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  • Four Lessons Republicans Must Learn Before 2024

    Four Lessons Republicans Must Learn Before 2024

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    The Republican Party swaggered into Tuesday’s midterm elections with full confidence that it would clobber President Joe Biden and his Democratic Party, capitalizing on voters’ concerns over inflation and the economy to retake majorities in both chambers of Congress. The question, party officials believed, was one only of scale: Would it be a red wave, or a red tsunami?

    The answer, it turns out, is neither.

    As of this morning, Republicans had yet to secure a majority in either the House or the Senate. Across the country, Democrats won races that many in the party expected to lose. Millions of votes are still to be counted, particularly in western states, but this much is clear: Even if Republicans eke out narrow congressional majorities, 2022 will be remembered as a triumph for Democrats, easily the best midterm cycle for an incumbent president’s party since 2002, when the country rallied around George W. Bush and his GOP in the aftermath of the September 11 terrorist attacks.

    Given the tailwinds they rode into Election Day—a fragile economic outlook, an unpopular president, a pervasive sense that our democracy is dysfunctional—Republicans spent yesterday trying to make sense of how things went so wrong. There was a particular focus on Michigan, Pennsylvania, and Wisconsin, three battleground states that went from red to blue on Election Day 2020, and states where Democrats won major victories on Tuesday.

    Based on my reporting throughout the year, as well as data from Tuesday’s exit polling and conversations with Republican officials in the immediate aftermath of Election Day, here are four lessons I believe the party must learn before the next election in 2024.

    1. Democratic turnout is going to boom in the post-Dobbs era.

    For 50 years, Republicans raged against the Supreme Court decision in Roe v. Wade that established a constitutional right to an abortion, arguing that the ruling should be struck down and abortion policies should be determined by individual states. When it finally happened—when Politico in early May published a leaked draft of the majority opinion in Dobbs v. Jackson Women’s Health Organization striking down Roe v. Wade—I warned the evangelical leader Russell Moore on his podcast that Republicans, and especially conservative Christians, were about to deal with some devastating unintended consequences.

    Up until the 2022 election, most voters had engaged with the abortion issue as an every-four-years, very-top-of-the-ticket decision. Presidents appoint Supreme Court justices, after all, and only a Supreme Court ruling could fundamentally change abortion policies in the country. (This was essential to Donald Trump’s victory in 2016: Nearly a quarter of his voters said the Supreme Court was their top issue in the election, after he’d promised to appoint “pro-life judges.”) Given that abortion rights were protected by Roe, the voters who identified abortion as their top priority always skewed Republican, and they were primarily mobilized by presidential campaigns and the prospect of Supreme Court vacancies.

    We have now entered a different political universe.

    More than a quarter of all voters named abortion as their top priority in this election. That number would be astonishing in any cycle, much less in a midterm campaign being waged against a backdrop of historic inflation and a looming recession. (The only issue of greater salience to voters overall—and not by much—was the economy, which 31 percent named as their top priority.) Even more surprising was the gap in partisan enthusiasm: Among the 27 percent of voters who prioritized abortion in this election, 76 percent supported Democratic candidates, according to exit polling, while just 23 percent backed Republicans.

    This is a direct result of the Dobbs ruling, which left individual states scrambling to figure out their own abortion regulations. With Republicans pushing a menu of restrictive measures across the nation, Democrats running for office at every level—Congress, state legislature, governor, attorney general—suddenly had ammunition to mobilize a party base that was, until that time, looking complacent. (When Republican Glenn Youngkin won the governor’s race in deep-blue Virginia last year, only 8 percent of voters named abortion as their top priority.) At the same time, Dobbs gave Democrats a tool to reach moderates and independents, particularly suburban women, who’d rejected the Republican Party in 2020 but were beginning to drift back toward the GOP because of concerns about inflation and crime.

    Democrats I spoke with throughout the summer and fall were hopeful that the abortion issue would be sufficient to prevent a Republican rout. It did that and much, much more. The Dobbs effect on this election is almost impossible to exaggerate. All five states that featured a ballot referendum on questions of abortion saw the pro-choice side win. (This includes Kentucky and Montana, states that President Joe Biden lost by 26 points and 16 points, respectively.) In those states alone, dozens of Democrats, from the top of the ballot to the bottom, received a potentially race-deciding boost from the abortion referendum. Even in the 45 states where abortion wasn’t literally on the ballot, it was clearly the issue that carried the day for a host of vulnerable Democrats.

    By every metric available—turnout, exit polling, individual races, and referendum results—abortion was the dominant motivator for Democrats, particularly younger Democrats, who have historically skipped midterm elections. It was also the dominant motivator for moderates and independents to stick with an unpopular president. The story of this election was that millions of voters who registered dissatisfaction with Biden and his economic policies voted for his party anyway. Why? Because they were more concerned about Republicans’ approach to abortion than Democrats’ approach to inflation.

    This is very bad news for the GOP. Democrats now have a blueprint for turning out the vote in a punishing political environment. In each of the two midterm elections under President Barack Obama, Democrats hemorrhaged congressional and state legislative seats because the party lacked a base-turnout mechanism—not to mention a persuasion tactic—to compensate for voters’ concerns over a sluggish economy. Politics is a copycat business. Now that Democrats have found a winning formula, you can expect to see entire field programs, messaging campaigns, microtargeting exercises, and ballot-initiative drives built around abortion access.

    A winning issue today is not necessarily a winning issue tomorrow. Abortion rights will rise and fall in terms of resonance, depending on the place, the party in control, and the policies that govern the issue locally. We’ve seen Democrats overplay their hand on abortion in the past, as in 2014, when Republicans flipped a U.S. Senate seat because the Democratic incumbent, Mark Udall, campaigned so myopically on abortion rights that even the liberal Denver Post editorial board ridiculed him as “Senator Uterus.” If Democrats rely too much on the issue—or, maybe the greater temptation, if they use their legislative power to advance abortion policies that are just as unpopular with moderates and independents as some of what Republicans campaigned on this cycle—their advantage could evaporate quickly.

    Still, the “Senator Uterus” episode came in the pre-Dobbs era, back when Americans still viewed the Supreme Court as the most immediate arbiter of abortion rights, and local candidates didn’t have nearly the reason (or incentive) to engage with the issue. This is now the post-Dobbs era. Voters who care about abortion are thinking less about Supreme Court justices and more about state legislators. The political advantage, at least for now, belongs to a Democratic Party that just weaponized the issue to turn out its base in a major and unexpected way.

    2. Bad candidates are an incurable (and fast-spreading) cancer.

    In Michigan, “Prop 3,” the ballot proposal enshrining abortion rights into the state constitution, drove enormous voter participation. Democrats were the clear beneficiary: They won all three statewide campaigns as well as the state’s most competitive congressional races. But Democrats did even more damage at the local level, ambushing Republicans in a number of off-the-radar local contests and winning back control of both state legislative chambers for the first time since 1983.

    But if you ask Republicans in the state, Prop 3 wasn’t the biggest contributor to the down-ballot massacre. Instead, they blame the terrible GOP candidates at the top of the ticket.

    Whereas Republicans in other states nominated one or perhaps even two far-right candidates to run in marquee statewide races, Michigan Republicans went for the trifecta. Tudor Dixon, the gubernatorial nominee, was a political novice who had made extreme statements about abortion and gun control in addition to casting doubts on Trump’s 2020 defeat. Matt DePerno, the nominee for attorney general, was best known for leading a crusade to investigate and overturn Biden’s 2020 victory in the state. Kristen Karamo, the nominee for secretary of state, was a like-minded conspiracy theorist who manifestly knew nothing about the way Michigan’s elections are administered, and even less about the other duties of the job she was seeking.

    “You just can’t ignore the question of candidate quality,” Jason Roe, who ran Republican Tom Barrett’s campaign against Elissa Slotkin, one of the nation’s premier congressional contests, in Michigan’s Seventh District, told me. “We had a fundraising disadvantage, we had Prop 3 to overcome, but candidate quality—that was our biggest headwind. Tom ran about seven points ahead of the statewide ticket. I’m not sure what else he’s supposed to do.”

    The same pattern was visible in different parts of the country. In Pennsylvania, Democrats seized back control of the state House chamber for the first time in more than a decade. How? Two words: Doug Mastriano.

    In the campaign to become Pennsylvania’s next governor—what was once expected to be one of the nation’s tightest races—Mastriano, the GOP nominee, proved particularly unpalatable. It wasn’t just Mehmet Oz, the Republican nominee for U.S. Senate in that state, who stayed away; most GOP state lawmakers, even those who shared some of Mastriano’s fringe worldview as it pertains to election legitimacy or Christian nationalism, kept their distance.

    But it hardly mattered. The smoldering crater left by Mastriano’s implosion (he trailed by nearly 14 points as of yesterday evening) swallowed up Republicans all around him. Not only did Democrats improbably win back control of the state House; they also won all three of the state’s contested congressional races.

    Time and again on Tuesday, bad candidates sabotaged both their own chances of victory and also the electoral prospects of their fellow partisans on the ticket. And for most of these bad candidates, a common quality stood out: their views on the legitimacy of our elections.

    3. Voters prefer “out of touch”  to “out of their mind.”

    For Republicans, a central charge against Democrats throughout 2022 has been that Biden and his party are out of touch with ordinary Americans. A distilled version of the argument went like this: Democrats, the party of social and cultural elites, can’t relate to the economic pain being felt by millions of working people.

    That message penetrated—to a point.

    According to exit polls, 20 percent of voters said inflation has caused their families “severe hardship” over the past year. Among those respondents, 71 percent supported Republicans, and 28 percent supported Democrats. This is broadly consistent with other findings in the exit polling, as well as public-opinion research we saw throughout the summer and fall, showing disapproval of Biden and his stewardship of the economy. This would seem damning for Democrats—that is, until you consider the numbers in reverse and ask the obvious question: Why did three in 10 people who said they’ve experienced “severe hardship” decide to vote for the party that controls Congress and the White House?

    The simplest explanation is that although many of these voters think Democrats are out of touch, they also think Republicans are out of their minds. And it seems they prefer the former to the latter.

    “This is what I would see in our focus groups all summer, and it makes more sense now in retrospect,” says Sarah Longwell, a Republican strategist who produced a podcast series this year narrating her sessions with undecided voters. “We would have these swing voters who would say things are going bad: inflation, crime, Biden’s doing a bad job, all of it. And then you say, ‘Okay, Gretchen Whitmer versus Tudor Dixon. Who are you voting for?’ And even though they’re pissed at Whitmer—she hasn’t fixed the roads, she did a bad job with COVID—they were voting for her. Because they all thought Dixon was crazy.”

    It was the same thing, Longwell told me, in her focus groups all over the country—but particularly in the Midwest. She said that Tony Evers, the Democratic governor of Wisconsin, kept getting the same benefit of the doubt as Whitmer: “They didn’t like a lot of his policies, but they thought Tim Michels”—his Republican challenger—“was an extremist, a Trumplike extremist.” Her conclusion: “A lot of these people wanted to vote for a Republican; they just didn’t want to vote for the individual Republican who was running.”

    For many voters, the one position that rendered a candidate unacceptable was the continued crusade against our elections system. In Pennsylvania, for instance, 34 percent of voters supported Democrats despite experiencing “severe hardship,” significantly higher than the national average. The reason: 57 percent of Pennsylvanians said they did not “trust” Mastriano to oversee the state’s elections.

    Another strategy Republicans used to portray Democrats as “out of touch” was to focus on rising crime rates in Democratic-governed cities and states. This was an unqualified success: Exit polling, both nationally and in key states, showed that clear majorities of voters believe Republicans are better suited to handle crime. In Michigan, 53 percent of voters said they trusted Dixon to deal with crime, as opposed to just 42 percent for Whitmer. But it barely made a difference in the outcome: Despite trailing by 11 points on that question, Whitmer actually won the race by 11 points. To understand why, consider that 56 percent of Michigan voters characterized Dixon as “too extreme.” Only 38 percent said the same about Whitmer.

    In the exit polls, perhaps the most provocative question was about society’s changing values relative to gender identity and sexual orientation. Half of all voters—exactly 50 percent—said those values are changing for the worse. Only 26 percent, meanwhile, said those values are changing for the better. (The remaining 24 percent did not have a strong opinion either way.) This is another data point to suggest that Democrats, by championing an ultraprogressive approach to LGBTQ issues, come across as out of touch to many Americans. And yet, even among the voters who expressed alarm over America’s values in this context, 20 percent voted for Democrats. This is a revelation: Given the ferocity of rhetoric in this campaign about drag shows, transgender athletes, and sexualized public-school curricula, one might have predicted virtually zero people would both decry the LGBTQ agenda and vote Democratic. But two in 10 voters—more than enough to tip any close election—did exactly that. Why?

    Again, the simplest explanation is probably best: Plenty of voters are worried about unchecked progressivism on the left, but they’re even more worried about unchecked extremism on the right.

    That extremism takes many forms: delegitimizing our elections system, endorsing the January 6 assault on the Capitol, cracking jokes and spreading lies about the assault on House Speaker Nancy Pelosi’s husband. And all of this extremism, which so many swing voters spurned on Tuesday, is embodied by one person: Donald Trump.

    4. Trumpism is toxic to the middle of the electorate.

    Here’s the scenario many of us were expecting on Election Day: The president, still the titular head of his party despite a growing chorus of questions about his age and competence, suffers a series of humiliating defeats that reflect the weakness of his personal brand and cast doubt on his ability to lead the party moving forward.

    And that’s precisely what happened—to the former president.

    If Tuesday felt strange—“the craziest Election Night I’ve ever seen,” as the elections-analyst Dave Wasserman tweeted—it’s because so many races revolved around someone who wasn’t running for anything. The reason that practically every first-term president in modern history has gotten pummeled in the midterms is that the opposition party typically cedes the stage and makes it all about him. The idea is to force the party in power to own everything that’s unsatisfactory about the country—its economic performance, military failures, policy misfires. It’s a time-honored tradition: Make the election a referendum on the new guy in charge.

    Until now.

    In each of the three states that saw major Democratic victories—Michigan, Pennsylvania, and Wisconsin—25 to 30 percent of voters said they had cast their vote in opposition to Trump. To reiterate: This is a quarter of the total electorate, consistently across three of the nation’s most polarized battleground states, acknowledging that they were motivated by the idea of defeating someone who wasn’t on the ballot, and who currently holds no office. It’s easy to see why they succeeded: In these states, as well as nationally, the only thing worse than Biden’s approval rating was Trump’s. In state after state, congressional district after congressional district, voters rejected the Trump-approved candidate, for many of the same reasons they rejected Trump himself two years ago.

    Looking to 2024, GOP leaders will attempt to address the missed opportunities of this election. They will, no doubt, redouble their efforts to recruit strong candidates for statewide races; they will prioritize proven winners with mainstream views on abortion and democratic norms and the other issues by which moderates and independents will assess them. Whatever success party officials might find on a case-by-case basis, they will be treating the symptoms and ignoring the sickness. The manifest reality is that Trumpism has become toxic—not just to the Never Trumpers or the RINOs or the members of the Resistance, but to the immense, restless middle of the American electorate.

    We’ve long known that Trumpism without Trump doesn’t really sell; the man himself has proved far more compelling, and far more competitive, than any of his MAGA imitators. But what we saw Tuesday wasn’t voters selectively declining certain decaffeinated versions of Trump; it was voters actively (and perhaps universally, pending the result in Arizona’s gubernatorial race) repudiating the core elements of Trump’s political being.

    This trouncing, on its own, might have done little to loosen Trump’s chokehold on American conservatism. But because it coincided with Florida Governor Ron DeSantis’s virtuoso performance—winning reelection by an astonishing 1.5 million votes; carrying by double digits Miami-Dade County, which Hillary Clinton won by 30 points; defeating his Democratic opponent by nearly 20 points statewide—there is reason to believe, for the first time in six and a half years, that the Republican Party does not belong to Donald Trump.

    “I’ll tell you why Tuesday was a bad night for Trump: Ron DeSantis now has 100 percent name ID with the Republican base. Every single Republican voter in the country knows who he is now,” says Jeff Roe, who managed Ted Cruz’s 2016 campaign and runs the nation’s largest political-consulting firm. “A lot of these people are gonna say, ‘All these other Republicans lost. This is the only guy that can win.’ That’s really bad for Trump. Republicans haven’t had a choice in a long time. Now they have a choice.”

    Trump’s intraparty critics have long complained that his brutally effective takeover of the GOP obscures his win-loss record. This is someone, after all, who earned the 2016 nomination by securing a string of plurality victories against a huge and fragmented field; who lost the popular vote to Hillary Clinton by nearly 3 million; who gave away the House in 2018 and the Senate in 2020; who lost the popular vote to Biden by 7 million and handed over the White House; and who just sabotaged the party’s chances of winning key contests in a number of battleground states.

    Earlier this week, Trump pushed back the expected launch of his 2024 presidential campaign. This was done, in part, so that he could appropriate the narrative of a grand Republican victory against Biden and the Democrats. Given his humiliating defeats, and how they’re being juxtaposed against the victories of his emerging young rival from Florida, Trump might want to move the announcement back up before a very different narrative begins to take hold.

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    Tim Alberta

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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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