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Robert F. Kennedy Jr. is finally getting his wish of sucker punching the federal health agencies. This week, Kennedy began the process of firing some 10,000 employees working under the Health and Human Services umbrella. Even before he took office, Kennedy warned health officials that they should pack their bags, and on Tuesday, he defended the cuts: “What we’ve been doing isn’t working,” Kennedy posted on X. He is focused on “realigning HHS with its core mission: to stop the chronic disease epidemic and Make America Healthy Again.” But instead of improving how the federal health bureaucracy works, RFK Jr. is throwing his agencies into chaos.

The Trump administration hasn’t released details about which offices specifically were targeted, but the cuts seem to be so deep and indiscriminate that they are going to hamstring Kennedy’s own stated priorities. Kennedy has made clear that he’s singularly focused on reducing rates of chronic disease in America, but the health secretary has reportedly laid off officials in the CDC’s office tasked with that same goal. While cigarette smoking remains a leading cause of chronic disease, the top FDA official in charge of regulating tobacco is now on administrative leave, and everyone working for the CDC office that monitors tobacco use has been fired, according to the former CDC director Tom Frieden. Despite Kennedy’s promises to establish a culture of “radical transparency” at the federal agencies, he also appears to have fired the employees whom journalists and the greater public rely on to provide essential updates about the government’s actions. (In a statement, a spokesperson for HHS said that the personnel cuts were focused on “redundant or unnecessary administrative positions.”)

Kennedy, an anti-vaccine advocate, seems to have targeted more than just the most pro-vaccine voices in the government. During his confirmation hearings, Kennedy said he would “empower the scientists” as health secretary, but here are just a few of the M.D. and Ph.D.s who were reportedly targeted yesterday: the head of the FDA’s Office of New Drugs, the head of the National Institute of Allergy and Infectious Diseases, the director of the CDC’s National Center for HIV, Viral Hepatitis, STD, and TB Prevention, the head of CDC’s Center for Forecasting and Outbreak Analytics, the director of the National Institute of Child Health and Human Development, the director of the NIH’s Division of Microbiology and Infectious Diseases, the director of the National Institute of Nursing Research, and the director of the National Institute on Minority Health and Health Disparities.

No plan—not his MAHA agenda, not efficiency, nothing—can realistically explain cuts like these. Instead, the mass firings don’t seem to be a means to an end on the way to overhauling American health. They are an end in themselves.

It’ll take months, if not years, to fully appreciate the effect that the cuts will have on America’s scientific enterprise. The decimation at the FDA is particularly galling. Several of the agency’s top leaders charged with reviewing and approving innovative new treatments have been ushered to the exit. This is likely to lead to slower development of advancements in biomedical science; although the FDA doesn’t fund biomedical research, its leaders play a crucial role in advising pharmaceutical companies on how to conduct research and ultimately get their breakthroughs approved. America was just beginning to reap the benefits of these efforts. There are now gene therapies that can treat genetic blindness. Young children who previously would have been condemned to certain death at the hands of a rare disease, such as severe spinal muscular atrophy, now have a chance at life. The government invested in mRNA technology for decades before it was leveraged to create vaccines that saved us from a once-in-century pandemic.

One particularly dispiriting departure is that of Peter Marks, the longtime leader of the FDA’s Center for Biologics Evaluation and Research. I’d guess that, unlike me, you didn’t spend the early pandemic binge-watching scientific meetings where vaccine policy was debated. Marks was impossible to miss—a bespectacled man speaking from a bunkerlike basement, a painting of a polar bear serving tea behind him. He gets a hefty portion of credit for Trump’s Operation Warp Speed, the effort to turbocharge the development of COVID vaccines, and he came up with the moniker. His center also regulates gene therapies, stem cells, and the U.S. blood supply.

Marks reportedly resigned under pressure from Kennedy on Friday, just before mass firings hit the FDA. The two men—one, America’s top vaccine regulator and the other, its top vaccine-conspiracy theorist—have a long history. In 2021, when Children’s Health Defense, the anti-vaccine organization formerly chaired by Kennedy, petitioned the FDA to revoke authorization for COVID shots, Marks is the one who signed the letter denying the request. It’s reasonable to assume that Kennedy and Marks were never going to see eye to eye on vaccines. But Marks publicly insisted that he wanted to stay in his role, and that he was willing to work with Kennedy. In a resignation letter, Marks wrote that Kennedy demanded nothing short of “subservient confirmation of his misinformation and lies.” (Marks declined to comment for this story.)

Of course, not all 10,000 people who were fired had this type of history with their new boss. But the cuts, in many ways, appear to be rooted in a similar antagonism. In his welcome address to HHS staff in February, Kennedy offered reassurance that he was not coming in with biases, and said that people should give him a chance. “Let’s start a relationship by letting go of any preconceptions that you may have about me, and let’s start from square one,” Kennedy told the crowd. “Let’s establish a mutual intention to work toward what we all care about, the health of the American people.” In firing a huge swath of his staff, Kennedy has made clear what he believes: Anyone with an HHS badge is complicit in the current system, whether or not they have anything to do with the country’s health problems. As Calley Means, a top adviser to Kennedy, said during a Politico health-care summit earlier today, the scientists who were laid off “have overseen, just demonstrably, a record of utter failure.”

Kennedy can argue all he wants that the focus of federal health agencies needs to shift more toward chronic disease. Means and other MAHA acolytes are right that, in some ways, America has gotten less healthy and federal bureaucrats haven’t done enough to solve the problem. But decimating the entire health bureaucracy in this country is not proving his point. Kennedy doesn’t look like he is setting the agencies on a productive new course. He looks like he’s just out for revenge.

Katherine J. Wu contributed reporting.

“It breaks my brain sometimes,” Dennis Rosloniec told me. For half a decade now, the 44-year-old media technician and mountain biker from Green Bay, Wisconsin, has done everything he can to understand the risks of getting COVID. He’s read the published studies. He’s looked at meta-analyses. And here’s the truth as far as he can tell: Each time he’s infected, the chances that something really bad will happen to his body ratchet up a little higher.

Dennis is not immunocompromised. He doesn’t have a chronic illness. He’s not obese or hypertensive or unvaccinated. He’s just a thoughtful autodidact, the kind of guy who references both The Simpsons and the Stoics as he talks. “I’m a fairly large, fit, white dude, for lack of a better term,” he said. But even now, in 2025, Dennis Rosloniec is afraid of COVID. Someone else might say he’s strangely so.

Dennis is still masking quite a bit. He’s wary of attending indoor social gatherings unless they seem especially important. And he’s been taking sundry extra measures to protect himself, based on fledgling research that he’s either heard about or read online, since 2020, when he bought a tube of ivermectin, the antiparasitic drug that was repurposed as a highly suspect COVID treatment, “out of anxiety” while awaiting the vaccines. Later on, he tried iota-carrageenan nasal spray, which he used as a hedge against COVID infection until “the science became sort of iffy on it.” These days, he keeps a bottle of cetylpyridinium-chloride mouthwash in his desk, so he can gargle when he thinks he might have been exposed. And he’s got a prophylactic nasal rinse, which, actually, he’s come to sort of like for reasons that don’t have much to do with COVID. “I breathe better through my nose when I use it.”

As a masker—and as a mouthwash guy and a nasal-rinser—Dennis knows he’s out of step with almost everyone he sees in person. “You feel pressure from the world,” he told me. “It makes you question, Is this really worth it?” But he also knows that certain others share his sense of caution, or even worry more than he does. He interacts with them online, on message boards for “COVID conscious” conversation. Theirs is a kind of shadow world where the fears and obligations felt by everyone in early 2020 never really went away, and lockdowns still persist in private.

Members of these groups say they’re only doing what they’ve always done since the start of the pandemic: In the parlance of the boards, they’re “still COVID-ing.” But some are also going further to protect themselves than they did in 2020, and seeking out new strategies for staying safe. They share tips online for how to fit their N95 masks, or for taping filters to the spouts of snorkels so they can safely visit indoor pools. They talk about the challenges of COVID-conscious parenting, and meet up for COVID-conscious church events on Sunday Zooms. They share lists of COVID-conscious therapists who would never try to tell you that you’re too afraid of getting sick, or that your risk perception is distorted, or that the problem here is not the world’s but your own.

The pressure that they feel from others used to be a little worse. Not so long ago, just the sight of someone in a mask was read as a reproach, a sanctimonious demand that lockdowns should continue for us all. Or maybe it was taken as “a reminder of how awful the last few years had been,” Lauren Wilde, a COVID-conscious therapist in Washington State, told me—“of how many people had died, of how much it sucked to get COVID.” But now that tension has started to subside. When people walk around in masks in 2025, or insist on having lunch outside even in the dead of winter, they find that their cautious habits earn them fewer angry looks. They’re less reviled than they used to be. They’re more often just ignored.   

Amid the nation’s mass indifference, their isolation has only gotten more intense. Their epistemic bubble has been shrinking too. This used to be the group that was most attuned to what “the science” said; the ones who paid attention to the dots painted on the sidewalk, six feet apart. In the past few years, as official rules for social distancing have been revoked, they’ve had to make up new ones for themselves. As standard COVID medicines grew ever more expensive, they’ve had to scour for alternatives. And as basic research on the virus hit a wall, they’ve had no choice but to do their own. “The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago,” the U.S. Department of Health and Human Services said last week, as local health departments braced themselves for funding cuts.

The COVID-conscious people have not abandoned science, Dennis told me. It’s the opposite: They’ve come to think that science has abandoned them.

If the evermaskers seem a little weirder every year, that’s because, in many ways, they haven’t changed at all. At a basic level, their COVID-conscious attitudes may not be so far from the mainstream. Twenty-one percent of Americans still think of the disease as “a major threat” to public health, according to a recent poll from Pew Research Center. Thirty-nine percent say we’re not “taking it seriously enough.” But if 50 million to 100 million adults harbor such concerns, very few are doing much about them. Masking rates were once as high as 88 percent; now they’re close to nil.

For those who still maintain their masking habit—4 percent, says Pew—the whiplash in social norms has been a shock. When masking mandates went away for public transportation, in the spring of 2022, viral videos showed people cheering as they ripped the fabric off their face. Wilde told me she remembered feeling how “it was like, nothing has actually changed, apart from the fact that someone with authority has said you don’t have to do this anymore. COVID is still risky; it’s still a new disease; we don’t know what happens 10 years after you’ve had it.” Why was everyone so quick to abandon those concerns?

The coronavirus never stopped its killing rampage: Hundreds of Americans die from it every week, even now in March of 2025, when the pandemic emergency is over and the virus is theoretically offseason. Nearly 50,000 people died from COVID in the U.S. last year, too. (The disease remains among the nation’s leading causes of death, on par with traffic accidents and suicides.) Yet even those alarming figures seem to matter less to COVID-conscious people than the vaguer risk of long-term complications. “It’s less about death, because if you die that sucks but you’re dead,” said Tess, a 35-year-old public-health researcher who asked to use her first name only, so that her professional work would not be connected to her COVID advocacy. “It’s disability. It’s living through it.” Tess told me that she already has long COVID, with brain fog and some loss of function in her lungs. “I want to maintain whatever health I have, and not make it worse,” she said.

Nancy, a 69-year-old woman who runs two weekly Zooms for COVID-conscious people from her home, and who requested to be identified by only her first name out of concern for her privacy, said that she and many members of her groups were less afraid of death than of a “reduction in our quality of life.” “Some of the data shows that if you keep catching it over and over and over again, that your chances of developing long COVID increase,” she told me, “and it also gradually weakens your immune system.”

[Read: Long COVID could be a ‘mass deterioration’ event]

Other data tell a different story, though. Some studies do suggest an ever-growing threat of long-term symptoms with each new SARS-CoV-2 infection. But according to the U.K.’s Office of National Statistics, which did perhaps the most thorough tracking of long-COVID rates through late 2022, the risk of long-term complications had been going down with reinfection. And although the coronavirus has produced several major spikes of new infections across the past five years, the proportion of those in the U.S. who report having disabilities has been either stable or increasing at a steady pace (depending on which agency’s data and definitions you consult). That means it hasn’t tracked each COVID wave the way that deaths have. According to one sensible interpretation, the risk of long-term disability was greatest early on in the pandemic, but long COVID’s threat, like the threat of COVID overall, has been fading over time.

The truth, or its best approximation, may be, to some extent, irrelevant. How any given person will perceive a threat is “a deeply psychological phenomenon,” Steven Taylor, a clinical psychologist at the University of British Columbia and the author of The New Psychology of Pandemics, told me, and one that is “influenced by values, your past history, your medical history, and your mental-health history.” (In the U.S., at least, people’s sense of risk from COVID, in particular, also has a strong connection to their politics.) Unless someone’s COVID-cautious habits have been causing major problems in their life, there’s no point in trying to discourage them, Taylor said. “I would let people choose their level of comfort with threats. That’s their decision.”

Yes, the evermaskers have assessed the costs and benefits of keeping up precautions. And yes, they say they’re happy with the trade-off, despite the many people who claim to know they’ve chosen wrong.

“There are some things that I miss,” Tess told me. “I miss a good punk-rock show where we’re all sweaty in the pit and that kind of stuff. That’s not necessarily something I’m gonna do now, but I have an approximation of it when I go to an outdoor punk show and I let everybody else go in the pit.” Nancy told me that she and her husband still have active social lives. They converse with neighbors from a distance: “We just holler and say hi to each other. It’s not like we’re living as monks or something, in total isolation.” And then she has all the people from her Zoom groups. “I think I have more friends now than I ever had in my life,” she said.

Certain challenges persist. Private or domestic disagreements over COVID-conscious choices—how to navigate the holidays, what to say to friends, which rules apply to kids—never go away. Nancy and her husband have two grown children and nine grandkids, all of whom have “gone on” from COVID, as she puts it. “There’s always a child that’s sniffling or coughing and you don’t know what’s going on,” she said. “We don’t like to make a big deal about it, so if we meet with them, we usually meet outside and do things outside together, but it’s hard.” Tess said she separated from her husband last year, in part because at one point he’d taken off his mask at work without telling her, got infected, and then passed along the illness. “Somebody who, literally, I just got married to, who I’m supposed to trust, lied to me, took away my agency, and got me sick,” she said. But moving out has not been easy: Any roommate she might find would need to share her views on COVID safety. (For now, she’s still living with her ex in a small apartment in the Bronx.)

Politics provide another potent source of conflict. Many COVID-conscious people are progressives and identify as advocates for those with disabilities. On Instagram, calls for staying COVID safe may be tethered to appeals to anti-racism, anti-capitalism, and anti-Zionism. For a set of people who feel a broader sense of crisis in America and despair at recent actions of the U.S. government, these concerns are additive. Having to accept the risk of getting COVID, Wilde told me, is just one more way “to feel like someone is trying to force something on you that you don’t want.”

A version of that complaint was once associated with people on the opposite end of COVID caution: those who resisted lockdowns and refused to wear masks. They voiced frustration, like the evermaskers do today, at a government that neglected their concerns, and at a public-health establishment that failed to meet their needs. Like the evermaskers, they felt forced to find their own approach to staying safe while other people yelled that they were wrong. I asked Wilde if she thought there might be some affinities between her own mindset and the one of parents who are opposed to vaccination, still another group of those who have come to trust their own judgment more than the government’s. “There’s a lot of overlap there. There just is,” she said. “That isn’t to say the people who are anti-vax have valid points at all. It’s just saying—and I say this a lot to the people I work with—being human is really hard.”

People tend to make it easier on themselves by remaining settled in the cultural mainstream. Those who break from that current may end up drifting past the limits of what’s agreed upon by scientists. Wilde gargles mouthwash when she feels at risk of an exposure to COVID; she also uses a nasal spray. She understands the weakness of the evidence—published trials of the cetylpyridinium-chloride mouthwash, for example, have found only the barest hints of its potential as a prophylactic—but what other tools does she have at her disposal? “Maybe these things don’t have any impact at all,” she said. Still, they’ve helped her get through some scary situations—and when it comes to scary situations, she treasures any help at all.

Dennis has a similar attitude. “Does it do anything? I’m not convinced,” he said of the mouthwash. “But, you know, it’s something that I can do.” He doesn’t trust everything he sees on COVID-conscious message boards, but at the very least, they let him know that other people in the world see risks the way he does. That’s important in itself. He said he took a recent flight to Ireland, and a small contingent of people were masking on the plane. One couple even tried to kiss each other with their masks in place. “Their faces did this high-five kind of thing … I was like, That’s really sweet. It just made me smile,” Dennis said. “We’re human beings, we want to belong to a tribe, right? We want to feel that sense of belonging.” Five years ago, it felt like everyone was in his tribe; it felt like all Americans were together in their fear of the unknown. Now that fear provides a rarer bond: togetherness in eccentricity, the communion of avoiding crowds.

My house was dark. Tinfoil covered the windows. The only light I could tolerate came from dimmable red bulbs. Ten weeks before, I had tested positive for COVID. On week three of my infection, I went to the emergency room with a debilitating migraine. On my third trip to the ER, I was hospitalized for seven days. I came home to a changed life. All the clichés about headaches are true—a pile of bricks on the head, a vise grip on the temples, an axe through the skull. The pain altered my consciousness. Trying to move or access a thought was like trying to see past a flashlight shining in my eyes.

It was 2024—a point at which most people in America considered the pandemic long since over.  But it wasn’t for me.

Some days, I couldn’t stop crying. It was more than despair at my circumstance: Long COVID can dysregulate mood and has been linked with depression. And the disease hijacked my stress-response system, leaving my body in a constant state of alarm. Any unexpected sound, even getting a text message, would set off a jolt of panic through my body, the same sensation as slamming on the brakes while driving. I lost my ability to cope. I broke a window in my house. I put a hole in the wall.

Researchers know more about long COVID than they once did, but it is still hard to define. The clearest consensus is that it’s a complex collection of symptoms that can affect almost every organ system in the body. Theories of why COVID can linger abound, and include ongoing inflammation, the virus never fully going away, and tissue damage. Many scientists agree that multiple factors likely contribute. Meanwhile, doctors are still struggling to treat the disease; less than half of doctors know how to diagnose long COVID and even fewer—28 percent—report knowing how to treat it, according to one 2023 survey. Long-COVID patients are still reporting that medical professionals don’t believe them, and though in some cases patients’ self-diagnosis might be off the mark, the reality is that many people living with long COVID simply aren’t getting the care they need.

In my case, that person who was in mind-numbing pain, unable to read, unable to write, unable to Google things or look at screens, unable to drive, drained by talking on the phone, spiraling in despair, and barely able to leave the house had to navigate the American health-care system. That I needed care for long COVID only made my predicament worse. From hearing chronically ill and disabled people speak about their experiences, I knew that to be sick in this country is a hell unto itself. But knowing something is true and experiencing it are different. I know that the Grand Canyon is deep, but I have never seen it with my own eyes. For our health-care system, I have been to the bottom.  

According to the latest federal survey as of September 2024, more than one in 20 adults in the United States had long COVID—defined as symptoms that last longer than three months. (The survey does not ask about the severity of symptoms.) Vaccines may help protect against the disease, but getting COVID still means risking long COVID. The coronavirus can leave patients with blood clots, brain dysfunction, organ damage, immune problems, and more; about a quarter of people with the disease report that it significantly disrupts their ability to perform daily activities. There are no FDA-approved medications to treat long COVID. Many medical institutions created specialty clinics to see patients with the disease, but much of what even the best clinics can offer is symptom management. Pinning down recovery rates from long COVID has been difficult, but according to several studies, after two years, the majority of people living with long COVID had not fully recovered.

Three months into my illness, I had been treated for migraines and a concussion—COVID’s impact can mirror a traumatic brain injury—but not long COVID. The tribe that I belong to, Cherokee Nation, runs the largest outpatient facility of any tribe in the U.S., but my primary-care provider there told me she didn’t know how to treat long COVID. I was referred to my tribe’s specialty clinic for rare and infectious diseases. When I managed to get that appointment, however, the provider told me he knew how to treat only pulmonary long-COVID symptoms (which many long-COVID patients don’t have). Nowhere in Indian Health Services, the treaty-based federal program that serves 2.8 million Native Americans nationwide, is there a long-COVID clinic. (An IHS spokesperson said the Biden administration would have needed to set up such a clinic.)

I started looking outside Indian Health Services and found a long-COVID clinic an hour’s drive from my house. When I called, I learned the clinic had shut down. The state where I live, Oklahoma, does not have a long-COVID clinic. My dad found one in Arkansas. Like many long-COVID clinics, it required that patients apply to get in. But after I submitted all the paperwork, I didn’t hear back.

I realized that to access care, I would need to travel. At the time, I was unable to drive, and my symptoms limited how much time I spent outside my house. When I called the Cleveland Clinic, I was transferred four times until I was accidentally forwarded to the customer-satisfaction survey. I spoke with one receptionist who told me her clinic didn’t take patients from out of state, and another who warned that traveling to her clinic probably wouldn’t be worth the time and money. (A spokesperson for the Cleveland Clinic wrote that patients should be able to make an appointment without a referral, and that the clinic and its staff “strive to provide patients with timely access to scheduling and care.”)

In my first telehealth appointment with a nationally recognized COVID clinic, the doctor wouldn’t discuss her recommendations but said I could read them in the patient visit notes. When I explained that my symptoms made reading impossible, she asked me if someone could read the notes for me. Later, my mom read me a copied-and-pasted list of healthy-lifestyle information, such as the benefits of taking a daily probiotic and the importance of getting enough sleep. The list included the doctor’s favorite bedtime teas. I told my mom to stop reading.

A few months into the pandemic, some patients reported that their symptoms weren’t going away. Through their advocacy, long COVID got its name. By 2022, hundreds of long-COVID clinics had opened across the country. There is no standard for what kind of care these clinics provide: Some are multidisciplinary teams, but many are one specialist or one nurse practitioner. This patchwork system of care has only deteriorated as attention on the disease has dwindled.

Many of the long-COVID clinics that popped up during the pandemic have closed. As part of my reporting for this story, I compiled a list of 171 clinics, drawing from the Survivor Corps website, a patient-led resource-and-advocacy group, and from searching online for long-COVID clinics by state. I then called each clinic to verify which ones were still operating. Of those, 79 were still open and accepting new patients, five were not accepting new patients or outside referrals, 61 had closed, and 15 were unreachable after two attempts. Eleven more were advertised as long-COVID clinics but don’t have a medical doctor or nurse on staff; they provide services such as speech or occupational therapy. (My assistant Sydney Anderson and intern Cheyenne McNeil, who have been helping me work through my illness, contributed to this reporting.)

Based on the list we assembled, 22 states have no long-COVID clinics accepting new patients. Given COVID rates in those states, we estimated that almost 3 million people who currently have long COVID reside there. Because of insurance policies, licensing and telehealth laws, and the cost of travel, not having a nearby clinic can easily mean that patients won’t access care. Of the long-COVID clinics that are still open, some have wait lists, do not accept outside referrals, do not take insurance, treat only specific long-COVID symptoms, or do not take patients from outside of their geographical area.

Getting in touch with the long-COVID clinics that are still open is another barrier. I spoke with operators who had never heard of their institution’s long-COVID clinic; I got transferred to the office that schedules COVID tests; I got transferred to disconnected lines; I called numbers that rang and rang and rang and rang. One day, I spent two hours on the phone and spoke with only three people who could provide information. When I called Yale New Haven Health System’s clinic, one of the most well-known in the country, I got transferred to a disconnected line. I called back and got transferred to the customer-satisfaction survey. I called a third time and left a message. I called a fourth time, trying a different number, and spoke with a receptionist who said the clinic was closed. (The clinic is still open; in a statement, Yale New Haven Health said that the phone number for the long-COVID clinic is on its website, that the volume of calls the clinic receives is very high, and that it had not previously heard of patients having difficulty accessing the clinic.)

If you are healthy, this might all sound like the familiar nightmare of customer service to which we have all become accustomed. But for people who are sick, it is a wall that stands between them and the care they need. When you are sick, you look at that wall and think, I am not well enough to climb it.

The closure of long-COVID clinics in recent years has affected patients who need care. I talked with people who, like me, have been living with long COVID later in the pandemic. Ryan Parker lives in Portland, Oregon; is a member of the Northern Cheyenne tribe; and used to work in philanthropy. Like many people with long COVID, Parker tried to work through his illness. He told me he returned from one work trip so sick that he couldn’t get out of bed for a month. Last fall, the long-COVID clinic that was treating him closed. Because of the disease, Maeve Sherry has been disabled and unable to work for three years. They found a long-COVID clinic in Great Falls, Montana, three hours from where they lived at the time, but it closed in December of 2023, they said. There are now no long-COVID clinics in Montana. When Myisha Hill was still struggling to do household chores, take care of her kids, and even talk weeks after a COVID infection, she looked up the long-COVID clinic near where she lives in Las Vegas, she told me. But it, too, had closed. There are now no long-COVID clinics in Nevada.  

A spokesperson for the University Medical Center of Southern Nevada wrote that the clinic closed “amid low demand.” Other clinics echoed this response, saying they suspended operations after patient numbers dwindled. A few clinics also stated that they now refer long-COVID patients to primary care. Several spokespeople told me as a reporter that their clinics were still open, but when I called as a patient, I was told the clinic was closed. And even when clinics are open, patients still face barriers: I spoke with people with long COVID who told me they couldn’t access care because a clinic didn’t take their insurance, their doctor didn’t send a referral, or the clinic rejected them as a patient.

The alternative to enrolling in a clinic is to try to see a regular neurologist or cardiologist. But many specialists have lengthy wait times, and long-COVID patients are twice as likely as the general public to report that this is why they can’t get care. Parker, for instance, is trying to see a specialist for myalgic encephalomyelitis/chronic fatigue syndrome, a form of debilitating fatigue that is common with long COVID. The first available appointment is nine months out.

And when patients are finally seen, the care itself might not be competent. Parker’s primary-care provider suggested that his debilitating fatigue was a product of anxiety. Several doctors have also told Kelly Rider that her problem was just anxiety—and one said it was perimenopause. Sometimes doctors prescribe things that exacerbate symptoms—such as exercise for chronic fatigue. When Diem-Han Dinh’s doctor ordered a stress test, she explained that she was unable to run. He didn’t believe her. At the stress test, she almost fainted.

Eight months into my illness, I boarded a plane and traveled with my mother to Rochester, Minnesota. The long-COVID clinic I finally got into was Mayo. The off-label medication they prescribed didn’t do much, but I learned about my illness and how to manage my symptoms, which has improved my quality of life. Other things have helped too. Thanks to an arsenal of migraine treatments, my headache—although not gone—is less severe. Thanks to eight months of vision therapy, I can now focus my eyes and am practicing reading. And, in writing this article, I have gotten back to reporting. What I had to go through to get here, I would not wish on anyone.

The resources our system of medical care can offer to those wanting to learn about, cope with, and heal from what COVID has done to their body are beyond inadequate, and are likely to get worse. In February, the Trump administration ordered the Department of Health and Human Services to dissolve its advisory committee on long COVID. In March, the department announced it would close its Office for Long COVID Research and Practice, and began canceling grants from the National Institutes of Health for COVID studies.

Sick and disabled people have been pushed to the margins of our society for a long time. There was a moment during the pandemic when I saw our collective concern focused on the ill. Living with long COVID, I sometimes wonder where that concern went. I feel like the wounded antelope picked off from the herd. Everyone else has moved on, while I am stuck in my illness. I could be angry at each individual hypocrisy—each person who preached the importance of masks only to go back to normal without me—but I am not. Instead, I am sad that what is more powerful than our concern for the sick is the indifference of our health-care system.

At the turn of the 20th century, William Wrigley Jr. was bent on building an empire of gum, and as part of his extensive hustle, he managed to persuade the U.S. Department of War to include his products in soldiers’ rations. His argument—baseless at the time—was that chewing gum had miraculous abilities to quench thirst, stave off hunger, and dissipate nervous tension. But he was right: Scientists have since found that gum chewing can indeed increase concentration, reduce the impulse to snack, alleviate thirst, and improve oral health.

Perhaps that’s why people around the world have had the impulse to gnaw on tacky materials—roots, resins, twigs, blubber, tar made by burning birch bark—for at least 8,000 years. Today, gum is again being marketed as a panacea for wellness. You can buy gum designed to deliver energy, nutrition, stress relief, or joint health; scientists are even developing gums that can protect against influenza, herpes, and COVID. Ironically, this new era of chewing gum is manufactured with a distinctly modern ingredient, one not usually associated with wellness: plastic.

By the time Wrigley began his business venture, Americans had grown accustomed to chewing gum sold as candy-coated balls or packaged sticks. The base of these chewing gums was made from natural substances such as spruce resin and chicle, a natural latex that Aztecs and Mayans chewed for hundreds if not thousands of years. Unfortunately for 20th-century Americans, the chicozapote trees that exude chicle take a long time to grow, and if they are overtapped, they die. Plus, cultivated trees don’t produce nearly as much chicle as wild trees, says Jennifer Mathews, an anthropology professor at Trinity University and the author of Chicle. In the 1950s, chicle harvesters began struggling to meet demand. So gum companies turned to the newest innovations in materials science: synthetic rubbers and plastics.

Today, most companies’ gum base is a proprietary blend of synthetic and natural ingredients: If a packet lists “gum base” as an ingredient, that gum most likely contains synthetic polymers. The FDA allows gum base to contain any of dozens of approved food-grade materials—substances deemed either safe for human consumption or safe to be in contact with food. Many, though, are not substances that people would otherwise think to put in their mouth. They include polyethylene (the most common type of plastic, used in plastic bags and milk jugs), polyvinyl acetate (a plastic also found in glue), and styrene-butadiene rubber (commonly used in car tires). The typical gum base contains two to four types of synthetic plastics or rubbers, Gwendolyn Graff, a confectionery consultant, told me.

Everything we love about gum today is thanks to synthetic polymers, Graff said. Polyvinyl acetate, for example, strengthens the bubble film. “If you blow a bubble, and it starts to get holes in it and deflate, that’s usually an indicator that it doesn’t have polyvinyl acetate,” Graff said. Styrene-butadiene rubber creates a bouncy chewiness that makes gum more likely to stick to itself rather than to surfaces like your teeth. Polyethylene can be used to soften gum so it doesn’t tire out your jaw. Gums with only natural polymers “can feel like they’re going to fall apart in your mouth,” Graff said.

Plastic gum, though, also falls apart, in a way: Gum chewing has been linked to microplastic ingestion. In a study published in December, U.K. researchers had a volunteer chew on a piece of gum for an hour, spitting into test tubes as they went. After an hour of gum chewing, the saliva collected contained more than 250,000 pieces of micro and nano plastics—comparable to the level of microplastics found in a liter of bottled water. In a study presented at a recent meeting of the American Chemical Society (which has not yet been peer-reviewed), a graduate student’s saliva contained elevated microplastic levels after she chewed several commercially available gums, including natural ones. The research on gum chewing and microplastics is still limited—these two papers effectively represent analysis of just two people’s post-chew saliva—but gum chewing has also been correlated with higher urine levels of phthalates, plastic-softening chemicals that are known endocrine disruptors.

Scientists are still learning about the health impacts of microplastic ingestion, too. Microplastics find their way into all kinds of foods from packaging or contamination during manufacturing, or because the plants and animals we eat absorb and ingest microplastics themselves. As a result, microplastics have been found in human livers, kidneys, brains, lungs, intestines, placentas, and breast milk, but exactly how our bodies absorb, disperse, and excrete ingested plastic is not very well studied, says Marcus Garcia, who researches the health effects of environmental contaminants at the University of New Mexico. Some research in mice and cultured cells hint that microplastics have the potential to cause damage, and epidemiological research suggests that microplastics are associated with respiratory, digestive, and reproductive issues, as well as colon and lung cancer. But scientists are still trying to understand whether or how microplastics cause disease, which microplastics are most dangerous to human health, and how much microplastic the body can take before seeing any negative effects.

The answer could affect the future of what we choose to eat—or chew. Ingesting tiny plastic particles might seem inevitable, but over the past 10 years or so, Americans have grown understandably fearful about bits of plastic making their way into our food, fretting about microwaving food in plastic containers and drinking from plastic bottles. Gum has, for the most part, not triggered those worries, but in recent years, its popularity had been dropping for other reasons. In a bid to reverse that trend, gum companies are marketing synthetic gum as a tool for wellness. Just like Wrigley, they are betting that Americans will believe in the power of gum to soothe nerves and heal ailments, and that they won’t think too hard about what modern gum really is. For anyone worried about swallowing still more plastic, after all, gum is easy enough to avoid.

Robert F. Kennedy Jr., staring down his first major health crisis as the head of Health and Human Services, had a plan. After Texas experienced the first measles death in the United States in a decade, Kennedy told Fox earlier this month that the federal government was delivering vitamin A—an unproven treatment that Kennedy has promoted as an alternative to vaccines—to measles-stricken communities in West Texas “right now.” But a Texas official told me this week that no doses of vitamin A have arrived at the state health department—not because RFK Jr. broke his promise, but because Texas doctors didn’t ask for them.

The doses are available “if we need them,” Lara Anton, the senior press officer for the state public-health department, told me in a statement. But her office, she said, has not requested any, “because healthcare providers have not requested it from us.” Anton had no records of any shipments of vitamin A, budesonide, clarithromycin, or cod-liver oil—all of which Kennedy has said can help with measles—even though the state has received 1,760 additional vaccines for measles, mumps, and rubella from the federal government since the middle of February.

When I asked Anton if Texas officials thought vitamin A treatment was useless, she referred me to a state website, which reads, “Vitamin A cannot prevent measles. Vitamin A may be useful as a supplemental treatment once someone has a measles infection, especially if they have a severe case of measles or low vitamin A levels and are under the care of a doctor.” The local health department for Gaines County, the epicenter of the deadly outbreak, told me that it has not received any of the alternative treatments either. (HHS did not respond to a request for comment.)

In just a few short weeks on the job, Kennedy has broken with decades of public-health precedent in responding to measles. In a March 2 op-ed for Fox, he acknowledged that vaccines “not only protect individual children from measles, but also contribute to community immunity”—only after emphasizing that “the decision to vaccinate is a personal one.” He has also endorsed vitamin A, which is not FDA-approved to treat measles, as a way to substantially decrease deaths from the disease. Vitamin A can reduce the risk of death among children under 2 who are infected, according to a 2005 meta-analysis. However, it has not been shown to effectively prevent the disease, contrary to Kennedy’s claim in his Fox interview.

It’s hardly surprising that a health department wouldn’t want shipments of unproven treatments. But Texas’s decision to deny an offer of help from the top federal health official during a deadly measles outbreak suggests that not everyone in the nation’s public-health apparatus is ready to fall in line behind Kennedy’s unfounded claims. That apparently includes some staff at the Centers for Disease Control and Prevention, which falls under Kennedy’s purview. On Tuesday, the CDC’s top communications officer announced his resignation in an op-ed lambasting Kennedy’s embrace of alternative measles treatments. Public records I’ve gathered from Texas show that CDC staff are aiding at least one local health department in spreading pro-vaccine messages to the local community. In a series of emails with Texas health workers, for instance, CDC officials workshopped multiple pro-vaccine public-service announcements and helped translate them into Low German and Spanish. “The best way to protect against measles is with the measles, mumps, and rubella (MMR) vaccine,” one flyer read. And a letter from the local health-department executive director, Zachary Holbrooks, that was distributed to parents of unvaccinated schoolchildren stated: “I strongly encourage you to have your child vaccinated as soon as possible.” None of the materials I obtained made any mention of vitamin A.

It’s unclear if those pro-vaccine messages are convincing locals, particularly the Mennonite population at the center of Texas’s outbreak. Last school year, just under 82 percent of kindergarteners in Gaines County were vaccinated against measles. Data from the state’s vaccine registry suggest that immunizations are up roughly 10 percent this year compared with the same period in 2024, although Texas has limited visibility on vaccine administration. Holbrooks recently told The Atlantic that three local Mennonite churches had refused the district health department’s request to place a measles-testing site on their property. Meanwhile, residents are clearing out local drugstores’ supplies of vitamin A and cod-liver oil, and showing up to a makeshift clinic that is giving out cod-liver oil. This week, The New York Times reported that some children in the area are taking such high doses of vitamin A that they are showing signs of liver damage.

After casting a key vote to confirm Kennedy as health secretary, Senator Bill Cassidy of Louisiana, a Republican, told his colleagues that Kennedy would help with “restoring trust in our public-health institutions.” But Kennedy has already made that laudable goal even less achievable. So long as the nation’s top public-health official is propping up purported miracle cures, families in West Texas will be encouraged to believe that not vaccinating their children is a responsible choice. Public-health leaders can’t fix that problem on their own, even if they refuse to play along with Kennedy’s pseudoscientific routine.

By design, clinical trials ask their participants to take on risk. To develop new vaccines, drugs, or therapies, scientists first have to ask volunteers to try out those interventions, with no guarantee that they’ll work or be free of side effects. To minimize harm, researchers promise to care for and monitor participants through a trial’s end, long enough to collect the data necessary to determine if a therapy is effective and at what cost. End a trial too early, and researchers might not be able to figure out if it worked—or participants may be left worse off than when they started.

But that is exactly what the Trump administration has been asking scientists across the country to do. Since the end of last month, the administration has forced the National Institutes of Health, the world’s largest public funder of biomedical research, to terminate hundreds of research awards made to scientists across the country. Among those NIH-funded projects are more than 100 clinical trials that now may be forced to halt abruptly, agency officials told me. And those officials expect further orders to cancel hundreds more. (The NIH officials I spoke with for this story requested anonymity for fear of job loss or other retaliation from the federal government.)

The Trump administration has been laying siege to science for months—just this week, the Department of Health and Human Services, which oversees the NIH, announced that it will fire 10,000 people. But the federal government’s disregard for clinical trials is one of the most direct illustrations yet that the nation’s new leaders have abandoned people’s health.

Grinding these trials to a screeching halt is “completely reckless,” Katie M. Edwards, a social-work professor at the University of Michigan, told me. Participants might still need to be tapered off a drug regimen to avoid the symptoms of withdrawal, or monitored for reactions to a device implanted in their body; they might depend on the intervention they’re receiving for their mental or physical health. Edwards herself has had three clinical trials terminated this month, including one testing whether an online mentoring program could reduce rates of depression, anxiety, and self-harm among trans teens; halting it, she told me, “could lead to a number of negative outcomes, including increasing suicidality.” The canceled trials also include studies on safety and effectiveness of COVID-19 vaccines during pregnancy; increasing use of PReP, the HIV preventative, among people with substance-abuse disorders; probiotics and prebiotics for infants born to mothers living with HIV; and improving adherence to breast-cancer and heart-disease drugs.

In boilerplate letters, the federal government has told scientists that their science is no longer consistent with agency priorities or a good use of taxpayer funds, and that the agency will no longer fund their work. That’s tantamount to being told to “stop work immediately,” Matthew Spinelli, an infectious-disease physician at UC San Francisco, told me: He received a termination for a study trialing an antibiotic that can prevent sexually transmitted bacterial infections but that also can cause rare but substantial side effects.

After The Atlantic reached out to NIH for comment, a spokesperson wrote over email that HHS is altering its funding practices to align with new department priorities, and that “it’s important to prioritize research that directly affects the health of Americans while taking the protection of human participants in our supported clinical research very seriously.”

In the past, if an NIH-funded clinical trial needed to halt—in an instance of, say, misconduct or clear harm to patients—the agency could be counted on to provide money and support to ensure that the study’s participants wouldn’t take on further risk and that even prematurely ending work remained ethically intact. Now, though, the government is the one causing risks to patients, well beyond what they signed up for.

Clinical trials are usually designed with a predetermined end date so that researchers can collect the data they need and make sure participants’ efforts don’t go to waste. Generally speaking, trials are halted midway only if it’s in the participants’ best interest—if, say, the treatment being tested is clearly doing more harm than good. Even then, winding down a clinical trial safely can take months as researchers perform final check-ins with participants, collect additional data on safety, and in some cases help make arrangements for additional clinical care—work that requires time, personnel, and funds. “To stop all of a sudden, with no warning and no grace period? I’ve never seen that,” Domenico Accili, the director of the Columbia University Diabetes and Endocrinology Research Center, told me.

The Trump administration has said that the projects it’s ending are unscientific or not in service of improving the health of Americans. But as I’ve previously reported, its decisions about which grants to cut have been made seemingly without regard to scientific legitimacy, according to even the NIH officials being forced to sign the cancellation letters. The cuts have variously targeted studies on LGBTQ populations, DEI, health equity, and vaccine uptake; projects in foreign countries; grants that happen to have been housed at universities the Trump administration is sanctioning for other reasons; projects that make mention of COVID-19. This blitz has also hit grants less focused on those topics: Projects on antibodies, genetics, and dementia have been cut simply because—as far as scientists and NIH officials can tell—their titles or descriptions mention words such as diversity.

All of these research grants were awarded on the basis of scientific merit, and to halt them for political reasons is “totally unethical,” Holly Fernandez Lynch, a bioethicist at the University of Pennsylvania, told me: “Once you have asked people to undertake the burden and risk of research participation, you don’t get to then just decide, Oh, we don’t want to do it anymore.”

But that’s the position researchers have been forced into. Without financial resources, they can’t deliver the care and monitoring they promised participants when they enrolled them in their trials—even though they’ve already collected data and personal information. “People are being left in every stage of the research pipeline,” Delivette Castor, an epidemiologist at Columbia, who received a termination for a cervical-cancer-prevention clinical trial, told me. “It is a violation of trust, and all the resources we have put in.”

Lauren Obsorne, an ob-gyn at Cornell, told me that she and her colleagues had just started a trial that paired doulas with women on Medicaid, or from racial-minority backgrounds, to test whether an education-focused intervention could reduce postpartum depression and heart problems. After the NIH terminated the study’s grant, the doulas had to call mothers who had given birth days or weeks before to say they could no longer offer help, Osborne told me. Kathleen Sikkema, a clinical psychologist at Columbia, told me she was close to completing her clinical trial, which aimed to improve engagement with HIV care among women in South Africa with a history of sexual trauma, when her termination letter arrived. But halting her work now would mean skipping a final assessment for at least 20 people, to check their viral load and determine their next course of treatment. “That’s terribly needed,” she told me.

Many researchers hit by the NIH’s funding cuts are still trying to figure out ways to safely offboard people from their studies. Some have sought funds from their department or university; some are turning to private donors or pharmaceutical companies, or dipping into money they’ve made as practicing physicians. But those resources are small and spotty. Several researchers told me that, even in a best-case scenario, they likely have just weeks or months of money left. Even now, “I’m hoping at some point I can charge NIH,” Sikkema, who’s working with her university to pool funds for the remainder of her study, told me. But “there isn’t an open federal fund that we can charge,” she added. “It’s not completely clear who’s going to pay for it in the end.”

During the NIH’s initial funding freeze, two officials told me, agency officials were told to alert leadership if the halt on payments to certain studies might compromise patient safety, so that exceptions might be considered. And early last month, a subset of clinical trials were among the first studies that NIH leadership said could have their grant funds unfrozen (though many payment halts continued in the weeks after). But on the whole, the NIH’s recent guidance on preserving patient safety has been murky at best, one of the officials said, and added that they were not aware of any exceptions that had ever been made. Another official described the policy on exceptions as “piecemeal permissiveness,” saying that it offered only the guise of safeguarding people in studies. And for grant terminations, scientific staff at NIH have not been allowed to petition for exceptions at all, even if participant safety is clearly on the line, officials told me. “If they are on the list, they are terminated,” one of them said.

A few researchers told me that they had received documents from the NIH saying that they “may request funds to support patient safety and orderly closeout of the project.” None of them, though, was told how exactly they might go about requesting those funds, what the budget might be, what sorts of actions would qualify, or even what counts as “patient safety” or “orderly closeout” under the agency’s new leadership. After the grant terminations began, at least one of the agency’s institutes, the National Institute of Child Health and Human Development, prepared more specific instructions for researchers on how to navigate closeout procedures, specifying, for instance, that all study participants should be informed of the study’s halt and that “there must be a plan” for any ongoing safety monitoring. But those documents did not accompany the first several rounds of NIH terminations, which began late last month. And although a few researchers told me they were now working with their university to try to seek additional funds from the NIH, they also said they weren’t hopeful that the government would grant their requests—or even honor any payments they did offer.

Even if researchers are able to cobble together the funds to help their participants exit trials safely, halting studies early could still nullify the contributions of the people who enrolled. Studies need a bare-minimum number of data points, and if the target number of participants fails to complete a trial, researchers might not be able to calculate anything about the interventions’ usefulness or safety. Nor can trials easily restart, if the flow of money picks back up. Many studies rely on collecting information at precise, regular intervals; miss just one data point, and an entire analysis can be thrown off. For other studies, skipping a scheduled dose of a drug, or a scheduled check-in with a patient with a progressing condition, can compromise how well an intervention works.

Many of the studies targeted by the Trump administration also focus on populations at higher risk of worse health outcomes, who have been historically neglected by science and medicine; recruiting participants to some of these trials, researchers told me, took years of establishing and maintaining trust, as well as careful partnerships with local leaders. Any betrayals to the commitments researchers made to those people could compromise the ability of scientists to work with them in the future. “Why are people going to be willing to contribute to science and enroll in these studies if they feel like the rug can be pulled out from under them at any time?” Fernandez Lynch told me.

Thiago Arzua, a neuroscientist at Columbia, told me that his research has been affected by the NIH’s recent grant cancellations. But Arzua was also enrolled as a participant in an NIH-terminated study that tracked HIV prevention and transmission among sexual and gender minorities. “It’s pretty sad,” he said, to see years of investment from underserved communities go to waste. The message coming from the government has never been clearer, he and others told me. From the start, the Trump administration has flaunted its lack of interest in advancing science or supporting the people who do it. Now its actions are declaring that it also doesn’t care about the people science is trying to help.

If there was a mascot to represent everything that Robert F. Kennedy Jr. sees wrong with food, it would be Big Daddy’s Primo Pizza. A staple of school cafeterias, Big Daddy’s pizza bills itself as an “over-the-top exceptional slice to entice students” that’s made with whole-wheat flour. It’s mass-produced in a factory with industrial additives so that it just needs to be reheated right before serving. That makes the pizza an ultra-processed food, which Kennedy is set on removing from school lunches. Except he can’t. The Department of Agriculture, which sets the rules for school nutrition, isn’t under his jurisdiction as secretary of Health and Human Services.

RFK Jr. sometimes talks as though he has the power to unilaterally fix America’s food problems. But his attempts to do so will go only so far, at least in part by virtue of the absurdity of how food is regulated. The job is split between the FDA and the USDA, sometimes in ways that make little sense. Consider the issue of food safety. Regardless of whether a pepperoni pizza will be sold in schools or the grocery store, its safety is overseen by the USDA. Inspectors typically visit facilities where frozen pizza is topped with pepperoni at least once a day—inspectors are also present at the slaughterhouse where the pig is butchered and the plant where the actual pepperoni is made. Meanwhile, because frozen cheese pizza is meatless, its safety falls to the FDA, which inspects most facilities at least once every five years. Open-faced sandwiches that contain meat are also regulated by the USDA, but slap another piece of bread on top, and they’re the FDA’s problem.

Yes, two different agencies both employ inspectors to do ostensibly the same thing—inspect food products—in some of the same factories, solely because a USDA employee inspecting a company making open-face sandwiches isn’t allowed to address the health and safety of the closed sandwiches nearby. None of this is efficient. In fact it is so inefficient that the Government Accountability Office, the government’s independent watchdog, has warned that the food-safety system is at high risk for “fraud, waste, abuse, and mismanagement.” Are you listening, Elon? The Trump administration is sleeping on a move that would please both the MAHA crowd and the backers of DOGE: creating a single agency for food safety and nutrition policy. Call it the Department of Food Oversight and Optimal Diets.

Democrats, too, should want a Department of FOOD. In fact, Democratic lawmakers in Congress have introduced legislation proposing a single food agency at several points over the past 20 years. America’s discombobulated approach to food is the by-product of a century’s worth of bureaucracy. In 1906, Congress passed two separate laws setting different food-safety standards for meat and nonmeat products. At the time, both sets of rules were enforced by the USDA, until the FDA was carved out of it in 1940. Since then, the question of who is in charge of what has gotten only more complex. When the EPA was created during the Nixon administration, for example, regulating how much pesticide can be present on the food you buy was transferred to the new agency.

Perhaps most maddening about the status quo is that food is simultaneously over- and under-regulated. The USDA is understandably rigorous about the safety of meat, but pepperoni pizza being inspected three different times is hard to justify, argues Sandra Eskin, who led the USDA’s food-safety arm during the Biden administration. At the same time, the FDA lacks the staff to inspect every factory, and the result is that meat receives far more scrutiny than many other products, such as bags of chips and frozen cheese pizzas. The different levels of oversight is “hard to defend,” Thomas Gremillion, the director of food policy at Consumer Federation of America, which advocates for more stringent food-safety regulations, told me. A single food agency would be able to more easily reallocate resources to even out the gaps. (Neither the FDA nor the USDA responded to a request for comment.)

The Department of FOOD wouldn’t just be more efficient; it could also help address the nation’s diet woes. Consider salt. Americans are estimated to consume nearly 50 percent more than what the U.S. Dietary Guidelines recommend, and advocacy groups have long urged the FDA to do something about it. But Congress has balked at the USDA’s and FDA’s relatively modest attempts to clamp down on how much salt can be added to our food. Last March, lawmakers added language into a government funding bill that would delay the FDA from releasing new sodium-reduction goals and prevent the USDA from further restricting the amount of salt in school meals. Regulators’ hands were tied.

A Department of FOOD that is funded independently of Congress would be a way out of this mess. Independent agencies can pursue policies without as much fear of Congress revoking their funding for pursuing a politically unpopular rule. All of this might seem a bit pie in the sky; creating a new independent agency is no small feat. Congress would very likely need to pass a law to make it happen, even though the Department of FOOD would be insulated from their demands. To create any new agency takes “just a hell of a lot of work to pull it off,” Peter Lurie, the head of the Center for Science in the Public Interest, which led the campaign for the FDA to mandate lower salt levels, told me. But something similar has happened before: The Consumer Financial Protection Bureau centralized various agencies’ responsibilities into one independent organization after a raft of subprime mortgages led to the financial crisis of 2008.

Political inertia is on the Trump administration’s side. Diet-related disease is a crisis in its own right. More than 40 percent of American adults are now obese, as is approximately one in five children. Kennedy himself talks a lot about how food is making Americans sick, and other Republicans are listening. Several Republican lawmakers have insisted in recent weeks that the FDA needs to get more serious about regulating food additives, such as dyes. If Kennedy were to argue that a new food agency was the best way to achieve these goals, surely Republicans would have to listen. At the same time, Elon Musk’s Department of Government Efficiency and its efforts to dissolve whole government agencies are opening the door to drastic action.

Of course, Musk seems more intent on outright destroying the federal agencies than creating government reform. Kennedy, likewise, seems focused more so on overly simplistic solutions, like firing the staff of FDA’s food center, than on altering the structures that have made those workers so inefficient. That neither Kennedy or Musk has said anything about consolidating the food agencies says a lot in its own right. If you actually wanted to make the government more efficient, the Department of FOOD would be an easy place to start. But right now in the Trump administration, proposing a new agency isn’t nearly as good of a talking point as blowing one up.

There are, at last count, nine different medals you can earn at the Comrades Marathon, a historic 55-mile race that runs between the South African cities of Durban and Pietermaritzburg. Gold medals are awarded to the top 10 men and women. The rest depend on hitting certain time standards. To earn a silver medal, for example, you have to finish the race in less than seven and a half hours. To earn a Robert Mtshali medal, named for the first Black runner to complete the race, you have to break 10 hours. And to receive a finisher’s medal and be listed in the official results, you have to break 12 hours. Run any slower than that, and you not only lose out on a medal: After half a day grinding yourself to exhaustion, you aren’t even allowed to finish the race.

As each time threshold approaches, the stadium announcer and spectators count the seconds down. For the final 12-hour deadline, a group of race marshals gathers in the finishing chute. When the countdown reaches zero, they lock arms to block the finish line. Either you make it or you don’t. When I reported on the race for Canadian Running in 2010, the final finisher, in 11:59:59, was a runner named Frikkie Botha, from nearby Mpumalanga. He placed 14,342nd. A stride behind was 48-year-old Dudley Mawona, from the inland town of Graaff-Reinet. The din of spectators’ vuvuzelas crescendoed as he lunged forward and caromed off the race marshals’ blockade.

The tableau at the Comrades finish line evokes the Dutch painter Hieronymus Bosch’s depictions of hell, with legions of scantily clad figures (in this case, wiry runners in tiny shorts) writhing in varying degrees of distress under the darkening sky. You can almost hear the moaning and wailing—except that the actual soundtrack is surprisingly cheerful. People are thrilled to have arrived, proud of the effort they’ve put in, and brimming with inexplicable enthusiasm even if they’re massaging inflamed hamstrings or lancing gruesome blisters. This includes a number of the runners who never make it past the race marshals’ impenetrable arms. Mawona accepted his fate with good grace. “I feel disappointed,” he told me for my 2010 story. “But I am glad I was almost there.” Both he and Botha resolved to return the following year.

[Read: The Summer Olympics can’t keep up this speed]

To say that long-distance runners embrace difficulty is to say the obvious. When you watch many thousands of people happily push themselves through a race that they might not even be allowed to finish, though, you start to get the hint that something deeply human is going on. People like things that are really hard. In fact, the enormity of a task often is why people pursue it in the first place. This is a puzzling phenomenon, when you stop and think about it. It violates all sorts of assumptions about rational action and evolutionary selection and economic theory. Psychologists call it the Effort Paradox.

The term was introduced in 2018 by a University of Toronto social psychologist named Michael Inzlicht, along with colleagues at Brown and Carnegie Mellon. As Outside magazine’s endurance-sports columnist—not to mention a lifelong runner—I was immediately fascinated by the idea. As I wrote at the time, the usual assumption is that effort is a negative. “Toil and trouble,” as Adam Smith called it in The Wealth of Nations back in 1776, subtracts from the value you assign to things. When you buy a coffee table from IKEA, you have to wrestle with a bag of seemingly mismatched screws and some inscrutable pictographic instructions. If you can simply buy the same thing preassembled, Smith and his intellectual heirs predict that you’ll be willing to pay more to avoid the hassle. And it’s not just about money. The law of less work, as formulated by the American psychologist Clark Hull in the 1940s, dictates that given two choices with similar outcomes, any person—or any living organism, for that matter—will choose the option requiring the least effort.

Bizarrely, though, studies have found that we actually value the coffee table we’ve had to painstakingly construct more highly than the identical preassembled version, a phenomenon now known as the IKEA effect. As I wrote for Outside, something like this dynamic applies across all kinds of human behavior. The mountaineer George Mallory famously declared that he wanted to climb Mount Everest “because it’s there.” You can speculate about his other motivations: reaching the highest point in the world, eternal fame, and so on. But the fact remains that many of us head to the mountains with no expectation of celebrity, run marathons in the middle of the pack, and do Sudoku puzzles—all activities that, like purchasing Swedish furniture, involve considerable unnecessary effort. The first marathon you run may be motivated by a desire to improve your health or by a Mallory-esque desire to find out what’s on the other side. But the second one is likely fueled by something else.

Inzlicht and his colleagues posed the Effort Paradox to make sense of this odd tendency: Sometimes we value experiences and outcomes (and coffee tables) precisely because they require effort, not in spite of that fact. Inzlicht’s aim was not just to name the phenomenon, but to offer some explanations for why we find both physical and cognitive effort so satisfying.

Broadly, the possibilities he suggests fall into two different buckets: whether the satisfaction comes more from the rewards of hard effort or more from the hard effort itself. In the former camp, one explanation is that rewards obtained from difficult tasks seem extra sweet because of the sharp contrast between the unpleasantness of working hard and the joy of achievement. Another is, basically, self-delusion: If you do something hard without a commensurate payoff, you experience an unpleasant disconnect that you resolve by persuading yourself that the outcome was valuable after all. If I worked so hard to get this, I must really like it, you tell yourself. (Self-delusion might make sense in humans, but is less convincing in other species. Researchers have trained starlings to fly various distances to obtain identical color-coded treats, and found that the birds end up liking the color of treats they had to fly farthest for. A similar effect even shows up in locusts, which aren’t known for their powers of introspection.)

Alternatively, a third theory assumes that people learn over time that working hard leads to desirable outcomes, and so—like Pavlov’s dogs drooling at the sound of his bell—you eventually begin to value effort itself. Beyond the explanations in Inzlicht’s paper, there are other reasons that effort might function as its own reward. For example, an emerging cognitive theory called predictive processing suggests that doing hard things gives us access to new information about both ourselves and the world, an experience that our brains are wired to find pleasurable. The theory remains speculative and its implications are still being debated, but one takeaway when it comes to effort is that if you buy a coffee table, you’ve got a coffee table; if you assemble one, you also gain knowledge not only about how coffee tables are put together, but about your own capabilities.

[Read: The myth of ‘I’m bad at math’]

Whatever the mechanism, studies of children at play suggest that the Effort Paradox isn’t limited to a subset of masochistic grinders. One preprint study that hasn’t been published yet in a scientific journal has found that, to maximize their fun, kids will opt for harder challenges even if it means they’ll fail more, living up to the philosopher Bernard Suits’s famous definition of games as “the voluntary attempt to overcome unnecessary obstacles.” The play literature offers numerous overlapping reasons that kids and adults alike might prefer hard mode, according to Harvard’s Elizabeth Bonawitz: exploration, mastery, autonomy, social connection, aesthetic experience—and even meaning, famously tricky though it is to define.

Inzlicht’s latest experiments support this idea that exerting effort increases feelings of meaning and purpose—a finding that undoubtedly rings true to the non-finishers at Comrades. Fortunately, a precise articulation of the meaning of life isn’t required to explore whether effort contributes to it. “If you ask people whether something is meaningful, they can answer,” Inzlicht says, “but they use their own internal rubric to figure out what that means.” As I’ve reported in The New York Times, Inzlicht and two of his colleagues, Aidan Campbell and Joanne Chung, developed a 10-item Meaningfulness-of-Effort scale that asks people how strongly they agree with statements such as “When I push myself, what I’m doing feels important” and “Doing my best gives me a clear purpose in life.” The scale, which the researchers introduced in a preprint study in 2022, captures differences not in whether people exert effort, but in how they view that effort. “You can imagine that some people are willing to work hard, but go about it from a sense of duty and responsibility,” Inzlicht told me for my Times story. “But other people—call them ‘joyful workers’—this is what they live for. This is what gives them purpose. This is what makes them feel important. This is what helps them make the world make sense.”

The existence of “joyful workers” suggests that, even if the Effort Paradox applies to everyone, it doesn’t apply equally. Where you sit on the Meaningfulness-of-Effort scale probably reflects a changeable mix of nature and nurture. Some people will naturally be drawn to hard effort more than others, the research implies, but people also seemingly can learn to value effort more.  Inzlicht and his colleagues found that people who score highly tend to report greater levels of job and life satisfaction; they make more money and have higher-status jobs; they’re happier (or in more technical terms, have greater subjective well-being). Those findings remain true even when you control for other constructs, such as conscientiousness, which is one of the “Big Five” personality traits that psychologists use to classify people. There has been lots of debate in recent years over whether popular concepts such as “grit” are just new names for old ideas. Meaningfulness of effort is a subcomponent of conscientiousness, Inzlicht says, but it has distinct explanatory power. Willingness to exert effort is important, but how you feel about that effort also seems to matter.

The magazine story I was reporting at the Comrades Marathon was about the ultimate limits of endurance, and what struck me then was how finishing runners, no matter how tired they seemed, would accelerate as soon as the crowd began counting down—evidence, I figured, of the mind’s role in determining physical limits. But my other lasting impression was of the stark delineation between success and failure, and the importance that runners and spectators alike attached to it. The woman next to me turned away rather than watch the final countdown. “I cried last year,” she explained. “It’s just too much to watch.” When you line up at the start of Comrades, you know there’s a very real chance that you won’t finish, despite the months or years of training that you’ve put in. On that day in 2010, as is the case pretty much every year, more than 1,000 runners who started the race didn’t make it to the finish within 12 hours.

It’s not that people love failure. But without the possibility of failing, success is stripped of its meaning and sweetness. The pioneering 19th-century German psychologist Wilhelm Wundt posited an “upside-down U” relationship between stimulus and subjective response: the more intense a stimulus, the more you like it … until, beyond a certain point, you start liking it less. This Wundt curve is invoked to explain why we like art and music that’s complex but not too complex, why video games are most engaging if they deliver an “optimal challenge” that’s neither too easy nor too hard, and why flow states require a task that’s just within your capabilities. The most satisfying challenge, in other words, is neither the hardest nor the easiest.

That’s why Comrades has so many different medals, each with its own time threshold: Everyone needs a goal that’s attainable but not a slam dunk. The Effort Paradox and the allure of optimal challenge don’t mean that you need to turn life into a constant and never-ending struggle, dialing up the difficulty every time you’re in danger of mastering something. But neither should you shy away from toil and trouble, Adam Smith’s reservations notwithstanding. As Inzlicht told me previously, exerting effort “seems to be the key route, maybe the only route, by which you can fulfill certain needs, like the needs for competence and mastery and maybe even self-understanding. You can’t get those without pushing yourself.”

This article has been adapted from Alex Hutchinson’s forthcoming book, The Explorer’s Gene.

Making America healthy again, it seems, starts with a double cheeseburger and fries. Earlier this month, Health Secretary Robert F. Kennedy Jr. visited a Steak ’n Shake in Florida and shared a meal with Fox News’s Sean Hannity. The setting was no accident: Kennedy has praised the fast-food chain for switching its cooking oil from seed oil, which he falsely claims causes illness, to beef tallow. “People are raving about these french fries,” Kennedy said after eating one, before commending other restaurants that fry with beef tallow: Popeyes, Buffalo Wild Wings, Outback Steakhouse.

To put it another way, if you order fries at Steak ’n Shake, cauliflower wings at Buffalo Wild Wings, or the Bloomin’ Onion at Outback, your food will be cooked in cow fat. For more than a decade, cutting down on meat and other animal products has been idealized as a healthier, more ethical way to eat. Guidelines such as “Eat Food. Not Too Much. Mostly Plants” may have disproportionately appealed to liberals in big cities, but the meat backlash has been unavoidable across the United States. The Obama administration passed a law to limit meat in school lunches; more recently, meat alternatives such as Impossible Burger and Beyond Meat have flooded grocery-store shelves, and fast-food giants are even serving them up in burgers and nuggets. It all heralded a future that seemed more tempeh than tomahawk steak: “Could this be the beginning of the end of meat?” wrote The New York Times in 2022.

Now the goal of eating less meat has lost its appeal. A convergence of cultural and nutritional shifts, supercharged by the return of the noted hamburger-lover President Donald Trump, has thrust meat back to the center of the American plate. It’s not just MAGA bros and MAHA moms who resist plant-based eating. A wide swath of the U.S. seems to be sending a clear message: Nobody should feel bad about eating meat.

Many people are relieved to hear it. Despite all of the attention on why people should eat less meat—climate change, health, animal welfare—Americans have kept consuming more and more of it. From 2014 to 2024, annual per capita meat consumption rose by nearly 28 pounds, the equivalent of roughly 100 chicken breasts. One way to make sense of this “meat paradox,” as the ethicist Peter Singer branded it in The Atlantic in 2023, is that there is a misalignment between how people want to eat and the way they actually do. The thought of suffering cows releasing methane bombs into the atmosphere pains me, but I love a medium-rare porterhouse.

[Read: The meat paradox]

Indeed, lots of people who self-identify as plant-eaters don’t really eat that way, Glynn Tonsor, a professor of agricultural economics at Kansas State University, told me. He runs the national Monthly Meat Demand Monitor, which asks survey respondents to self-declare their diets and then report what they ate the day before. “The number that tell me they’re vegan or vegetarian—the true number is about half that,” Tonsor said. In some years, the misalignment is even more glaring: In 2023, 7.9 percent of people who filled out the survey self-declared as vegan or vegetarian, but only 1.8 percent actually ate that way consistently. (The survey is partly funded by the meat industry.)

That dissonance is a function of how eating less meat has been wrapped in a conscientious and moral sheen. As I wrote last year, labeling items as “plant-based” has become so symbolic of health and goodness that it has been used to sell virtually anything, edible or not. The campaign against meat hasn’t just disappeared, of course. Go to any major grocery store, and you’ll still see plenty of shrink-wrapped Impossible Burgers.

But of late, the food landscape is starting to resemble a meatopia. Sweetgreen, a chain that rose to prominence by serving salads that appealed to aspirationally plant-based eaters, now runs ads spotlighting its “protein plates” piled with steak, chicken, and salmon. Dried meat sticks—think Slim Jims—are the fastest-growing snack category nationwide. Fast-food chains including McDonald’s and Carl’s Jr. have ditched their alternative-meat options.

[Read: Meat trimmings are a health food now]

There are a lot of different reasons for this meat renaissance: America has become obsessed with consuming more protein, a fad boosted by the growing numbers of people on GLP-1 drugs seeking out protein-rich diets. Plant-based meat once seemed to be on a path to becoming a dinner staple, but its popularity is in free fall due to concerns about its cost, taste, and healthfulness.

The embrace of meat isn’t just about food, but also about what meat represents: tradition, strength, dominance, muscles—values championed by the right. (There’s a reason that “soy boy” is a common pejorative to describe insufficiently masculine liberals.) Conservatives have long sought to turn meat into a front in the culture wars, even suggesting that Democrats “want to take away your hamburgers.” Last year, Florida Governor Ron DeSantis issued a preemptive ban on the sale of lab-grown meat in his state, describing it as part of “the global elite’s plan to force the world to eat meat grown in a petri dish, or bugs.”

Trump’s reelection has bolstered the cause. The rise of meat-eating is part of the larger wave of right-wing influence on American culture. “Woke”—DEI, caring about the climate, eating plant-based—is out. Tradition, at least one specific version of it, is in. Last week, The New Yorker announced the “Revenge of the American Steakhouse,” which, to some, signals a “restoration of the proper order.” Efforts on the right to reestablish conventional gender norms create an environment for gendered eating habits to thrive. Men have long eaten more meat than women; half the nation’s beef is consumed by just 12 percent of the population, most of them men. Research shows that men who subscribe to traditional gender norms tend to eat more beef and chicken.

[Read: Americans stopped cooking with tallow for a reason]

Some of the most vocal support for the meat-forward lifestyle emanates from the so-called manosphere, a right-leaning internet subculture best known for men promoting different ways to become manlier. It is popular among the young men who voted for Trump in large numbers. Meat’s ascendance “coincides with the rise of the masculine influencers,” Timothy Caulfield, a professor at the University of Alberta who studies male health trends, told me. Many of the manosphere’s main characters frame meat-eating as an antidote to the left’s “attack on masculinity,” a recurring right-wing talking point.

Tucker Carlson’s documentary The End of Men calls on men to eat organ meat and raw eggs to boost their testosterone levels. (Little scientific evidence exists to support this.) Last year, Elon Musk appeared on Joe Rogan’s podcast and suggested that the climate impacts of industrial meat are overblown: “You can totally eat as much meat as you want,” he said. Both Musk and Rogan have promoted the all-meat “carnivore diet.” Other influencers encourage more extreme behaviors, such as eating raw beef testicles for a testosterone boost.

All of this is happening amid confusion about what it even means to eat well. The prevailing view among the medical and scientific community has not changed: Reducing consumption of red and processed meats is better for human and planetary health. But as pro-meat figures such as Kennedy and Trump challenge those views—not to mention the institutions that support them—the problems with meat-eating no longer seem as clear-cut.

[Read: The Jordan Peterson all-meat diet]

Perhaps the decline of plant-based eating was inevitable. Awareness of meat-eating’s many consequences first entered the public consciousness in the late 2000s, after the release of documentaries such as Food, Inc. and books such as The Omnivore’s Dilemma. But the backlash to meat may have taken off for a different reason, Bill Winders, a sociologist of food at Georgia Tech, told me: The Great Recession made meat more expensive. Nearly two decades later, the idea of a meatless future seems quaint. Knowing the reasons you should eat less meat goes only so far. I feel guilty eating steak tartare, but it’s still my favorite dish. The commonality of this experience can feel like a free pass. As Singer, the ethicist, puts it: “Most people can easily continue doing something they believe is wrong as long as they have plenty of company.” Now no one has to keep up the charade.

Photographs by Elliott Verdier

In March 2009, after a long night on duty at the hospital, Emmeline Lagrange took a deep breath and prepared to place a devastating phone call. Lagrange, a neurologist, had diagnosed a 42-year-old woman with amyotrophic lateral sclerosis, or ALS. The woman lived in a small village in the French Alps, an hour and a half drive away from Lagrange’s office in Grenoble Alpes University Hospital. Because ALS is rare, Lagrange expected that the patient’s general practitioner, Valerie Foucault, had never seen a case before.

Snow fell outside Lagrange’s window as she got ready to describe how ALS inevitably paralyzes and kills its victims. But to her surprise, as soon as she shared the diagnosis, Foucault responded, “I know this disease very well, because she is the fourth in my village.”

ALS, also known as Lou Gehrig’s disease, occurs in roughly two to three people out of every 100,000 in Europe. (The rate is slightly higher in the United States.) But every so often, hot spots emerge. Elevated ALS rates have been observed around a lagoon in France, surrounding a lake in New Hampshire, within a single apartment building in Montreal, and on the eastern—but not western—flank of Italy’s Mount Etna. Such patterns have confounded scientists, who have spent 150 years searching for what causes the disease. Much of the recent research has focused on the genetics of ALS, but clusters provocatively suggest that environmental factors have a leading role. And each new cluster offers scientists a rare chance to clarify what those environmental influences may be—if they can study it fast enough. Many clusters fade away as mysteriously as they once appeared.

After the call, Lagrange was uneasy; she had a hunch about how much work lay ahead of her. For the next decade, she and a team of scientists investigated the cluster in the Alps, which eventually grew to include 16 people—a total 10 times higher than the area’s small population should have produced. Even during that first call, when Lagrange knew about only four cases of ALS, she felt dazed by the implications, and by Foucault’s desperate plea for help. If something in the village was behind the disturbing numbers, Foucault had no idea what it was. “She was really upset,” Lagrange remembers. “She said to me, ‘This is impossible; you must stop this.’”

For some people, the trouble begins in the throat. As their muscles waste, swallowing liquids becomes a strenuous activity. Others may first notice difficulty moving an arm or a leg. “Every day, we see that they lose something,” Foucault said of her patients. “You lose a finger, or you lose your laugh.” Eventually, enough motor neurons in the brain or spinal cord die that people simply cannot breathe. Lou Gehrig died two years after his diagnosis, when he was just 37. Stephen Hawking, an anomaly, lived with ALS until he was 76.

Five to 10 percent of people with ALS have a family member with the disease. In the 2000s, advancements in DNA sequencing led to a swell of genetic research that found that about two-thirds of those familial cases are connected to a handful of genetic mutations. But only one in 10 cases of ALS in which patients have no family history of the disease can be connected to genetic abnormalities. “What we have to then explain is how, in the absence of genetic mutation, you get to the same destination,” Neil Schneider, the director of Columbia’s Eleanor and Lou Gehrig ALS Center, told me.

Scientists have come up with several hypotheses for how ALS develops, each more complicated and harder to study than genetics alone. One suggests that ALS is caused by a combination of genetic disposition and environmental exposures throughout a lifetime. Another suggests that the disease develops after one person receives six cumulative “hits,” which can be genetic mutations, exposures to toxins, and perhaps even lifestyle factors such as smoking.

Each time a cluster appears, researchers have tried to pin down the exact environmental hazards, professions, and activities that might be linked to it. After World War II, a neurodegenerative disease that looked just like ALS—though some patients also showed features of Parkinson’s and dementia—surged in Guam, predominantly among the native Chamorro people. “Imagine walking into a village where 25 percent of the people are dying from ALS,” says Paul Alan Cox, an ethnobotanist who studied the outbreak. “It was like an Agatha Christie novel: Who’s the murderer?”

Early research tried to pin the deaths on an unlikely culprit: the highly toxic cycad plant and its seeds, which locals ground into flour to make tortillas. Cox and his colleagues hypothesize that human cells mistake a compound called BMAA found in the plant for another amino acid, leading to misfolded proteins in the brain. Peter Spencer, an environmental neuroscientist at Oregon Health & Science University, has argued for a different explanation: The body converts cycasin, a compound also found in the plant’s seeds, into a toxic chemical that can cause DNA damage and, eventually, neurodegeneration. Each theory faced its own criticism, and a consensus was never reached—except for perhaps an overarching tacit agreement that the environment was somehow integral to the story. By the end of the 20th century, the Guam cluster had all but vanished.

Genetic mutations are precise; the world is messy. This is partly why ALS research still focuses on genes, Evelyn Talbott, an environmental epidemiologist at the University of Pittsburgh, told me. It’s also why clusters, muddled as they might be, are so valuable: They give scientists the chance to find what’s lurking in the mess.

Montchavin was a mining town until 1886, when the mine closed, leaving the village largely deserted. In 1973, it was connected to a larger network of winter-tourism destinations in the Alps. On a sunny December afternoon, the week before ski season officially began, I met Foucault outside of the church in the center of Bellentre, a town of 900 whose borders include Montchavin and neighboring villages. The mountains loomed over us, not yet capped with much snow, as she greeted me in a puffer coat. She led me briskly up a steep hill, chatting in a mix of French and English, until we arrived at her home, which she occasionally uses as an office to see patients.

Foucault made us a pot of black tea, then set down a notepad of scrawled diagnoses and death dates on the table beside her. The first person Foucault knew with ALS lived a stone’s throw from where we were sitting, in a house down the hill; he had been diagnosed in 1991. The second case was a ski instructor, Daniel, who lived in Montchavin and had a chalet near Les Coches, a ski village five minutes up a switchback road by car. Daniel, whose family requested that I use only his first name for medical privacy, had told Foucault in 2000 that he was having trouble speaking, so she’d sent him to a larynx specialist. When the specialist found nothing wrong with his throat, Daniel was referred to a neurologist in Grenoble, who diagnosed him with ALS.

In 2005, after Foucault heard that the husband of one of her general-medicine patients had been diagnosed with ALS, she called her father, a heart doctor in Normandy. “It’s not normal,” he told her. A few years later, she saw one of her patients, the 42-year-old woman, in the village center with her arm hanging limp from her body. Even before the woman received her ALS diagnosis from Lagrange, Foucault suspected the worst.

After her call with Foucault, Lagrange assembled a team of neurologists and collaborators from the French government to search for an environmental spark that might have set off the cluster in Montchavin. They tested for heavy metals in the drinking water, toxins in the soil, and pollutants in the air. When the village was turned into a ski destination in the 1970s, builders had repurposed wood from old train cars to build garden beds—so the team checked the environment for creosote, a chemical used in the manufacture of those train cars. They screened for compounds from an artificial snow used in the ’80s. They checked gardens, wells, and even the brain of one deceased ALS patient. Years passed, and nothing significant was found.

The day after I had tea with Foucault, I visited Lagrange at the hospital. Her voice faltered as she ruffled through the piles of papers from their investigation on her desk. She’d cared for most of Montchavin’s ALS patients from their diagnosis to death. She worked in Montchavin on the weekends and took her family vacations there. “I felt responsible for them,” she said. “People were telling me, This is genetic. They all live together; they must be cousins. I knew it was not so.” Lagrange’s team had tested the genomes of 12 people in the Montchavin cluster, and none had mutations that were associated with ALS. Nor did any of the patients have parents, grandparents, or great-grandparents with ALS.

But their lives did overlap in other meaningful ways. The first Montchavin cases worked together as ski instructors and had chalets in a wooded patch of land called L’Orgère, up the mountain. Many of them hiked together; others simply enjoyed spending time in nature. “We thought they must have something in common, something that they would eat or drink,” Lagrange told me, sitting in her desk chair in a white lab coat and thick brown-framed glasses. She handed me a daunting packet: a questionnaire she’d developed for the ALS patients, their families, and hundreds of people without the disease who lived in the area. The survey, which took about three hours to complete, asked about lifestyle, eating habits, hobbies, jobs, everywhere they had lived, and more. It revealed that the ALS patients consistently ate three foods that the controls didn’t: game, dandelion greens, and wild mushrooms.

Lagrange’s team didn’t immediately suspect the mushrooms. But Spencer, the environmental neuroscientist in Oregon, did after he saw one of Lagrange’s colleagues present on the Montchavin cluster at a 2017 conference. Having researched the role of the cycad seed in the Guam cluster, Spencer knew that some mushrooms contain toxins that can powerfully affect the nervous system.

Spencer joined the research group, and in 2018, he accompanied Lagrange to Montchavin to distribute more surveys and conduct in-person interviews about the victims’ and other locals’ diets— the pair had particular interest in people’s mushroom consumption. From the responses, the team learned that the ALS patients were not the only mushroom foragers in town, but they shared an affinity for a particular species that local interviewees without ALS said they never touched: the false morel.

A false morel looks like a brain that has been left out in the sun. Its cap is a shriveled mass of brown folds, darker than the caramel hue of the true morel. One species, Gyromitra esculenta, grew around Montchavin and was especially abundant near the ski chalets in spring if enough snow had fallen the preceding winter. France has a rich foraging culture, and the false morel was just one of many species mushroom enthusiasts in Montchavin might pick up to sauté with butter and herbs. The false morel contains gyromitrin, a toxin that sickens some number of foragers around the world every year; half of the ALS victims in Montchavin reported a time when they had acute mushroom poisoning. And according to Spencer, the human body may also metabolize gyromitrin into a compound that, over time, might lead to similar DNA damage as cycad seeds.

No one can yet say that the false morel caused ALS in Montchavin; Lagrange plans to test the mushroom or its toxin in animal models to help establish whether it leads to neurodegeneration. Nevertheless, Spencer feels that the connection between Montchavin and Guam is profound—that the cluster in the Alps is another indication that environmental triggers can be strongly associated with neurodegenerative disease.

Once you start looking, the sheer variety of potential environmental catalysts for ALS becomes overwhelming: pesticides, heavy metals, air pollution, bodies of water with cyanobacteria blooms. Military service is associated with higher ALS risk, as is being a professional football player, a painter, a farmer, or a mechanic. Because of how wide-ranging these findings are, some researchers doubt the utility of environmental research for people with ALS. Maybe the causes are too varied to add up to a meaningful story about ALS, and each leads to clusters in a different way. Or perhaps, Jeffrey Rothstein, a Johns Hopkins University School of Medicine neurologist, told me, a cluster means nothing; it’s simply a rare statistical aberration. “Patients are always looking for some reason why they have such a terrible disease,” he said. “There’s been plenty of blips like this over time in ALS, and each one has its own little thought of what’s causing it, and they’ve all gone nowhere.”

“A lot of people look askew to the idea that there are clusters,” Eva Feldman, a neurologist at the University of Michigan, told me. But she sees evidence of clusters all the time in her practice. Once, she saw three women with ALS who’d grown up within blocks of one another in the Grand Rapids area. Her research has shown an association between ALS and organic pollutants, particularly pesticides. Feldman thinks that the importance and scope of environmental triggers for ALS can be pinpointed only by investigating clusters more thoroughly. To start, she told me, doctors should be required to disclose every case of ALS to state officials. Feldman is also planning what she says is the first-ever prospective study on ALS in the U.S., following 4,000 healthy production workers in Michigan. She believes that clusters have significance and that because doctors can’t do much to stop ALS once it starts, “we would be naive to throw out any new ideas” about how to prevent it from occurring in the first place.

Even for the people whose lives were upended by the Montchavin cluster, the idea that mushrooms could be linked to such suffering can be difficult to accept. Those who ate them knew the mushrooms could cause unpleasant side effects, but they believed that cooking them removed most of the danger. When I asked Claude Houbart, whose father, Gilles, died in 2019, about his mushroom habits, she called her mother and put her on speakerphone. Claude’s mother said she knew Gilles ate false morels, but she never cooked them for herself or the family—simply because she didn’t want to risk upset stomachs.

Daniel, Foucault’s second ALS patient, also kept his foraging hobby out of the home. He never ate false morels in front of his wife, Brigitte, though she knew he picked wild mushrooms with friends. “I am a bit reluctant when it comes to mushrooms; I would have never cooked them,” Brigitte told me, sitting at her kitchen table in Montchavin, surrounded by photos of Daniel and their now-adult children. After Daniel died in 2008, Brigitte and her family spread his ashes in the woods where he’d spent so much of his time. “He didn’t want a tomb like everyone else,” she said. “When we walk in the forest, we think about him.”

Hervé Fino, a retired vacation-company manager who has lived in the Alps for 41 years, learned to forage in Montchavin. Bundled in a plaid overcoat inside a wood-paneled rental chalet, Fino recalled local foragers telling him that false morels were edible as long as they were well cooked, but he never ate the mushrooms himself, fearing their digestive effects. Fino told me about one of his friends who regularly gathered false morels, and once made himself a false-morel omelet when his wife was out of town. “He was sick for two days, very ill,” Fino said. Later, that same friend was diagnosed with ALS. He died by suicide.

In a gruff voice, Fino speculated about what besides the mushroom might have caused the disease. His friend fell into an icy-cold brook two days before he was diagnosed—“Perhaps the shock triggered the disease?” Another woman owned a failing restaurant next to the cable car—maybe the stress had something to do with it. He shrugged his shoulders. Those events didn’t seem right either, not momentous enough to so dramatically alter someone’s fate. Maybe no single explanation ever will. Claude told me she understands why people are skeptical. “Eating a mushroom and then dying in that way?” she said. “Come on.”

Before leaving Montchavin, I walked through L’Orgère, the area where the first ALS patients had their ski cabins. The windows were dark, and below, the village of Montchavin was mostly empty before the tourist season began. Clumps of snow started to fall, hopefully enough to satisfy the skiers. Recent winters in the French Alps have been warm and dry—not the right conditions for false morels. “There are no more Gyromitra in Montchavin,” Lagrange said. In her view, Montchavin has joined the ranks of ALS clusters come and gone; no one has been diagnosed there since 2019, and it’s been longer since Lagrange’s team has turned up a fresh false-morel specimen.

Even so, on my walk, I couldn’t help but scan for mushrooms, nor could I shake the feeling that my surroundings were not as benign as I’d once believed. Fino said he still keeps an eye out for false morels too. He would never pluck them from the ground to bring home, and yet, he hasn’t stopped looking. One day in 2023, after he parked his car near a ski lift, his gaze caught on a lumpy spot near his feet. Two dark-brown mushrooms stuck out of the damp soil.