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  • The ‘Unthinkable’ New Reality About Bedbugs

    The ‘Unthinkable’ New Reality About Bedbugs


    This article was originally published by Knowable Magazine.

    The stories have become horribly familiar: houses so overrun by bedbugs that the bloodsucking insects pile an inch deep on the floor. An airport shutting down gates for deep cleaning after the parasites were spotted. Fear and loathing during Fashion Week 2023 in Paris, with bedbug-detection dogs working overtime when the insects turned up in movie theaters and trains.

    For reasons that almost certainly have to do with global travel and poor pest management, bedbugs have resurfaced with a vengeance in 50 countries since the late 1990s. But recently, the resurgence has brought an added twist: When exterminators swarm out to hunt these pests, they might encounter not just one but two different kinds of bugs.

    Besides the common bedbug, Cimex lectularius, which has always made its home in the Northern Hemisphere, there are now sightings of its relative, the tropical bedbug, Cimex hemipterus, in temperate regions. Historically, this species didn’t venture that far from the equator, write the entomologists Stephen Doggett and Chow-Yang Lee in the 2023 issue of the Annual Review of Entomology. But in recent years, tropical bedbugs have turned up in the United States, Sweden, Italy, Norway, Finland, China, Japan, France, Central Europe, Spain—“even in Russia, which would have once been unthinkable,” says Lee, a professor of urban entomology at UC Riverside.

    Like the common bedbug, the tropical version has grown resistant to many standard pesticides—to the point where some experts say they wouldn’t bother spraying should their own home become infested. It has been estimated that the fight against bedbugs is costing the world economy billions annually.

    This all adds up to a sobering new reality: For many people, bedbugs are becoming a fact of life again, much as they used to be throughout humanity’s history. But as scientists race to find new strategies to combat these pests—everything from microfabricated surfaces that entrap the insects to fungal spores that invade and kill them—they also learn more about the often-bizarre biology of bedbugs, which might one day reveal the parasite’s Achilles’ heel.

    Genomics shows that bedbugs emerged 115 million years ago, before the dinosaurs went extinct. When the first humans appeared and moved into caves, the ancestors of today’s bedbugs were ready and waiting. It is thought that these insects initially fed on bats. But bats reduce their blood circulation during their sleeplike torpor state, likely making it harder for the bloodsucking parasite to feed. Presumably, then, at least some bedbug ancestors happily switched to humans.

    Since then, the bugs have followed humankind across the globe, tagging along on ancient shipping routes and modern plane rides. Preserved bedbugs were found in the quarters used by workers in ancient Egypt some 3,550 years ago.

    Bedbugs can survive a year or more without feeding. About as big as flattened apple seeds, they squeeze into tiny cracks in walls or in the joints of bed frames during the day; they crawl out at night, attracted by a sleeper’s exhaled carbon dioxide and body warmth. At the turn of the 20th century, an estimated 75 percent of homes in the U.K. contained bedbugs. Bizarre prescriptions for remedies have circulated down the years, including a recipe for “cat juice” in a pest-control guide from 1725. The formula called for suffocating and skinning a cat, roasting it on a spit, mixing the drippings with egg yolk and oil, and smearing the concoction into crevices around the bed.

    DDT (dichlorodiphenyltrichloroethane) and the pesticides that followed helped bring a few decades’ worth of respite from the 1940s to the 1990s—enough that most people forgot about the insects and didn’t recognize them when they reappeared around the turn of the millennium.

    Doggett and Lee hypothesize that the bloodsuckers’ comeback started in areas of Africa, where common and tropical bedbugs naturally coexist, and where DDT (and, later, other insecticides) were sprayed in bedrooms against malaria-carrying mosquitoes. Initially, this would have killed the majority of bed bugs too. But some resistant ones survived and multiplied.

    Bedbugs suck up more than three times their body weight in blood. As they do, they also take in any viruses or other infectious agents that might circulate in the body of their prey, such as hepatitis B and HIV. They have never been found to transmit these pathogens in the wild—but this doesn’t mean that the parasites are benign. “Bedbugs produce some of the most irritating bites of all insects,” says Doggett, a medical entomologist at Westmead Hospital, in Sydney, Australia. “If I receive one, I don’t sleep, as I react so badly. If there are lots of bedbugs, the bites are horrendous.” There have been cases where people have accidentally set mattresses on fire in desperate attempts to chase off the bugs, sometimes burning down their home in the process.

    Humans aren’t the only ones to react so strongly. The Cimicidae family, to which bedbugs belong, comprises about 100 species. Almost all prefer to bite nonhuman animals, such as birds. Biologists have observed cliff-swallow chicks jumping to their death from heavily infested nests rather than enduring the bites.

    Infestations in which hundreds of bugs may descend upon a bed at night can cause a human sleeper to become anemic. Victims can even develop insomnia, anxiety, and depression. They may find themselves shunned by friends, blacklisted by landlords, and—being sleep-deprived—more prone to car accidents and problems at work.

    Indirectly, at least, bedbugs may cause human deaths. Doggett has noticed that some people in Africa are giving up the bed nets that protect them from mosquitoes and life-threatening malaria infections because bedbugs hide in them. “In some regions, malaria cases are on the rise, and we think that bedbugs are contributing to this,” he says.

    By now, bedbug resistance has been reported against most of the prevalent insecticides, including organochlorines, organophosphates, carbamates, neonicotinoids, aryl pyrroles, and pyrethroids. Some of today’s bedbug strains tolerate pesticide doses that are many thousands of times higher than those that used to consistently kill them. Resistant bedbugs have either developed gene mutations that prevent pesticides from binding effectively to their cells or they produce enzymes that quickly break down the toxins in their body. Others are growing thicker exoskeletons that the poisons can’t easily penetrate.

    An investigation some years back into a hospital in Cleveland discovered that new bedbugs showed up in the facility every 2.2 days on average. And tropical bedbugs seem just as happy in our modern indoors as the common variety does. “Heating and air-conditioning have made our living environments more standardized,” Lee says. “If a tropical bedbug happens to be introduced to a house in Norway, it can now survive there even in winter.”

    Currently, the only bedbug sprays that still tend to work are certain combination products that blend different classes of pesticides. But it’s only a matter of time before these, too, will fail, experts say: Reports of resistance have already been documented. More and more, exterminators incorporate nonchemical approaches such as heat treatments, in which trained professionals warm up rooms to more than 120 degrees Fahrenheit for several hours. They sometimes sprinkle a floury dust called diatomaceous earth around rooms, which clings to those bugs that hide from the heat in wall cracks or under mattresses. The dust abrades the insect’s exoskeleton, dehydrating it to death.

    Such measures—combined with more awareness—have helped plateau, or even partly reverse, the spread of bedbugs in some places. In New York City, for example, bedbug complaints fell by half from 2014 to 2020, from 875 complaints a month to 440, on average. To be sure, that’s still 14 complaints a day.

    But although effective, nonchemical methods tend to work slowly. “It’s very common that an elimination takes one to two or even three months,” says Changlu Wang, an entomologist at Rutgers University. Meanwhile, residents must keep living in their infested quarters.

    Nonchemical measures may also be expensive, because they can require laborious steps such as sealing cracks in walls and physically removing bugs by vacuuming. Although a quick (but increasingly futile) spraying of pesticides may cost a few hundred dollars, mechanical eradications can run as high as several thousand dollars. This puts effective bedbug control out of many people’s reach, making them vulnerable to entrenched infestations that can spread through communities.

    The result is that the epidemic has shifted to the poor, says Michael Levy, an epidemiologist at the University of Pennsylvania: “While many cities now have bedbug policies, very few provide much assistance to those who cannot afford treatment.” A 2016 report on 2,372 low-income apartment units in 43 buildings across four New Jersey cities found that 3.8 percent to 29.5 percent were infested with bedbugs.

    The northward spread of tropical bedbugs complicates matters further. Although the two species look alike, tropical bedbugs have more hair on their legs, which allows them to climb out of many of the smooth-walled traps that are used to monitor homes. This means that infestations could stay undetected longer, Lee says. And the larger a population grows, the harder it is to get rid of.

    To fight back, researchers find inspiration in traditional wisdom. In the Balkan region, homeowners used to spread the leaves of the bean plant Phaseolus vulgaris L. around their beds. The leaves possess tiny hooks on their surface that trap the bugs. Now scientists at UC Irvine are developing a “physical insecticide” in the shape of a synthetic material sporting sharply curved microstructures that mimic those on the bean leaves. These irreversibly impale the feet of the bedbugs, Catherine Loudon, a biology professor at UC Irvine, wrote in a 2022 paper in Integrative and Comparative Biology: “The bugs are unable to get away once they are pierced.”

    Other recent approaches are also rooted in nature. Scientists have found, for example, that essential oils can repel bedbugs. However, the effect is mostly temporary. Certain fungal spores, on the other hand, work permanently. “Basically, the spores go into the body of the bedbug and kill it,” Wang says. At least one product containing the insect-killing fungus Beauveria bassiana is now available in the United States.

    Researchers continue to be fascinated by the biology of this insect, particularly its sex life. Although female bedbugs possess a normal set of genitalia, the males typically mate by stabbing a needle-sharp penis straight into the female’s abdomen to inject sperm. They usually do this just after a female bedbug has fed, because this makes her too engorged to protect herself.

    Having to cope with these frequent injuries has led female bedbugs to evolve the only immunity organ in the insect kingdom, says Klaus Reinhardt, a zoologist at the Dresden University of Technology, in Germany. They have also evolved a remarkably elastic material that covers the parts of their abdomen most likely to be stabbed. “It resembles one of those self-sealing injection bottles that close up again when you pull the needle,” Reinhardt says.

    Although this knowledge will likely do little to combat these pests directly, answering another question might: Why don’t bedbugs stay on their host’s body, as lice do? As it turns out, bedbugs don’t like our smell. Certain lipids in human skin repel the bugs, according to a 2021 study in Scientific Reports. This makes them retreat to daytime hiding places, marking their trails with pheromones.

    Already, exterminators try to trap bedbugs with fake trail markings. And one day, we might deter the insects from spreading by treating suitcases with smells they despise.

    But for now, caution remains the best approach. Experts advise that travelers check accommodations for bedbug-defecation stains: on mattress seams and furniture, and behind headboards. (The insects poop as frequently as a few dozen times after every blood meal, often right next to their victims.) Suitcases should be kept in the hotel bathtub or wrapped in a plastic bag. Upon arrival back home, the luggage’s contents should be put into the clothes dryer for at least 30 minutes at the highest setting, or into a very cold freezer for several days.

    If bedbugs do invade a home, “the biggest mistake is to try and get rid of them on one’s own,” Doggett says. “The average person doesn’t appreciate how challenging it is to control bedbugs and will use supermarket insecticides that are labeled for bedbugs but don’t work. The infestation will spread, and the costs escalate.”



    Ute Eberle

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  • What Fatigue Really Means

    What Fatigue Really Means

    Alexis Misko’s health has improved enough that, once a month, she can leave her house for a few hours. First, she needs to build up her energy by lying in a dark room for the better part of two days, doing little more than listening to audiobooks. Then she needs a driver, a quiet destination where she can lie down, and days of rest to recover afterward. The brief outdoor joy “never quite feels like enough,” she told me, but it’s so much more than what she managed in her first year of long COVID, when she couldn’t sit upright for more than an hour or stand for more than 10 minutes. Now, at least, she can watch TV on the same day she takes a shower.

    In her previous life, she pulled all-nighters in graduate school and rough shifts at her hospital as an occupational therapist; she went for long runs and sagged after long flights. None of that compares with what she has endured since getting COVID-19 almost three years ago. The fatigue she now feels is “like a complete depletion of the essence of who you are, of your life force,” she told me in an email.

    Fatigue is among the most common and most disabling of long COVID’s symptoms, and a signature of similar chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS). But in these diseases, fatigue is so distinct from everyday weariness that most of the people I have talked with were unprepared for how severe, multifaceted, and persistent it can be.

    For a start, this fatigue isn’t really a single symptom; it has many faces. It can weigh the body down: Lisa Geiszler likens it to “wearing a lead exoskeleton on a planet with extremely high gravity, while being riddled with severe arthritis.” It can rev the body up: Many fatigued people feel “wired and tired,” paradoxically in fight-or-flight mode despite being utterly depleted. It can be cognitive: Thoughts become sluggish, incoherent, and sometimes painful—like “there’s steel wool stuck in my frontal lobe,” Gwynn Dujardin, a literary historian with ME, told me.

    Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” Misko said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet? Only a quarter of long-haulers have symptoms that severely limit their daily activities, but even those with “moderate” cases are profoundly limited. Julia Moore Vogel, a program director at Scripps Research, still works, but washing her hair, she told me, leaves her as exhausted as the long-distance runs she used to do.

    And though normal fatigue is temporary and amenable to agency—even after a marathon, you can will yourself into a shower, and you’ll feel better after sleeping—rest often fails to cure the fatigue of long COVID or ME/CFS. “I wake up fatigued,” Letícia Soares, who has long COVID, told me.

    Between long COVID, ME/CFS, and other energy-limiting chronic illnesses, millions of people in the U.S. alone experience debilitating fatigue. But American society tends to equate inactivity with immorality, and productivity with worth. Faced with a condition that simply doesn’t allow people to move—even one whose deficits can be measured and explained—many doctors and loved ones default to disbelief. When Soares tells others about her illness, they usually say, “Oh yeah, I’m tired too.” When she was bedbound for days, people told her, “I need a weekend like that.” Soares’s problems are very real, and although researchers have started to figure out why so many people like her are suffering, they don’t yet know how to stop it.


    Fatigue creates a background hum of disability, but it can be punctuated by worse percussive episodes that strip long-haulers of even the small amounts of energy they normally have.

    Daria Oller is a physiotherapist and athletic trainer, so when she got COVID in March 2020, she naturally tried exercising her way to better health. And she couldn’t understand why, after just short runs, her fatigue, brain fog, chest pain, and other symptoms would flare up dramatically—to the point where she could barely move or speak. These crashes contradicted everything she had learned during her training. Only after talking with physiotherapists with ME/CFS did she realize that this phenomenon has a name: post-exertional malaise.

    Post-exertional malaise, or PEM, is the defining trait of ME/CFS and a common feature of long COVID. It is often portrayed as an extreme form of fatigue, but it is more correctly understood as a physiological state in which all existing symptoms burn more fiercely and new ones ignite. Beyond fatigue, people who get PEM might also feel intense radiant pain, an inflammatory burning feeling, or gastrointestinal and cognitive problems: “You feel poisoned, flu-ish, concussed,” Misko said. And where fatigue usually sets in right after exertion, PEM might strike hours or days later, and with disproportionate ferocity. Even gentle physical or mental effort might lay people out for days, weeks, months. Visiting a doctor can precipitate a crash, and so can filling out applications for disability benefits—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility: Most people experience the desperation of being unable to move only in nightmares, Dujardin told me. “PEM is like that, but much more painful.”

    Medical professionals generally don’t learn about PEM during their training. Many people doubt its existence because it is so unlike anything that healthy people endure. Mary Dimmock told me that she understood what it meant only when she saw her son, Matthew, who has ME/CFS, crash in front of her eyes. “He just melted,” Dimmock said. But most people never see such damage because PEM hides those in the midst of it from public view. And because it usually occurs after a delay, people who experience PEM might appear well to friends and colleagues who then don’t witness the exorbitant price they later pay.

    That price is both real and measurable. In cardiopulmonary exercise tests, or CPETs, patients use treadmills or exercise bikes while doctors record their oxygen consumption, blood pressure, and heart rate. Betsy Keller, an exercise physiologist at Ithaca College, told me that most people can repeat their performance if retested one day later, even if they have heart disease or are deconditioned by inactivity. People who get PEM cannot. Their results are so different the second time around that when Keller first tested someone with ME/CFS in 2003, “I told my colleagues that our equipment was out of calibration,” she said. But she and others have seen the same pattern in hundreds of ME/CFS and long-COVID patients—“objective findings that can’t be explained by anything psychological,” David Systrom, a pulmonologist at Brigham and Women’s Hospital, told me. “Many patients are told it’s all in their head, but this belies that in spades.” Still, many insurers refuse to pay for a second test, and many patients cannot do two CPETs (or even one) without seriously risking their health. And “20 years later, I still have physicians who refute and ignore the objective data,” Keller said. (Some long-COVID studies have ignored PEM entirely, or bundled it together with fatigue.)

    Oller thinks this dismissal arises because PEM inverts the dogma that exercise is good for you—an adage that, for most other illnesses, is correct. “It’s not easy to change what you’ve been doing your whole career, even when I tell someone that they might be harming their patients,” she said. Indeed, many long-haulers get worse because they don’t get enough rest in their first weeks of illness, or try to exercise through their symptoms on doctors’ orders.

    People with PEM are also frequently misdiagnosed. They’re told that they’re deconditioned from being too sedentary, when their inactivity is the result of frequent crashes, not the cause. They’re told that they’re depressed and unmotivated, when they are usually desperate to move and either physically incapable of doing so or using restraint to avoid crashing. Oller is part of a support group of 1,500 endurance athletes with long COVID who are well used to running, swimming, and biking through pain and tiredness. “Why would we all just stop?” she asked.


    Some patients with energy-limiting illnesses argue that the names of their diseases and symptoms make them easier to discredit. Fatigue invites people to minimize severe depletion as everyday tiredness. Chronic fatigue syndrome collapses a wide-ranging disabling condition into a single symptom that is easy to trivialize. These complaints are valid, but the problem runs deeper than any name.

    Dujardin, the English professor who is (very slowly) writing a cultural history of fatigue, thinks that our concept of it has been impoverished by centuries of reductionism. As the study of medicine slowly fractured into anatomical specialties, it lost an overarching sense of the systems that contribute to human energy, or its absence. The concept of energy was (and still is) central to animistic philosophies, and though once core to the Western world, too, it is now culturally associated with quackery and pseudoscience. “There are vials of ‘energy boosters’ by every cash register in the U.S.,” Dujardin said, but when the NIH convened a conference on the biology of fatigue in 2021, “specialists kept observing that no standard definition exists for fatigue, and everyone was working from different ideas of human energy.” These terms have become so unhelpfully unspecific that our concept of “fatigue” can encompass a wide array of states including PEM and idleness, and can be heavily influenced by social forces—in particular the desire to exploit the energy of others.

    As the historian Emily K. Abel notes in Sick and Tired: An Intimate History of Fatigue, many studies of everyday fatigue at the turn of the 20th century focused on the weariness of manual laborers, and were done to find ways to make those workers more productive. During this period, fatigue was recast from a physiological limit that employers must work around into a psychological failure that individuals must work against. “Present-day society stigmatizes those who don’t Push through; keep at it; show grit,” Dujardin said, and for the sin of subverting those norms, long-haulers “are not just disbelieved but treated openly with contempt.” Fatigue is “profoundly anti-capitalistic,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me.

    Energy-limiting illnesses also disproportionately affect women, who have long been portrayed as prone to idleness. Dujardin notes that in Western epics, women such as Circe and Dido were perceived harshly for averting questing heroes such as Odysseus and Aeneas with the temptation of rest. Later, the onset of industrialization turned women instead into emblems of homebound idleness while men labored in public. As shirking work became a moral failure, it also remained a feminine one.

    These attitudes were evident in the ways two successive U.S. presidents dealt with COVID. Donald Trump, who always evinced a caricature of masculine strength and chastised rivals for being “low energy,” framed his recovery from the coronavirus as an act of domination. Joe Biden was less bombastic, but he still conspicuously assured the public that he was working through his COVID infection while his administration prioritized policies that got people back to work. Neither man spoke of the possibility of disabling fatigue or the need for rest.

    Medicine, too, absorbs society’s stigmas around fatigue, even in selecting those who get to join its ranks. Its famously grueling training programs exclude (among others) most people with energy-limiting illnesses, while valorizing the ability to function when severely depleted. This, together with the tendency to psychologize women’s pain, helps to explain why so many long-haulers—even those with medical qualifications, like Misko and Oller—are treated so badly by the professionals they see for care. When Dujardin first sought medical help for her ME/CFS symptoms, the same doctor who had treated her well for a decade suddenly became stiff and suspicious, she told me, reduced all of her detailed descriptions to “tiredness,” and left the room without offering diagnosis or treatment. There is so much cultural pressure to never stop that many people can’t accept that their patients or peers might be biologically forced to do so.


    No grand unified theory explains everything about long COVID and ME/CFS, but neither are these diseases total mysteries. In fact, plenty of evidence exists for at least two pathways that explain why people with these conditions could be so limited in energy.

    First, most people with energy-limiting chronic illnesses have problems with their autonomic nervous system, which governs heartbeat, breathing, sleep, hormone release, and other bodily functions that we don’t consciously control. When this system is disrupted—a condition called “dysautonomia”—hormones such as adrenaline might be released at inappropriate moments, leading to the wired-but-tired feeling. People might suddenly feel sleepy, as if they’re shutting down. Blood vessels might not expand in moments of need, depriving active muscles and organs of oxygen and fuel; those organs might include the brain, leading to cognitive dysfunction such as brain fog.

    Second, many people with long COVID and ME/CFS have problems with generating energy. When viruses invade the body, the immune system counterattacks, triggering a state of inflammation. Both infection and inflammation can damage the mitochondria—the bean-shaped batteries that power our cells. Malfunctioning mitochondria produce violent chemicals called “reactive oxygen species” (ROS) that inflict even more cellular damage. Inflammation also triggers a metabolic switch toward fast but inefficient ways of making energy, depleting cells of fuel and riddling them with lactic acid. These changes collectively explain the pervasive, dead-battery flavor of fatigue, as “the body struggles to generate energy,” Bindu Paul, a pharmacologist and neuroscientist at Johns Hopkins, told me. They might also explain the burning, poisoned feelings that patients experience, as their cells fill with lactic acid and ROS.

    These two pathways—autonomic and metabolic—might also account for PEM. Normally, the autonomic nervous system smoothly dials up to an intense fight-and-flight mode and down to a calmer rest-and-digest one. But “in dysautonomia, the dial becomes a switch,” David Putrino, a neuroscientist and rehabilitation specialist at Mount Sinai, told me. “You go from sitting to standing and your body thinks: Oh, are we going hunting? You stop, and your body shuts down.” The exhaustion of these dramatic, unstable flip-flops is made worse by the ongoing metabolic maelstrom. Damaged mitochondria, destructive ROS, inefficient metabolism, and chronic inflammation all compound one another in a vicious cycle that, if it becomes sufficiently intense, could manifest as a PEM crash. “No one is absolutely certain about what causes PEM,” Seltzer told me, but it makes sense that “you have this big metabolic shift and your nervous system can’t get back on an even keel.” And if people push through, deepening the metabolic demands on a body that already can’t meet them, the cycle can spin even faster, “leading to progressive disability,” Putrino said.

    Other factors might also be at play. Compared with healthy people, those with long COVID and ME/CFS have differences in the size, structure, or function of brain regions including the thalamus, which relays motor signals and regulates consciousness, and the basal ganglia, which controls movement and has been implicated in fatigue. Long-haulers also have problems with blood vessels, red blood cells, and clotting, all of which might further staunch their flows of blood, oxygen, and nutrients. “I’ve tested so many of these people over the years, and we see over and over again that when the systems start to fail, they all fail in the same way,” Keller said. Together, these woes explain why long COVID and ME/CFS have such bewilderingly varied symptoms. That diversity fuels disbelief—how could one disease cause all of this?—but it’s exactly what you’d expect if things as fundamental as metabolism go awry.

    Long-haulers might not know the biochemical specifics of their symptoms, but they are uncannily good at capturing those underpinnings through metaphor. People experiencing autonomic blood-flow problems might complain about feeling “drained,” and that’s literally happening: In POTS, a form of dysautonomia, blood pools in the lower body when people stand. People experiencing metabolic problems often use dead-battery analogies, and indeed their cellular batteries—the mitochondria—are being damaged: “It really feels like something is going wrong at the cellular level,” Oller told me. Attentive doctors can find important clues about the basis of their patients’ illness hiding amid descriptions that are often billed as “exaggerated or melodramatic,” Dujardin said.


    Some COVID long-haulers do recover. But several studies have found that, so far, most don’t fully return to their previous baseline, and many who become severely ill stay that way. This pool of persistently sick people is now mired in the same neglect that has long plagued those who suffer from illnesses such as ME/CFS. Research into such conditions are grossly underfunded, so no cures exist. Very few doctors in the U.S. know how to treat these conditions, and many are nearing retirement, so patients struggle to find care. Long-COVID clinics exist but vary in quality: Some know nothing about other energy-limiting illnesses, and still prescribe potentially harmful and officially discouraged treatments such as exercise. Clinicians who better understand these illnesses know that caution is crucial. When Putrino works with long-haulers to recondition their autonomic nervous system, he always starts as gently as possible to avoid triggering PEM. Such work “isn’t easy and isn’t fast,” he said, and it usually means stabilizing people instead of curing them.

    Stability can be life-changing, especially when it involves changes that patients can keep up at home. Over-the-counter supplements such as coenzyme Q10, which is used by mitochondria to generate energy and is depleted in ME/CFS patients, can reduce fatigue. Anti-inflammatory medications such as low-dose naltrexone may have some promise. Sleep hygiene may not cure fatigue, but certainly makes it less debilitating. Dietary changes can help, but the right ones might be counterintuitive: High-fiber foods take more energy to digest, and some long-haulers get PEM episodes after eating meals that seem healthy. And the most important part of this portfolio is “pacing”—a strategy for carefully keeping your activity levels beneath the threshold that causes debilitating crashes.

    Pacing is more challenging than it sounds. Practitioners can’t rely on fixed routines; instead, they must learn to gauge their fluctuating energy levels in real time, while becoming acutely aware of their PEM triggers. Some turn to wearable technology such as heart-rate monitors, and more than 30,000 are testing a patient-designed app called Visible to help spot patterns in their illness. Such data are useful, but the difference between rest and PEM might be just 10 or 20 extra heartbeats a minute—a narrow crevice into which long-haulers must squeeze their life. Doing so can be frustrating, because pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate. Its physical benefits come at mental costs: Walks, workouts, socializing, and “all the things I’d do for mental health before were huge energy sinks,” Vogel told me. And without financial stability or social support, many long-haulers must work, parent, and care for themselves even knowing that they’ll suffer later. “It’s impossible not to overdo it, because life is life,” Vogel said.

    “Our society is not set up for pacing,” Oller added. Long-haulers must resist the enormous cultural pressure to prove their worth by pushing as hard as they can. They must tolerate being chastised for trying to avert a crash, and being disbelieved if they fail. “One of the most insulting things people can say is ‘Fight your illness,’” Misko said. That would be much easier for her. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.” For her and many others, rest has become both a medical necessity and a radical act of defiance—one that, in itself, is exhausting.

    Ed Yong

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