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Tag: medical professionals

  • FSU freshman linebacker is in intensive care after shooting, school says

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    FSU freshman linebacker Ethan Pritchard is in intensive care after shooting, school says

    Updated: 9:59 AM PDT Sep 1, 2025

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    A Florida State linebacker is in critical but stable condition after being shot while visiting family, the Seminoles said Monday.Ethan Pritchard, a 6-foot-2, 224-pound freshman from Sanford, was in intensive care at a Tallahassee-area hospital. He was shot Sunday evening while inside a vehicle outside apartments in Havana, according to the Gadsden County Sheriff’s Office.“The Pritchard family is thankful for the support from so many people, as well as the care from first responders and medical professionals, and asks that their privacy be respected at this time,” FSU said in a statement. “Further updates will be provided as they are available.”Pritchard did not play in Florida State’s season opener, a 31-17 victory Saturday over No. 8 Alabama in Tallahassee.

    TALLAHASSEE, Fla. —

    A Florida State linebacker is in critical but stable condition after being shot while visiting family, the Seminoles said Monday.

    Ethan Pritchard, a 6-foot-2, 224-pound freshman from Sanford, was in intensive care at a Tallahassee-area hospital. He was shot Sunday evening while inside a vehicle outside apartments in Havana, according to the Gadsden County Sheriff’s Office.

    “The Pritchard family is thankful for the support from so many people, as well as the care from first responders and medical professionals, and asks that their privacy be respected at this time,” FSU said in a statement. “Further updates will be provided as they are available.”

    Pritchard did not play in Florida State’s season opener, a 31-17 victory Saturday over No. 8 Alabama in Tallahassee.

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  • Anti-abortion Conservatives’ First Target If Trump Returns

    Anti-abortion Conservatives’ First Target If Trump Returns

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    The Supreme Court’s upcoming decision about the most common pharmaceutical used for medication abortions may be just the beginning of the political battle over the drug.

    Earlier this month, the Supreme Court agreed to hear an appeal of lower-court rulings that would severely reduce access to mifepristone. The Court’s acceptance of the case marked a crucial juncture in the legal maneuvering over the medication.

    But however the high court rules, pressure is mounting inside the GOP coalition for the next Republican president to broadly use executive authority at the Food and Drug Administration and the Justice Department to limit access to mifepristone and to reduce what abortion opponents call “chemical abortion.”

    “Chemical abortion will be front and center and presented front and center by the pro-life movement if there is a Republican president,” Kristan Hawkins, the president of Students for Life of America, told me. “There is going to be a lot of action we want to see taken.”

    The possibility of new executive-branch restrictions on abortion drugs, which are now used in a majority of all U.S. abortions, underscores the stakes over abortion in the 2024 presidential election. Even if Donald Trump or another Republican wins back the White House next year, they might not have enough votes in Congress to pass a nationwide ban on the practice. But through executive action, the next GOP president could unilaterally retrench access to mifepristone in every state, however the Supreme Court decides the current case. Multiple former FDA officials and advocates on both sides of the issue told me that through regulatory and legal actions by the FDA, the Justice Department, or both, the next Republican president could impose all the limits on access to mifepristone that anti-abortion groups are seeking in the lawsuit now before the high court.

    Read: Abortion is inflaming the GOP’s biggest electoral problem

    “The FDA is a highly regulated space, so there are a lot of hoops they would have to jump through,” Jeremy Sharp, the FDA’s deputy commissioner for policy planning, legislation, and analysis during part of Barack Obama’s second term, told me. “But if they got a commissioner in there that was ideologically motivated, and if they changed the staff leadership, then there’s a lot they could do before anybody could get in the way and stop them.”

    The growing Republican focus on using executive-branch authority against abortion access marks a new front in the broader political confrontation over reproductive rights. While Roe v. Wade was in place, the social conservative movement was focused overwhelmingly on trying to reverse the nationwide right to abortion and “wasn’t zoned in on this issue” of federal regulatory authority over abortion drugs, Hawkins noted.

    Medication abortion involves two drugs: mifepristone followed by misoprostol (which is also used to prevent stomach ulcers). From 2000 through 2022, almost 6 million women in the U.S. used mifepristone to end a pregnancy, according to the FDA. In all those cases of women using the drug, the agency has recorded only 32 deaths (including for reasons unrelated to the drug) and a little more than 1,000 hospitalizations. The risk of major complications has been less than half of 1 percent.

    Neither of the past two Republican presidents acted against the drugs administratively or even faced sustained pressure from social conservatives to do so. The FDA initially approved mifepristone for use in abortion during the final months of Bill Clinton’s presidency, in 2000. But during Republican President George W. Bush’s two terms, the FDA made no effort to rescind that approval.

    During Obama’s final year, the FDA significantly loosened the restrictions on usage of the drug. (Among other things, the agency reduced the number of physician visits required to obtain the drugs from three to one; increased from seven to 10 the number of weeks into a pregnancy the drugs could be used; and permitted other medical professionals besides physicians to prescribe the drugs if they received certification.) During Trump’s four years, the FDA did not move to undo any of those decisions.

    But the right’s focus on abortion drugs has significantly increased since Trump left office. According to Hawkins, one reason is that the COVID pandemic crystallized awareness of how many abortions are performed remotely with the drugs, rather than in medical settings. Even more important may have been the decision by the six GOP-appointed Supreme Court justices in 2022 to overturn Roe. By fulfilling the top goal of anti-abortion activists, that decision both freed them to concentrate on other issues and raised their ambitions.

    In one measure of that growing zeal, social conservative groups and Republican elected officials have pushed back much harder against Joe Biden’s attempts to expand access to mifepristone than they did against Obama’s moves. Under Biden, the FDA has eliminated the requirement for an in-person visit to obtain mifepristone; instead it allows patients to get a prescription for the drug through a telehealth visit and then receive it through the mail. The FDA under Biden has also allowed pharmacies that receive certification to dispense the drug.

    As I wrote earlier this year, the paradox is that Biden’s rules will be felt almost entirely in the states where abortion remains legal. Almost all red states have passed laws that still require medical professionals to be present when the drugs are administered, and, even though the FDA allows their use through 10 weeks of pregnancy, the drugs cannot be prescribed in violation of state time limits (or absolute bans) on abortion.

    Shortly after last November’s midterm election, an alliance of conservative groups sued in federal court to overturn not only Biden’s measures to ease access to the drug but also the changes approved in 2016 under Obama, and even the decision under Clinton in 2000 to approve the drug at all.

    ​​Read: Why Trump might just roll to the presidential nomination

    In April 2023, Judge Matthew J. Kacsmaryk, a Trump appointee and abortion opponent, ruled almost entirely for the plaintiffs, striking down the Biden and Obama regulations and the FDA’s original approval of the drug. In August, a panel of three Republican-appointed judges on the Fifth Circuit Court of Appeals upheld Kacsmaryk’s ruling overturning the Obama and Biden regulatory changes. But the panel, by 2–1, ruled that it was too late to challenge the drug’s original approval.

    The Supreme Court along the way blocked the implementation of any of these rulings until it reached a final decision in the case, so mifepristone has remained available. In its announcement earlier this month, the Court agreed to hear appeals to the Fifth Circuit decision erasing the Obama and Biden administrations’ regulatory changes but declined to reconsider the circuit court’s upholding of mifepristone’s original approval. Those choices have raised hopes among abortion-rights activists that the Court appears inclined to reverse the lower court’s ruling and preserve the existing FDA rules. “We are very hopeful this is an indicator the Court is not inclined to rule broadly on medication abortion and they are concerned about the reasoning of the decisions [so far],” said Rabia Muqaddam, a senior staff attorney at the Center for Reproductive Rights, a group that supports legal abortion.

    But the legal process has shown that even a Supreme Court decision maintaining the current rules is unlikely to end the fight over mifepristone. The reason is that the proceedings have demonstrated much broader support in the GOP than previously for executive-branch action against the drug.

    For instance, 124 Republicans in the House of Representatives and 23 GOP senators have submitted a brief to the Supreme Court urging it to affirm the Fifth Circuit’s ruling overturning the Obama and Biden actions on mifepristone. “By approving and then deregulating chemical abortion drugs, the FDA failed to follow Congress’ statutorily prescribed drug approval process and subverted Congress’ critical public policy interests in upholding patient welfare,” the Republican legislators wrote. Republican attorneys general from 21 states submitted a brief with similar arguments in support of the decision reversing the Obama and Biden administrations’ regulatory actions.

    In another measure, a large majority of House Republicans voted last summer to reverse the FDA’s decisions under Biden that expanded access to the drugs. Though the legislation failed when about two dozen moderates voted against it, the predominant support in the GOP conference reflected the kind of political pressure the next Republican president could face to pursue the same goals through FDA regulatory action.

    Simultaneously, conservatives have signaled another line of attack they want the next GOP president to pursue against medication abortions. In late 2022, the Justice Department’s Office of Legal Counsel issued an opinion that the Postal Service could deliver the drugs without violating the 19th-century Comstock Act, which bars use of the mail “to corrupt the public morals.” That interpretation, the opinion argued, was in line with multiple decisions by federal courts spanning decades that the law barred the mailing of only materials used in illegal abortions.

    Conservatives are arguing that the next Republican administration should reverse that OLC ruling and declare that the Comstock Act bars the mailing of medications used in any abortions.

    The fact that both Kacsmaryk and Circuit Court Judge James Ho, also appointed by Trump, endorsed that view in their rulings on mifepristone this year offers one measure of the receptivity to this idea in conservative legal circles. As telling was a letter sent last spring by nine GOP senators to major drug-store chains warning that they could be held in violation of the Comstock Act not only if they ship abortion drugs to consumers but even if they use the mail or other freight carriers to deliver the drugs to their own stores.

    Trump and his leading rivals for the 2024 GOP nomination, Florida Governor Ron DeSantis and former South Carolina Governor Nikki Haley, have avoided explicit commitments to act against medication abortions. But all of these efforts are indications of the pressure they would face to do so if elected. Hawkins said that anti-abortion groups have chosen not to press the candidates for specific plans on regulatory steps against mifepristone but instead intend to closely monitor the views of potential appointments by the next GOP president, the same tactic signaled by the senators in their letter to drug-store chains. “It will make for probably the most contentious fight ever over who is nominated and confirmed” for the key positions at the FDA and other relevant agencies, Hawkins told me.

    Stephen Ostroff, who served as acting FDA commissioner under both Obama and Trump, told me that future Republican appointees would likely find more success in reconsidering the regulations governing access to mifepristone than in reopening the approval of the drug altogether this long after the original approval. Even reconsidering the access rules, he predicts, would likely ignite intense conflict between political appointees and career scientific staff.

    “I think it would be challenging for a commissioner to come in and push the scientific reviewers and other scientific staff to do things they don’t think are appropriate to do,” Ostroff told me. “You’d have to do a lot of housecleaning in order to be able to accomplish that.” But, he added, “I’m not saying it is impossible.”

    In fact, political appointees under presidents of both parties have at times overruled FDA decisions. Kathleen Sebelius, the Health and Human Services secretary for Obama, blocked an FDA ruling allowing the over-the-counter sale of emergency contraception to girls younger than 17; the Biden White House has delayed an FDA decision to ban the sale of menthol cigarettes, amid concerns about a possible backlash among Black voters.

    Many legal and regulatory experts closely following the issue believe that a Republican president’s first target would be the FDA’s decision to allow mifepristone to be prescribed remotely and shipped by mail or dispensed in pharmacies. To build support for action against mifepristone, a new FDA commissioner also might compel drug companies to launch new studies about the drug’s safety or require the agency’s staff to reexamine the evidence despite the minimal number of adverse consequences over the years, Sharp told me.

    Faced with continuing signs of voter backlash on efforts to restrict abortion, any Republican president might think twice before moving aggressively against mifepristone. And any future attempt to limit the drug—through either FDA regulations or a revised Justice Department opinion about the Comstock Act—would face an uncertain outcome at the Supreme Court, however the Court decides the current case. The one certainty for the next GOP president is that the pressure from social conservatives for new regulatory and legal action against mifepristone will be vastly greater than it was the most recent two times Republicans controlled the executive branch. “We want all the tools in the tool kit being used to protect mothers and children from these drugs,” Hawkins told me. Amid such demands, the gulf between the FDA’s future decisions about the drug under a Republican or Democratic president may become much wider than it has been since mifepristone first became available, more than two decades ago.

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    Ronald Brownstein

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  • It’s the Best Time in History to Have a Migraine

    It’s the Best Time in History to Have a Migraine

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    Here is a straightforward, clinical description of a migraine: intense throbbing headache, nausea, vomiting, and sensitivity to light and noise, lasting for hours or days.

    And here is a fuller, more honest picture: an intense, throbbing sense of annoyance as the pain around my eye blooms. Wondering what the trigger was this time. Popping my beloved Excedrin—a combination of acetaminophen, aspirin, and caffeine—and hoping it has a chance to percolate in my system before I start vomiting. There’s the drawing of the curtains, the curling up in bed, the dash to the toilet to puke my guts out. I am not a religious person, but during my worst migraines, I have whimpered at the universe, my hands jammed into the side of my skull, and begged it for relief.

    That probably sounds melodramatic, but listen: Migraines are miserable. They’re miserable for about 40 million Americans, most of them women, though the precise symptoms and their severity vary across sufferers. For about a quarter, myself included, the onset is sometimes preceded by an aura, a short-lived phase that can include blind spots, tingling, numbness, and language problems. (These can resemble stroke symptoms, and you should seek immediate medical care if you experience them and don’t have a history of migraines.) Many experience a final phase known as the “migraine hangover,” which consists of fatigue, trouble concentrating, and dizziness after the worst pain has passed.

    These days, migraine sufferers are caught in a bit of a paradox. In some ways, their situation looks bright (but, please, not too bright): More treatments are available now than ever before—though still no cure—and researchers are learning more about what triggers a migraine, with occasionally surprising results. “It’s a really exciting time in headache medicine,” Mia Minen, a neurologist and the chief of headache research at NYU Langone, told me.

    And yet the enthusiasm within the medical community doesn’t seem to align with conditions on the ground (which, by the way, is a nice, cool place to press your cheek during an attack). Migraine sufferers cancel plans and feel guilty about it. They struggle to parent. They call in sick, and if they can’t, they move through the work day like zombies. In a 2019 survey, about 30 percent of participants with episodic migraines—attacks that occur on fewer than 15 days a month—said that the disorder had negatively affected their careers. About 58 percent with chronic migraines—attacks that occur more often than that—said the same.

    Migraines are still misunderstood, including by the people who deal with them. “We still don’t have a full understanding of exactly what causes migraine, and why some people suffer more than others do,” Elizabeth Loder, a headache clinician at Brigham and Women’s Hospital in Boston and a neurology professor at Harvard Medical School, told me. Despite scientific progress, awareness campaigns, and frequent reminders that migraines are a neurological disorder and not “just headaches,” too often, they’re not treated with the medical care they require. Yes, it’s the best time in history to have migraines. It just doesn’t feel that way.

    Humans have had migraines probably for as long as we’ve had brains. As the historian Katherine Foxhall argues in her 2019 book, Migraine: A History, “much evidence suggests migraine had been taken seriously in both medical and lay literature throughout the classical, medieval, and early modern periods as a serious disorder requiring prompt and sustained treatment.” It was only in the 18th century, when medical professionals lumped migraines in with other “nervous disorders” such as hysteria, that they “came to be seen as characteristic of sensitivity, femininity, overwork, and moral and personal failure.” The association persisted, Stephen Silberstein, the director of the headache center at Thomas Jefferson University, told me. When Silberstein began his training in the 1960s, “nobody talked about migraine in medical school,” he told me. Physicians still believed that migraines were “the disorder of neurotic women.”

    The first drug treatments for migraines appeared in the 1920s, and they were discovered somewhat by accident: Doctors found that ergotamine, a drug used to stimulate contractions in childbirth and control postpartum bleeding, also sometimes relieved migraines. (It could also cause pain, muscle weakness, and, in high enough doses, gangrene; some later studies have found that it’s little better than placebo.) The drug constricted blood vessels in the brain, so doctors assumed that migraine was a vascular disorder, the symptoms brought on by changes in blood flow and inflamed vessels. In the 1960s, a physician studying the effectiveness of a heart medication noticed that one of his participants experienced migraine attacks less frequently than he used to; a decade later, the FDA approved that class of drug, called beta-blockers, as a preventative treatment. (In the decades since their approval, studies have found that beta-blockers helped about a quarter of participants reduce their monthly migraine days by half, compared with 4 percent of people taking a placebo.)

    Things changed in the 1990s, when triptans, a new class of drugs made specifically for migraines, became available. Triptans were often more effective and faster at easing migraine pain than earlier drugs, though the effects didn’t last as long. Around the same time, genetic studies revealed that migraines are often hereditary. Meanwhile, new brain-imaging technology allowed researchers to observe migraines in real time. It showed that, although blood vessels could become inflamed during an attack and contribute to pain, migraine isn’t strictly a vascular disorder. The chaos comes from within the nervous system: Scientists’ best understanding is that the trigeminal nerve, which provides sensation in the face, becomes stimulated, which triggers cells in the brain to release neurotransmitters that produce headache pain. How exactly the nerve gets perturbed remains unclear.

    Read: Doctors suddenly got way better at treating eczema

    The past few years of migraine medicine have felt like the ’90s all over again. In 2018, the FDA approved a monthly injection that prevents migraines by regulating CGRP, a neurotransmitter that’s known to spike during attacks. For 40 percent of people with chronic migraines participating in one clinical trial, the treatment cut their monthly migraine days in half. Similar remedies followed; Lady Gaga, a longtime migraine sufferer, appeared in a commercial this summer to endorse Pfizer’s CGRP-blocking pill, and the company’s CEO launched a migraine-awareness campaign earlier this month. Solid evidence has emerged that cognitive behavioral therapy and relaxation techniques tailored to migraine can be helpful as part of a larger treatment plan. The FDA has cleared several wearable devices designed to curb migraines by delivering mild electric stimulation. Last year, the agency decided to speed up the development of a device that deploys gentle puffs of air into a user’s ears.

    Researchers are still, to this day, making progress on identifying migraine triggers. Experts agree on many common triggers, such as skipping meals, getting too little sleep, getting too much sleep, stress, the comedown from stress, and hormone changes linked to menstruation or menopause. They’re also realizing that some long-held beliefs about triggers might be entirely wrong. MSG, for example, probably doesn’t induce migraines; changes in air pressure don’t do so as often as many people who have migraines seem to think.

    Some supposed triggers might actually be signs of an oncoming migraine. The majority of migraine sufferers experience something called the premonitory phase, which can last for several hours or days before headache pain sets in and has its own set of symptoms, including food cravings. We migraine sufferers are frequently advised to steer clear of chocolate, but if you’re craving a Snickers bar, the migraine may already be coming whether or not you eat it. “When you get a headache, you blame it on the chocolate—even though the migraine made you eat the chocolate,” Silberstein said. “I always tell people, if they think they’re getting a migraine, eat a bar of chocolate … It’s more likely to do good than harm.”

    Silberstein’s advice sounded like absolute blasphemy to me. Virtually every migraine FAQ page in existence had led me to believe that chocolate is a ruthless trigger. Maybe I shouldn’t have been relying on general guidelines on the internet, even though they came from reputable medical institutions. But I had turned to the internet because I didn’t think my migraines necessitated a visit to a specialist. According to the American Migraine Foundation, the majority of people who have migraines never consult a doctor to receive proper diagnosis and treatment.

    Recent surveys have shown that people are reluctant to see a professional for a variety of reasons: They think their migraine isn’t bad enough, they worry that their symptoms won’t be taken seriously, or they can’t afford the care. The hot new preventative medications in particular “are extremely expensive, putting them out of reach of some of the people who might benefit the most,” Loder said. In 2018, when the much-heralded CGRP blocker hit the market, the journalist Libby Watson, a longtime migraine patient herself, interviewed migraine sufferers who described themselves as low-income, and found that most of them hadn’t heard of the new drug at all.

    Even if you can get them, the treatments don’t guarantee relief. One recent study showed that triptans might not relieve pain—or might not be tolerable—for up to 40 percent of migraine patients. Experts are still trying to figure out why the same treatment might work wonderfully for one person, and not at all for another, Minen said. Some patients find that drugs eventually stop working for them, or that they come with side effects bad enough to discourage continued use, such as dizziness and still more nausea.

    Read: Why has a useless cold medication been allowed on shelves for years?

    These problems remain unsolved in part because of a dearth of research. Like other conditions that mostly afflict women, migraines receive “much less funding in proportion to the burden they exert on the U.S. population,” Nature’s Kerri Smith reported in May. And many doctors are unaware of the research that exists: A 2021 study of non-migraine physicians found that 43 percent had “poor knowledge” of the condition’s symptoms and management, and just 21 percent were aware of targeted treatments. Specialists tend to have a much better knowledge base, but good luck seeing one: America has too few headache doctors, and there are significantly fewer of them in rural areas.

    Many migraine sufferers rely on over-the-counter pain relievers, myself included. Years ago, my primary-care physician prescribed me a triptan nasal spray. It produced a terrible aftertaste and worsened the throbbing in my head, and I gave up on it after only a couple of uses. Back to Excedrin I went, not realizing—until reporting this story—that nonprescription medications can cause even more attacks if you overuse them. Some people get by on home remedies that the journalist Katy Schneider, who battles migraines herself, has described as a “medicine cabinet of curiosities”; one person she interviewed shotguns an ice-cold Coke when she feels the symptoms coming on.

    When triptans and tricks fail, some people try to prevent migraines by avoiding triggers. Don’t stay up too late or sleep in. Don’t drink red wine. Put down that Snickers. This strategy of avoidance “interferes with the quality of their life in many cases,” Loder said, and probably doesn’t stop the attacks. And drawing associations is a futile exercise because most migraines are brought on by more than one trigger, Minen said. People can end up internalizing the 18th-century idea that migraines are a personal failure rather than a disease—and migraine FAQs perpetuate that myth by advising patients to live an ascetic life.

    Read: Adult ADHD is the Wild West of psychiatry

    The misconceptions surrounding migraine, combined with its invisibility, make the disorder easy to stigmatize. The authors of a 2021 review found that, compared with epilepsy, a neurological disorder with a physical manifestation, “people with chronic migraine are viewed as less trustworthy, less likely to try their hardest, and more likely to malinger.” Perhaps as a result, many feel pressure to grind through it. Migraines are estimated to account for 16 percent of presenteeism—being on the job but not operating at full capacity—in the American workforce.

    Before reporting this story, I had never thought to call my migraines a neurological disorder, let alone a “debilitating” one, as Minen and other experts do. Migraines were just this thing that I’ve lived with for more than a decade, and had accepted as an unfortunate part of my existence. Just my Excedrin and me, together forever, barreling through the wasted days. The attacks began in my late teens, around the same time that my childhood epilepsy mysteriously vanished. I never got an explanation for my seizures, despite years of daily medication and countless EEGs. A neurologist once told me that the two might be related, but he couldn’t say for sure; research has shown that people who have epilepsy are more likely to experience migraines. And so I assumed that I just had a slightly broken brain, prone to electrochemical misfiring.

    All of the experts I spoke with were politely horrified when I told them about my migraines and how I manage them. I promised them that I’d make an appointment with a specialist. Before we got off the phone, Silberstein gave me a tip. “Put a cold pack on your neck and then a heating pad, 15 minutes alternating,” he said. “It’ll take the migraine away.” He told me that researchers are developing a device that does this, but the old-fashioned way can be effective too. At this point, my cabinet of curiosities is falling apart, its hinges squeaking from overuse. I’m already rethinking my entire migraine life, so I may as well try this too.

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    Marina Koren

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  • What Fatigue Really Means

    What Fatigue Really Means

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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    Ed Yong

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  • Elizabeth Holmes Isn’t Fooling Anyone

    Elizabeth Holmes Isn’t Fooling Anyone

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    Elizabeth Holmes isn’t fooling anyone. Well, almost anyone.

    The convicted fraudster and founder of the defunct medical start-up Theranos, is waiting to begin an 11-year sentence in federal prison. She received this punishment for misleading investors about her lab-in-a-box technology, which she claimed could run hundreds of tests on a few drops of blood. In reality, when Theranos’s Edison device wasn’t exploding, it was delivering unreliable results to frightened patients. Holmes’s fall from grace—she was once the youngest self-made woman billionaire—has been described over and over again. But there’s still a little more blood left in this stone.

    On Sunday, The New York Times ran a profile of Holmes—which included the first interview she’s given since 2016. The author, Amy Chozick, suggests that she was charmed by Holmes, the devoted family woman. Chozick writes that Holmes is “gentle and charismatic,” and “didn’t seem like a hero or a villain. She seemed, like most people, somewhere in between.” This flattering or at least ambivalent tone was not well received. The Axios editor Sam Baker picked the article apart on Twitter. The emergency-medicine physician Jeremy Faust called it “credulous drivel.” Journalists and doctors alike argued that the Times had erred by helping Holmes rehabilitate her image.

    When mistakes happen in the health-care system, doctors try to trace their origin to broken processes. Errors are addressed at the system—not individual—level: If a patient receives an incorrect dose of a medicine, for instance, the blame doesn’t necessarily fall on the nurse who administered it or the physician who prescribed it. The entire drug-delivery process, from pharmacy to bedside, is carefully inspected for unsafe practices. The media—and their content-delivery process—have been going through a similar postmortem over the Theranos debacle. Before John Carreyrou broke the bad news about the company at The Wall Street Journal, reporters were happy to write flattering profiles of Holmes with only the most rudimentary caveats. Even the Journal praised her before it damned her. But the Times’ latest visit to Holmesville suggests that this unsafe practice is still in place.

    Read: Theranos and COVID-19 testing are mirror-image cautionary tales

    As a pathologist—a doctor who specializes in laboratory testing—I’ve been following the Theranos story since the beginning. Holmes’s rise and fall is the most glamorous scandal to hit my field in some time: Most are more body-parts-in-the-back-of-a-pickup than celebrity-stuffed financial crimes. Just last week, I was giving a grand-rounds talk about Theranos. Loopholes in laboratory regulation and widespread ignorance of how blood testing works had caused medical professionals and the public to fall for diagnostic scams, I told the academics in attendance. Toward the end of the lecture, I posed a question: Have the media learned their lesson after enabling Holmes’s charade?

    Much has changed about science reporting in the years since Holmes’s disgrace. I’ve watched the media’s discussion of novel health technologies grow more nuanced and leery. Major news outlets now go out of their way to emphasize the precariousness of early study findings. I’ve been getting more calls from journalists who seek a skeptical perspective on some new lab test or scientific finding. But there are cracks in the media’s armor. The weakest component is the headline: You can still declare all manner of decisive breakthroughs, as long as you append “scientists find” to the title. Another persistent problem is that medical controversies are reported out study by study. Back-and-forth articles about contested areas offer ready-made drama but little clarity. (Masks help prevent COVID; wait, they don’t work at all; never mind, now they do again.) When doctors evaluate the latest research, we recognize that some methods are more reliable than others. Wisdom comes from learning which results to ignore, and scientific consensus changes slowly.

    But journalists’ most stubborn instinct—the one they share with Holmes—is to lean into a good story. It’s the human side of science that attracts readers. Every technical advance must be contextualized with a tale of suffering or triumph. Holmes knew this as well as anyone. She hardly dwelled on how her devices worked—she couldn’t, because they didn’t. Instead, she repeatedly told the world about her fear of needles and of losing loved ones to diseases that might have been caught earlier by a convenient blood test. Of course reporters were taken in. The next entrepreneur to come along and tell a tale like that may also get a sympathetic hearing in the press.

    Holmes understood that almost everyone—journalists, investors, patients, doctors—can be swayed by a pat narrative. She’s still trying to get ahead by telling stories. In offering herself up to the Times as a reformed idealist and a wonderful mother, Holmes adds to a story that was started by her partner, Billy Evans. As part of Holmes’s sentencing proceedings last fall, Evans wrote a multipage letter to the judge pleading for mercy, which was accompanied by numerous photos of Holmes posing with animals and children. “She is gullible, overly trusting, and simply naive,” Evans wrote about one of the great corporate hucksters of our era.

    Journalists are still telling stories about her too, for better or for worse. Holmes is not naive, nor are most readers of The New York Times. While last weekend’s “a hero or a villain” coverage may be said to have betrayed the patients who were harmed by her inaccurate blood tests, and the memory of a Theranos employee who died by suicide, it is also just another entry in the expanded universe of Holmes-themed entertainment. There are books and podcasts and feature-length documentaries. A TV miniseries about Holmes has a score of 89 percent on Rotten Tomatoes. (“Addictively engrossing!” “Consistently entertaining!”) Surely some of those who now bemoan the Times’ friendly treatment have consumed this material for less-than-academic reasons.

    The prosaic details of a convicted cheat’s domestic life aren’t really news, but they are interesting—because the character of Elizabeth Holmes is interesting. So, too, are her continued efforts to spin a narrative of who she is. But with such well-trodden ground, the irony is built right in. You know that Holmes is a scammer. I know it. On some level, The New York Times seems to know it too; the article runs through her crimes and even quotes a friend of Holmes’s who says she isn’t to be trusted. This isn’t character rehabilitation; it’s content. We’re all waiting to see what Liz gets up to next. Have the media learned their lesson? The real test will arrive when the next scientific scammer comes along, and the one after that—when their narrative is still intact, and their fraud hasn’t yet been revealed. At that point, the system for preventing errors will have to do its work.

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    Benjamin Mazer

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  • The COVID Emergency Is Ending. Is Vaccine Outreach Over Too?

    The COVID Emergency Is Ending. Is Vaccine Outreach Over Too?

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    Stephen B. Thomas, the director of the Center for Health Equity at the University of Maryland, considers himself an eternal optimist. When he reflects on the devastating pandemic that has been raging for the past three years, he chooses to focus less on what the world has lost and more on what it has gained: potent antiviral drugs, powerful vaccines, and, most important, unprecedented collaborations among clinicians, academics, and community leaders that helped get those lifesaving resources to many of the people who needed them most. But when Thomas, whose efforts during the pandemic helped transform more than 1,000 Black barbershops and salons into COVID-vaccine clinics, looks ahead to the next few months, he worries that momentum will start to fizzle out—or, even worse, that it will go into reverse.

    This week, the Biden administration announced that it would allow the public-health-emergency declaration over COVID-19 to expire in May—a transition that’s expected to put shots, treatments, tests, and other types of care more out of reach of millions of Americans, especially those who are uninsured. The move has been a long time coming, but for community leaders such as Thomas, whose vaccine-outreach project, Shots at the Shop, has depended on emergency funds and White House support, the transition could mean the imperilment of a local infrastructure that he and his colleagues have been building for years. It shouldn’t have been inevitable, he told me, that community vaccination efforts would end up on the chopping block. “A silver lining of the pandemic was the realization that hyperlocal strategies work,” he said. “Now we’re seeing the erosion of that.”

    I called Thomas this week to discuss how the emergency declaration allowed his team to mobilize resources for outreach efforts—and what may happen in the coming months as the nation attempts to pivot back to normalcy.

    Our conversation has been edited for clarity and length.

    Katherine J. Wu: Tell me about the genesis of Shots at the Shop.

    Stephen B. Thomas: We started our work with barbershops and beauty salons in 2014. It’s called HAIR: Health Advocates In-Reach and Research. Our focus was on colorectal-cancer screening. We brought medical professionals—gastroenterologists and others—into the shop, recognizing that Black people in particular were dying from colon cancer at rates that were just unacceptable but were potentially preventable with early diagnosis and appropriate screening.

    Now, if I can talk to you about colonoscopy, I could probably talk to you about anything. In 2019, we held a national health conference for barbers and stylists. They all came from around the country to talk about different areas of health and chronic disease: prostate cancer, breast cancer, others. We brought them all together to talk about how we can address health disparities and get more agency and visibility to this new frontline workforce.

    When the pandemic hit, all the plans that came out of the national conference were on hold. But we continued our efforts in the barbershops. We started a Zoom town hall. And we started seeing misinformation and disinformation about the pandemic being disseminated in our shops, and there were no countermeasures.

    We got picked up on the national media, and then we got the endorsement of the White House. And that’s when we launched Shots at the Shop. We had 1,000 shops signed up in I’d say less than 90 days.

    Wu: Why do you think Shots at the Shop was so successful? What was the network doing differently from other vaccine-outreach efforts that spoke directly to Black and brown communities?

    Thomas: If you came to any of our clinics, it didn’t feel like you were coming into a clinic or a hospital. It felt like you were coming to a family reunion. We had a DJ spinning music. We had catered food. We had a festive environment. Some people showed up hesitant, and some of them left hesitant but fascinated. We didn’t have to change their worldview. But we treated them with dignity and respect. We weren’t telling them they’re stupid and don’t understand science.

    And the model worked. It worked so well that even the health professionals were extremely pleased, because now all they had to do was show up with the vaccine, and the arms were ready for needles.

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

    The barbers and stylists saw themselves as doing health-related things anyway. They had always seen themselves as doing more than just cutting hair. No self-respecting Black barber is going to say, “We’ll get you in and out in 10 minutes.” It doesn’t matter how much hair you have: You’re gonna be in there for half a day.

    Wu: How big of a difference do you think your network’s outreach efforts made in narrowing the racial gaps in COVID vaccination?

    Thomas: Attribution is always difficult, and success has many mothers. So I will say this to you: I have no doubt that we made a huge difference. With a disease like COVID, you can’t afford to have any pocket unprotected, and we were vaccinating people who would otherwise have never been vaccinated. We were dealing with people at the “hell no” wall.

    We were also vaccinating people who were homeless. They were treated with dignity and respect. At some of our shops, we did a coat drive and a shoe drive. And we had dentists providing us with oral-health supplies: toothbrush, floss, paste, and other things. It made a huge difference. When you meet people where they are, you’ve got to meet all their needs.

    Wu: How big of a difference did the emergency declaration, and the freeing-up of resources, tools, and funds, make for your team’s outreach efforts?

    Thomas: Even with all the work I’ve been doing in the barber shop since 2014, the pandemic got us our first grant from the state. Money flowed. We had resources to go beyond the typical mechanisms. I was able to secure thousands of KN95 masks and distribute them to shops. Same thing with rapid tests. We even sent them Corsi-Rosenthal boxes, a DIY filtration system to clean up indoor air.

    Without the emergency declaration, we would still be in the desert screaming for help. The emergency declaration made it possible to get resources through nontraditional channels, and we were doing things that the other systems—the hospital system, the local health department—couldn’t do. We extended their reach to populations that have historically been underserved and distrustful.

    Wu: The public-health-emergency declaration hasn’t yet expired. What signs of trouble are you seeing right now?

    Thomas: The bridge between the barbershops and the clinical side has been shut down in almost all places, including here in Maryland. I go to the shop and they say to me, “Dr. T, when are we going to have the boosters here?” Then I call my clinical partners, who deliver the shots. Some won’t even answer my phone calls. And when they do, they say, “Oh, we don’t do pop-ups anymore. We don’t do community-outreach clinics anymore, because the grant money’s gone. The staff we hired during the pandemic, they use the pandemic funding—they’re gone.” But people are here; they want the booster. And my clinical partners say, “Send them down to a pharmacy.” Nobody wants to go to a pharmacy.

    Read: The COVID strategy America hasn’t really tried

    You can’t see me, so you can’t see the smoke still coming out of my ears. But it hurts. We got them to trust. If you abandon the community now, it will simply reinforce the idea that they don’t matter.

    Wu: What is the response to this from the communities you’re talking to?

    Thomas: It’s “I told you so, they didn’t care about us. I told you, they would leave us with all these other underlying conditions.” You know, it shouldn’t take a pandemic to build trust. But if we lose it now, it will be very, very difficult to build back.

    We built a bridge. It worked. Why would you dismantle it? Because that’s exactly what’s happening right now. The very infrastructure we created to close the racial gaps in vaccine acceptance is being dismantled. It’s totally unacceptable.

    Wu: The emergency declaration was always going to end at some point. Did it have to play out like this?

    Thomas: I don’t think so. If you talk to the hospital administrators, they’ll tell you the emergency declaration and the money allowed them to add outreach. And when the money went away, they went back to business as usual. Even though the outreach proved you could actually do a better job. And the misinformation and the disinformation campaign hasn’t stopped. Why would you go back to what doesn’t work?

    Wu: What is your team planning for the short and long term, with limited resources?

    Thomas: As long as Shots at the Shop can connect clinical partners to access vaccines, we will definitely keep that going.

    Nobody wants to go back to normal. So many of our barbers and stylists feel like they’re on their own. I’m doing my best to supply them with KN95 masks and rapid tests. We have kept the conversation going on our every-other-week Zoom town hall. We just launched a podcast. We put out some of our stories in the form of a graphic novel, The Barbershop Storybook. And we’re trying to launch a national association for barbers and stylists, called Barbers and Stylists United for Health.

    The pandemic resulted in a mobilization of innovation, a recognition of the intelligence at the community level, the recognition that you need to culturally tailor your strategy. We need to keep those relationships intact. Because this is not the last time we’re going to see a pandemic even in our lifetime. I’m doing my best to knock on doors to continue to put our proposals out there. Hopefully, people will realize that reaching Black and Hispanic communities is worth sustaining.

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    Katherine J. Wu

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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    Ed Yong

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