled to have enough people to work,” says Sarah Nafziger, an emergency physician and the medical director for employee health. “And once we get them here, we have a hard time getting them to stay.”

    Read: The strongest sign that Americans should worry about flu this winter

    Clinical-laboratory staff at Deaconess Hospital, in Indiana, who are responsible for testing patient samples, are feeling similar strain, says April Abbott, the institution’s microbiology director. Abbott’s team has spent most of the past month below usual minimum-staffing levels, and has had to cut some duties and services to compensate, even after calling in reinforcements from other, already shorthanded parts of the lab. “We’re already at this threshold of barely making it,” Abbott told me. Symptoms of burnout have surged as well, while health workers continue to clock long hours, sometimes amid verbal abuse, physical attacks, and death threats. Infrastructure is especially fragile in America’s rural regions, which have suffered hospital closures and an especially large exodus of health workers. In Madison County, Montana, where real-estate values have risen, “the average nurse cannot afford a house,” says Margaret Bortko, a nurse practitioner and the region’s health officer and medical director. When help and facilities aren’t available, the outcome is straightforward, says Janice Probst, a rural-health researcher at the University of South Carolina: “You will have more deaths.”

    In health departments, too, the workforce is threadbare. As local leaders tackle multiple infectious diseases at once, “it’s becoming a zero-sum game,” says Maria Sundaram, an epidemiologist at the Marshfield Clinic Research Institute. “With limited resources, do they go to monkeypox? To polio? To COVID-19? To influenza? We have to choose.” Mati Hlatshwayo Davis, the director of health in St. Louis, told me that her department has shrunk to a quarter of the size it was five years ago. “I have staff doing the jobs of three to five people,” she said. “We are in absolute crisis.” Staff have left to take positions as Amazon drivers, who “make so much more per hour.” Looking across her state, Hlatshwayo Davis keeps watching health directors “resign, resign, resign.” Despite all that she has poured into her job, or perhaps because of it, “I can’t guarantee I won’t be one of those losses too.”

    This winter is unlikely to be an encore of the pandemic’s worst days. Thanks to the growing roster of tools we now have to combat the coronavirus—among them, effective vaccines and antivirals—infected people are less often getting seriously sick; even long COVID seems to be at least a bit scarcer among people who are up-to-date on their shots. But considering how well our shots and treatments work, the plateau of suffering at which we’ve arrived is bizarrely, unacceptably high. More than a year has passed since the daily COVID death toll was around 200; nearly twice that number—roughly three times the daily toll during a moderate flu season—now seems to be a norm.

    Part of the problem remains the nation’s failed approach to vaccines, says Avnika Amin, a vaccine epidemiologist at Emory University: The government has repeatedly championed shots as a “be-all and end-all” strategy, while failing to rally sufficient uptake. Boosting is one of the few anti-COVID measures still promoted, yet the U.S. remains among the least-vaccinated high-income countries; interest in every dose that’s followed the primary series has been paltry at best. Even with the allure of the newly reformulated COVID shot, “I’m not really getting a good sense that people are busting down the doors,” says Michael Dulitz, a health worker in Grand Forks, North Dakota. Nor can vaccines hold the line against the virus alone. Even if everyone got every shot they were eligible for, Amin told me, “it wouldn’t make COVID go away.”

    Read: America created its own booster problems

    The ongoing dry-up of emergency funds has also made the many tools of disease prevention and monitoring more difficult to access. Free at-home tests are no longer being shipped out en masse; asymptomatic testing is becoming less available; and vaccines and treatments are shifting to the private sector, putting them out of reach for many who live in poor regions or who are uninsured and can least afford to fall ill.

    It doesn’t help, either, that the country’s level of preparedness lays out as a patchwork. People who vaccinate and mask tend to cluster, Amin told me, which means that not all American experiences of winter will be the same. Less prominent, less privileged parts of the country will quietly bear the brunt of outbreaks. “The biggest worry is the burden becoming unnoticed,” Venkatramanan told me. Without data, policies can’t change; the nation can’t react. “It’s like flying without altitude or speed sensors. You’re looking out the window and trying to guess.”

    There’s an alternative winter the country might envision—one unencumbered by the policy backslides the U.S. has made in recent months, and one in which Americans acknowledge that COVID remains not just “a problem” but a crisis worth responding to.

    In that version of reality, far more people would be up-to-date on their vaccines. The most vulnerable in society would be the most protected. Ventilation systems would hum in buildings across the country. Workers would have access to ample sick leave. Health-care systems would have excesses of protective gear, and local health departments wouldn’t want for funds. Masks would come out in times of high transmission, especially in schools, pharmacies, government buildings, and essential businesses; free tests, boosters, and treatments would be available to all. No one would be asked to return to work while sick—not just with COVID but with any transmissible disease. SARS-CoV-2 infections would not disappear, but they would remain at more manageable levels; cases of flu and other cold-weather sicknesses that travel through the air would follow suit. Surveillance systems would whir in every state and territory, ready to detect the next threat. Leaders might even set policies that choreograph, rather than simply capitulate to, how Americans behave.

    We won’t be getting that winter this year, or likely any year soon. Many policies have already reverted to their 2019 status quo; by other metrics, the nation’s well-being even seems to have regressed. Life expectancy in the U.S. has fallen, especially among Native Americans and Alaskan Natives. Institutions of health are beleaguered; community-outreach efforts have been pruned.

    The pandemic has also prompted a deterioration of trust in several mainstays of public health. In many parts of the country, there’s worry that the vaccine hesitancy around COVID has “spread its tentacles into other diseases,” Hobbs told me, keeping parents from bringing their kids in for flu shots and other routine vaccines. Mississippi, once known for its stellar rate of immunizing children, now consistently ranks among those with the fewest young people vaccinated against COVID. “The one thing we do well is vaccinate children,” Hobbs said. That the coronavirus has reversed the trend “has astounded me.” In Montana, sweeping political changes, including legislation that bans employers from requiring vaccines of any kind, have made health-care settings less safe. Fewer than half of Madison County’s residents have received even their primary series of COVID shots, and “now a nurse can turn down the Hepatitis B series,” Bortko told me. Health workers, too, feel more imperiled than before. Since the start of the pandemic, Bortko’s own patients of 30 years, “who trusted me with their lives,” have pivoted to “yelling at us about vaccination concerns and mask mandates and quarantining and their freedoms,” she told me. “We have become public enemy No. 1.”

    Read: The pandemic’s soft closing

    At the same time, many people with chronic and debilitating conditions are more vulnerable than they were before the pandemic began. The policies that protected them during the pandemic’s height are gone—and yet SARS-CoV-2 is still here, adding to the dangers they face. The losses have been written off, Bortko told me: Cases of long COVID in Madison County have been dismissed as products of “risk factors” that don’t apply to others; deaths, too, have been met with a shrug of “Oh, they were old; they were unhealthy.” If, this winter, COVID sickens or kills more people who are older, more people who are immunocompromised, more people of color, more essential and low-income workers, more people in rural communities, “there will be no press coverage,” Hlatshwayo Davis said. Americans already expect that members of these groups will die.

    It’s not too late to change course. The winter’s path has not been set: Many Americans are still signing up for fall flu and COVID shots; we may luck out on the viral evolution front, too, and still be dealing largely with members of the Omicron clan for the next few months. But neither immunity nor a slowdown in variant emergence is a guarantee. What we can count on is the malleability of human behavior—what will help set the trajectory of this winter, and others to come. The U.S. botched the pandemic’s beginning, and its middle. That doesn’t mean we have to bungle its end, whenever that truly, finally arrives.

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    Katherine J. Wu

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  • Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

    Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

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    Kira Stoops lives in Bozeman, Montana—a beautiful mountain town where it sometimes feels like everyone regularly goes on 50-mile runs. Stoops, however, can’t walk around her own block on most days. To stand for more than a few minutes, she needs a wheeled walker. She reacts so badly to most foods that her diet consists of just 12 ingredients. Her “brain fog” usually lifts for a mere two hours in the morning, during which she can sometimes work or, more rarely, see friends. Stoops has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). “I’m considered a moderate patient on the mild side,” she told me.

    ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion. The Institute of Medicine estimates that it affects 836,000 to 2.5 million people in the U.S. alone, but is so misunderstood and stigmatized that about 90 percent of people who have it have never been diagnosed. At best, most medical professionals know nothing about ME/CFS; at worst, they tell patients that their symptoms are psychosomatic, anxiety-induced, or simply signs of laziness. While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue.

    A wide variety of infections can cause ME/CFS, and SARS-CoV-2, the coronavirus that causes COVID-19, is no different: Many cases of long COVID are effectively ME/CFS by another name. The exact number is hard to define, but past studies have shown that 5 to 27 percent of people infected by various pathogens, including Epstein-Barr virus and the original SARS, develop ME/CFS. Even if that proportion is 10 times lower for SARS-CoV-2, the number of Americans with ME/CFS would still have doubled in the past three years. “We’re adding an immense volume of patients to an already dysfunctional and overburdened system,” Beth Pollack, a scientist at MIT who studies complex chronic illnesses, told me.

    The U.S. has so few doctors who truly understand the disease and know how to treat it that when they convened in 2018 to create a formal coalition, there were only about a dozen, and the youngest was 60. Currently, the coalition’s website lists just 21 names, of whom at least three have retired and one is dead, Linda Tannenbaum, the CEO and president of the Open Medicine Foundation, told me. These specialists are concentrated on the coasts; none work in the Midwest. American ME/CFS patients may outnumber the population of 15 individual states, but ME/CFS specialists couldn’t fill a Major League Baseball roster. Stoops, who is 39, was formally diagnosed with ME/CFS only four years ago, and began receiving proper care from two of those specialists—Lucinda Bateman of the Bateman Horne Center and David Kaufman from the Center for Complex Diseases. Bateman told me that even before the pandemic, she could see fewer than 10 percent of the patients who asked for a consultation. “When I got into those practices, it was like I got into Harvard,” Stoops told me.

    ME/CFS specialists, already overwhelmed with demand for their services, now have to decide how to best use and spread their knowledge, at a time when more patients and doctors than ever could benefit from it. Kaufman recently discharged many of the more stable ME/CFS patients in his care—Stoops among them—so that he could start seeing COVID long-haulers who “were just making the circuit of doctors and getting nowhere,” he told me. “I can’t clone myself, and this was the only other way to” make room for new patients.

    Bateman, meanwhile, is feverishly focused on educating other clinicians. The hallmark symptom of ME/CFS—post-exertional malaise, or PEM—means even light physical or mental exertion can trigger major crashes that exacerbate every other symptom. Doctors who are unfamiliar with PEM, including many now running long-COVID clinics, can unwittingly hurt their patients by encouraging them to exercise. Bateman is racing to spread that message, and better ways of treating patients, but that means she’ll have to reduce her clinic hours.

    These agonizing decisions mean that many existing ME/CFS patients are losing access to the best care they had found so far—what for Stoops meant “the difference between being stuck at home, miserable and in pain, and actually going out once or twice a day, seeing other humans, and breathing fresh air,” she told me. But painful trade-offs might be necessary to finally drag American medicine to a place where it can treat these kinds of complex, oft-neglected conditions. Kaufman is 75 and Bateman is 64. Although both of them told me they’re not retiring anytime soon, they also won’t be practicing forever. To make full use of their expertise and create more doctors like them, the medical profession must face up to decades spent dismissing illnesses such as ME/CFS—an overdue reckoning incited by long COVID. “It’s a disaster possibly wrapped up in a blessing,” Stoops told me. “The system is cracking and needs to crack.”

    Many ME/CFS specialists have a deep knowledge of the disease because they’ve experienced it firsthand. Jennifer Curtin, one of the youngest doctors in the field, has two family members with the disease, and had it herself for nine years. She improved enough to make it through medical school and residency training, which showed her that ME/CFS “just isn’t taught,” she told me. Most curricula don’t include it; most textbooks don’t mention it.

    Even if doctors learn about ME/CFS, America’s health-care system makes it almost impossible for them to actually help patients. The insurance model pushes physicians toward shorter visits; 15 minutes might feel luxurious. “My average visit length is an hour, which doesn’t include the time I spend going over the patient’s 500 to 1,700 pages of records beforehand,” Curtin said. “It’s not a very scalable kind of care.” (She works with Kaufman at the Center for Complex Diseases, which bills patients directly.) This also explains why the cohort of ME/CFS clinicians is aging out, with little young blood to refresh them. “Hospital systems want physicians to see lots of patients and they want them to follow the rules,” Kaufman said. “There’s less motivation for moving into areas of medicine that are more unknown and challenging.”

    ME/CFS is certainly challenging, not least because it’s just “one face of a many-sided problem,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me. The condition’s root causes can also lead to several distinct but interlocking illnesses, including mast cell activation syndrome, Ehlers-Danlos syndrome, fibromyalgia, dysautonomia (usually manifesting as POTS), and several autoimmune and gastrointestinal disorders. “I’m still amazed at how often patients come in with Complaint No. 1, and then I find five to seven of the other things,” Kaufman said. These syndromes collectively afflict many organ systems, which can baffle doctors who’ve specialized in just one. Many of them disproportionately affect women, and are subject to medicine’s long-standing tendency to minimize or psychologize women’s pain, Pollack told me: An average woman with Ehlers-Danlos syndrome typically spends 16 years getting a diagnosis, while a man needs only four.

    People with long COVID might have many of these conditions and not know about any—because their doctors don’t either. Like ME/CFS, they rarely feature in medical training, and it’s hard to “teach someone about all of them when they’ve never heard of any of them,” Seltzer said. Specialists like Bateman and Kaufman matter because they understand not just ME/CFS but also the connected puzzle pieces. They can look at a patient’s full array of symptoms and prioritize the ones that are most urgent or foundational. They know how to test for conditions that can be invisible to standard medical techniques: “None of my tests came back abnormal until I saw an ME/CFS doctor, and then all my tests came back abnormal,” said Hannah Davis of the Patient-Led Research Collaborative, who has had long COVID since March 2020.

    ME/CFS specialists also know how to help, in ways that are directly applicable to cases of long COVID with overlapping symptoms. ME/CFS has no cure but can be managed, often through “simple, inexpensive interventions that can be done through primary care,” Bateman told me. Over-the-counter antihistamines can help patients with inflammatory problems such as mast cell activation syndrome. Low doses of naltrexone, commonly used for addiction disorders, can help those with intense pain. A simple but rarely administered test can show if patients have orthostatic intolerance—a blood-flow problem that worsens other symptoms when people stand or sit upright. Most important, teaching patients about pacing—carefully sensing and managing your energy levels—can prevent debilitating crashes. “We don’t go to an ME/CFS clinic and walk out in remission,” Stoops told me. “You go to become stabilized. The ship has 1,000 holes, and doctors can patch one before the next explodes, keeping the whole thing afloat.”

    That’s why the prospect of losing specialists is so galling. Stoops understands why her doctors might choose to focus on education or newly diagnosed COVID long-haulers, but ME/CFS patients are “just so lost already, and to lose what little we have is a really big deal,” she said. Kaufman has offered to refer her to generalist physicians or talk to primary-care doctors on her behalf. But it won’t be the same: “Having one appointment with him is like six to eight appointments with other practitioners,” she said. He educates her about ME/CFS; with other doctors, it’s often the other way round. “I’m going to have to work much harder to receive a similar level of care.”

    At least, she will for now. The ME/CFS specialists who are shifting their focus are hoping that they can use this moment of crisis to create more resources for everyone with these diseases. In a few years, Bateman hopes, “there will be 100 times more clinicians who are prepared to manage patients, and many more people with ME/CFS who have access to care.”

    For someone who is diagnosed with ME/CFS today, the landscape already looks very different than it did just a decade ago. In 2015, the Institute of Medicine published a landmark report redefining the diagnostic criteria for the disease. In 2017, the CDC stopped recommending exercise therapy as a treatment. In 2021, Bateman and 20 other clinicians published a comprehensive guide to the condition in the journal of the Mayo Clinic. For any mainstream disease, such events—a report, a guideline revision, a review article—would be mundane. For ME/CFS, they felt momentous. And yet, “the current state of things is simply intolerable,” Julie Rehmeyer, a journalist with ME/CFS, told me. Solving the gargantuan challenge posed by complex chronic diseases demands seismic shifts in research funding, medical training, and public attitudes. “Achieving shifts like that takes something big,” Rehmeyer said. “Long COVID is big.”

    COVID long-haulers have proved beyond any reasonable doubt that acute viral infections can leave people chronically ill. Many health-care workers, political-decision makers, and influencers either know someone with long COVID or have it themselves. Even if they still don’t know about ME/CFS, their heightened awareness of post-viral illnesses is already making a difference. Mary Dimmock’s son developed ME/CFS in 2011, and before the pandemic, one doctor in 10 might take him seriously. “Now it’s the flip: Only one doctor out of 10 will be a real jerk,” Dimmock told me. “I attribute that to long COVID.”

    But being believed is the very least that ME/CFS patients deserve. They need therapeutics that target the root causes of the disease, which will require a clear understanding of those causes, which will require coordinated, well-funded research—three things ME/CFS has historically lacked. But here, too, “long COVID is going to be a catalyst,” Amy Proal, the president of the Polybio Research Foundation, told me. She is leading the Long Covid Research Initiative—a group of scientists, including ME/CFS researchers, that will use state-of-the-art techniques to see exactly how the new coronavirus causes long COVID, and rapidly push potential treatments through clinical trials. The National Institutes of Health has also committed $1.15 billion to long-COVID research, and while some advocates are concerned about how that money will be spent, Rehmeyer notes that the amount is still almost 80 times greater than the paltry $15 million spent on ME/CFS every year—less than any other disease in the NIH’s portfolio, relative to its societal burden. “Even if 90 percent is wasted, we’d be doing a lot better,” she said.

    While they wait for better treatments, patients also need the medical community to heed the lessons that they and their clinicians have learned. For example, the American Academy for Family Physicians website still wrongly recommends exercise therapy and links ME/CFS to childhood abuse. “That group of doctors is very important to these patients,” Dimmock said, “so what does that say to them about what this disease is all about?”

    Despite all evidence to the contrary, many clinicians and researchers still don’t see ME/CFS as a legitimate illness and are quick to dismiss any connection between it and long COVID. To ensure that both groups of patients get the best possible treatments, instead of advice that might harm them, ME/CFS specialists are working to disseminate their hard-won knowledge. Bateman and her colleagues have been creating educational resources for clinicians and patients, continuing-medical-education courses, and an online lecture series. Jennifer Curtin has spent two years mapping all the decisions she makes when seeing a new patient, and is converting those into a tool that other clinicians can use. As part of her new start-up, called RTHM, she’s also trying to develop better ways of testing for ME/CFS and its related syndromes, of visualizing the hefty electronic health records that chronically ill patients accumulate, and of tracking the treatments they try and their effects. “There are a lot of things that need to be fixed for this kind of care to be scalable,” Curtin told me.

    Had such shifts already occurred, the medical profession might have had more to offer COVID long-haulers beyond bewilderment and dismissal. But if the profession starts listening to the ME/CFS community now, it will stand the best chance of helping people being disabled by COVID, and of steeling itself against future epidemics. Pathogens have been chronically disabling people for the longest time, and more pandemics are inevitable. The current one could and should be the last whose long-haulers are greeted with disbelief.

    New centers that cater to ME/CFS patients are already emerging. RTHM is currently focused on COVID long-haulers but will take on some of David Kaufman’s former patients in November, and will open its waiting list to the broader ME/CFS community in December. (It is currently licensed to practice in just five states but expects to expand soon.) David Putrino, who leads a long-COVID rehabilitation clinic in Mount Sinai, is trying to raise funds for a new clinic that will treat both long COVID and ME/CFS. He credits ME/CFS patients with opening his eyes to the connection between long COVID and their condition.

    Every ME/CFS patient I’ve talked with predicted long COVID’s arrival well before most doctors or even epidemiologists started catching up. They know more about complex chronic illnesses than many of the people now treating long COVID do. Despite having a condition that saps their energy, many have spent the past few years helping long-haulers navigate what for them was well-trodden terrain: “I did barely anything but work in 2020,” Seltzer told me. Against the odds, they’ve survived. But the pandemic has created a catalytic opportunity for the odds to finally be tilted in their favor, “so that neither patients nor doctors of any complex chronic illness have to be heroes anymore,” Rehmeyer said.

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    Ed Yong

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