Long COVID Experts and Advocates Say the Government Is Ignoring ‘the Greatest Mass-Disabling Event in Human History’

Dr. Ezekiel Emanuel is used to feeling like the only person in the country who still cares about COVID-19. He ignores the side-eye he gets for wearing an N95 mask at parties—a self-imposed policy that makes him “look odd” but kept him safe after a recent work dinner turned into a superspreader event. The oncologist, bioethicist, and professor at the University of Pennsylvania provides each of his students with an N95 and runs four HEPA air filters during lectures. He rolls down the windows when he gets in an Uber and goes hungry on planes so he can wear his mask the whole time. He’s given up one of his favorite pastimes—dining at restaurants—even now that many people don’t think twice about eating indoors. [time-brightcove not-tgx=”true”]

Emanuel, 65, takes these precautions even though he’s vaccinated and boosted and thus well protected against severe COVID-19. The acute disease doesn’t scare him much—but what could come after does. “The only thing that’s preventing me from leading a normal life is the risk that I’ll get Long COVID,” Emanuel says. “I can’t say why people aren’t [reacting like] their hair’s on fire. This is a serious, serious illness.”

Emanuel’s not totally alone. In a July Axios-Ipsos poll, 17% of people said their biggest fear related to COVID-19 is the possibility of getting Long COVID, a potentially disabling condition in which symptoms linger or emerge well after an acute infection. But at a time when the majority of U.S. adults think there’s little risk in returning to normal, mask wearers, test takers, and social distancers walk a lonely road.

Even public-health agencies seem over it. Throughout 2022, the U.S. Centers for Disease Control and Prevention (CDC) has rolled back many of its recommended COVID-19 precautions. CDC guidance no longer recommends social distancing, mask-wearing, or screening tests for most people who don’t have symptoms, and unvaccinated people don’t need to quarantine if they’re exposed to the virus. In a 60 Minutes interview that aired Sept. 18, President Joe Biden said “the pandemic is over,” even though “we still have a problem with COVID.”

The following day, chronic disease advocates protested in front of the White House, arguing that Long COVID and the related condition myalgic encephalomyelitis/chronic fatigue syndrome constitute a public-health emergency and demanding that the Biden Administration improve its public-education campaigns, financial support for patients, and research efforts.

The CDC says its COVID-19 guidance is meant to prevent “medically significant COVID-19 illness,” which includes both severe acute disease and Long COVID. The agency contends its lighter touch is warranted now that the vast majority of the U.S. population has good protection against severe disease from being vaccinated, contracting COVID-19, or both. “Our emphasis on preventing severe disease will also help prevent cases of post-COVID conditions, as post-COVID conditions are found more often in people who had severe COVID-19 illness,” Dr. Barbara Mahon, who oversees work on coronaviruses and other respiratory diseases at the CDC, said in response to questions from TIME about the agency’s Long COVID guidance.

Jason Armond—Los Angeles Times/Getty ImagesPeople wearing masks shop and work in Santee Ally in Los Angeles on July 11, 2022.

But even with high levels of population immunity, Long COVID cases continue to pile up. By the CDC’s own estimate from June, one in five U.S. adults with a known prior case of COVID-19 had symptoms of Long COVID. Having COVID-19 also raises a person’s risk of developing chronic conditions including heart disease, asthma, and diabetes, according to CDC research.

Long COVID can take many forms, including exhaustion, cognitive dysfunction, neurological issues, and chronic pain. People can develop it whether they’re young or old, sick or healthy, vaccinated or not. And while some people get better in a matter of months, recent studies and many patient experiences show symptoms can last years. There is no known cure for Long COVID, and the only way to prevent it is not to get infected at all.

That, a vocal group of experts and advocates say, is why people should resist the U.S.’ collective shrug to the unchecked spread of COVID-19. The virus may not kill or hospitalize as many people as it once did, but it still upends lives every day. Around 1.2 million people in the U.S. became disabled as a result of the virus by the end of 2021, according to the Center for American Progress, a progressive think tank. Up to 4 million people in the U.S. are out of work because of Long COVID. Specialists who treat Long COVID report months-long waitlists. And in the current “let it rip” phase of the pandemic, all of that may get worse.

“We’re in the middle of the greatest mass-disabling event in human history,” says Long COVID patient and advocate Charlie McCone. And unless people wake up to the long-term consequences of COVID-19, it is “going to continue taking folks out like fish in a barrel.”

Demetrius Freeman—The Washington Post/Getty ImagesPresident Joe Biden delivers remarks regarding COVID-19 in the South Court Auditorium at the White House on March 30, 2022.

President Joe Biden ran on a promise to defeat COVID-19. And for a while, it looked like he would deliver. In the spring and early summer of 2021, the U.S. was recording about 12,000 cases per day. Vaccines were working. Masks were coming off. Life was good.

Then Delta hit, followed by the tsunami of Omicron, and the path out of the pandemic no longer looked clear. The messaging began to shift: the U.S. would learn to live with COVID-19, rather than defeating it. We couldn’t stop all infections, but we could defang them through vaccines, boosters, and treatments like the antiviral Paxlovid. The masks could stay off, even if the virus wasn’t gone.

Many Americans welcomed the return to normalcy. But to McCone, 32, that approach is “a crime against humanity,” given what we now know about Long COVID.

McCone got sick in March 2020. COVID-19 knocked him flat. He almost went to his local emergency room because he was so short of breath, and it took weeks for his respiratory symptoms to improve. After about a month, he finally felt well enough to ride his bike. “I just fell apart,” McCone remembers. The 15-minute ride left him with unshakeable exhaustion—and a sign that this would be no ordinary recovery.

More than two years later, McCone barely leaves the house, except for medical appointments. He still has severe fatigue, chest pain, shortness of breath, and nervous system dysfunction. He can’t work because of his symptoms, and his partner has become his caretaker. His symptoms got even worse after catching COVID-19 again in September 2021, so he’s “petrified” of getting reinfected—a fear he wishes more people shared.

“We’re letting millions of Americans and people across the globe walk, unwittingly, straight into this pit,” he says.

Hannah Davis, a machine learning expert who began researching Long COVID after her own diagnosis, also got sick in March 2020. Davis has testified about Long COVID before Congress and advised federal health officials about the condition. She says those experiences have shown her that health officials understand that Long COVID is a substantial problem, and that, while vaccines reduce the risk of developing it—by some amount between 15% and 50%, studies suggest—they are not failsafe. The U.K.’s Office for National Statistics recently reported that roughly 4.5% of triple-vaccinated adults developed Long COVID after being infected by Omicron. But the government doesn’t seem to want to dwell on these scary stats, Davis says. “It really looks like it’s being hidden intentionally,” she says.

Davis believes that’s because the Biden Administration leaned heavily on vaccines as a ticket out of the pandemic and is wary of walking back that messaging now, even as fully vaccinated and boosted people contract Long COVID. A representative for the U.S. Department of Health and Human Services (HHS) did not directly respond to that allegation when asked by TIME, but emphasized the importance of vaccination and said the department is still working “to understand this new post-infectious landscape.”

Lauren Owens Lambert—ReutersLauren Nichols, who has long COVID, takes a break from work to read her blood oxygen levels and heart rate from a machine on her finger in her home in Andover, MA, on Aug. 3, 2022.

“Individuals, communities, and organizations must make decisions that create the right balance between the need to protect themselves and others from the effects of COVID-19 and the need to stay healthy in every sense of the word—such as mental health, getting an education, preventive and chronic disease care, and social interaction,” the CDC’s Mahon said in a statement.

Health officials are not doing enough to prevent transmission of the virus and help people understand its risks, says Kristin Urquiza, who founded the advocacy group Marked By COVID after her father died from the virus in 2020. “Leaders have thrown their hands up in the air and basically said, ‘You do you,’” she says.

The federal government has taken some action on Long COVID. In late 2020, Congress gave the National Institutes of Health (NIH) more than $1 billion to study it. But so far, this funding has yielded no treatments, no preventative tools, and little research that is immediately useful to patients. The NIH’s cornerstone Long COVID research project aimed to enroll 40,000 people; as of August, it had enrolled only about 8,000. That’s in large part because of the complexity and scope of the trial, according to the NIH.

Lawmakers have introduced bills meant to improve research and support for Long COVID, but they’ve reportedly stalled due to a lack of support in Congress. And in August, HHS released two highly anticipated reports on Long COVID—one describing resources available to patients, the other outlining the government’s research agenda—that were largely panned by Long COVID advocates as more symbolic than substantive.

“Many of the resources provided in the reports seem like cold comforts and temporary Band-Aids when a tourniquet and emergency surgery is needed,” Urquiza said in a statement to Rolling Stone about the reports.

The HHS representative told TIME the reports are just the beginning, and the Administration’s work on Long COVID is ongoing. For people with Long COVID, “It can feel like the world is moving on, while leaving them behind,” the spokesperson wrote in the statement. “The Administration’s message to them is that, ‘We see you, we hear you, and we are taking action to help.'”

Some Long COVID advocates and scientists have called for an initiative like Operation Warp Speed—the Trump Administration program that quickly yielded multiple effective COVID-19 vaccines—for Long COVID treatments. But the NIH hasn’t built anything of the sort, says David Putrino, a Long COVID researcher at New York’s Mount Sinai health system. Despite its $1 billion budget for Long COVID research, “There’s been no process change between how they fund things outside of a health emergency and how they’re funding things in the midst of a health crisis,” he says. “We’re still following the same grant application procedures, the administrative load is the same if not more, and they have not hired additional people to program manage the grants.” In a statement, the NIH said application review is handled by an “ample and diverse set of experts.”

Dr. Eric Topol, founder of the Scripps Research Translational Institute and a prolific parser of COVID-19 research on Twitter, says the NIH is doing good research on the underlying science of Long COVID, but he’d like to see more trials focused on treatments. “You need to do both, because we can’t wait another year or two for the biology to be better defined,” Topol says. (The NIH says it will begin treatment-focused trials this fall. Mahon says the CDC also continues to research Long COVID symptoms, prevalence, and risk factors.)

Research delays are not for lack of intriguing leads. A tremendous amount of Long COVID research has been published in the last two years, most coming out of independent laboratories, Putrino says. From this work, scientists have found multiple possible explanations for Long COVID symptoms: SARS-CoV-2 virus lingering in the body, abnormal immune system activity, reactivation of other viruses previously lying dormant, tiny blood clots throughout the body, and more. These disparate findings suggest that there may be different root causes or subtypes of Long COVID, which means all patients might not respond to the same therapy. But each one suggests a possible path to treatment worth testing sooner rather than later, Topol says.

Michael Nagle—Bloomberg/Getty ImagesA health care worker prepares a dose of the Moderna COVID-19 vaccine at the Brooklyn Children’s Museum vaccination site in New York City on June 23, 2022.

Nobody knows exactly how prevalent Long COVID is, and some researchers argue that the CDC’s estimate of one patient per five COVID-19 cases is high. But, even using more conservative prevalence estimates, the volume of infections in the U.S. means the scale of the problem is massive. About 60,000 people in the U.S. currently test positive for COVID-19 daily. Even by more modest estimates, that means the seeds for a possibly debilitating condition are planted in thousands of people every day. During just the first two years of the pandemic, at least 17 million people in Europe developed Long COVID, according to a Sept. 13 report commissioned by the World Health Organization.

“If we have millions of people being infected, we’re going to have millions of people getting Long COVID,” Emanuel says. “That’s going to be an ongoing, serious national problem that is going to weigh down the economy, weigh down the disability insurance system, and be tragic for people.”

Journalist and author Katie Hafner, 64, was one of the unlucky people to develop Long COVID after being vaccinated and boosted. She got infected in May and was left with significant fatigue and brain fog. Her Long COVID symptoms were on the milder end of the spectrum and have improved with time, but Hafner says she can still manage only a few hours of work per day and has to carefully monitor her physical and mental energy levels. Her anxiety has also escalated since getting sick.

Hafner’s husband is Dr. Robert Wachter, chair of the department of medicine at the University of California, San Francisco. Between his wife’s experience and his close monitoring of COVID-19 research, Wachter is concerned enough about Long COVID to avoid indoor dining and wear a good mask in crowded areas. For people who aren’t immersed in the research, though, “the cognitive load of doing all this three-dimensional chess [around risk calculation] is too much,” he says. “To me, the CDC hasn’t been very vigorous on Long COVID,” providing less guidance about prevention and risks than it did for acute infections.

Those risks are substantial. Wachter says he’s worried about Long COVID’s impact on the health care system—not just in already overloaded Long COVID clinics, but system-wide. “If it turns out that it markedly increases the rates of some of the biggest medical hazards we have in life”—including organ failure, heart disease, and dementia, as research currently suggests— “the toll of that over years and years will be tremendous,” Wachter says. “I don’t think [the CDC has] done a good job explaining that at all.”

The economic toll could also be massive. Up to 4 million adults in the U.S. are out of work because of Long COVID, costing the economy at least $170 billion in annual lost wages alone, according to a Brookings Institution report published in August. A Kaiser Family Foundation analysis suggests just 44% of people who worked before they got Long COVID are now fully employed, with the remainder either out of a job or working reduced hours.

Many long-haulers who are unable to work have turned to the disability system. But, anecdotally, many have had trouble getting their claims approved, either because they’re outright denied or forced to jump through hoops to prove they’re truly unable to work. A representative for the Social Security Administration said in a statement that, as of August, it had received about 38,000 applications that mention COVID-19, representing about 1% of recent claims—but since decisions are based on functional limitations, not diagnoses, it’s difficult to say how many people have sought support due to Long COVID.

Carolyn Van Houten—The Washington Post/Getty ImagesEve Efron, who has been struggling with Long COVID for nearly a year, frequently has to rest on the couch in her home in Fairfax, VA on Feb. 3, 2022.

Experts say there is more that can be done, even before new therapies are discovered or developed. To slow transmission and thus lower rates of Long COVID, Topol says the CDC should tell people to isolate for longer than five days after getting infected and campaign harder for people to get booster shots. Emanuel, meanwhile, would like to see better communication about which masks protect wearers from infection; respirators like N95s are more effective than surgical or cloth masks, but many people still walk around in droopy blue surgical masks. Public indoor spaces, like restaurants and schools, should also have enforceable requirements for ventilation and air filtration, given the virus’ ability to spread in the air.

A return to mask mandates would also be a good step, Davis says. But even if none of those changes are enacted, she says the government should at least emphasize how common Long COVID appears to be and that it can affect vaccinated people. She fears many vaccinated people think they’re in the clear and can’t get Long COVID, because the Administration has sung the shots’ praises so much. “We’re just drowning in this sea of misinformation that is not only causing people to poorly think about their own risk, but also putting other people at risk,” Davis says.

Those with Long COVID often say they feel like they’re screaming into the void, trying to get through to people who either aren’t aware of or don’t care about the condition and the possibility it could affect them, too. In grocery stores, Hafner marvels—and seethes—at the bare faces she sees. Sometimes, when she’s the only person wearing a mask, “I think, ‘Am I a pariah?’” Hafner says. “We’re at that point where the people in masks are the outliers.”

For many people who are done with the pandemic and the caution that came with it, a maskless supermarket may seem like a sign of progress. But for those with an intimate understanding of Long COVID, it feels like a bad omen.

“It’s no way to live,” McCone says of his day-to-day existence since developing Long COVID. His worst fear, and one that looks like it may come true if progress isn’t made soon, is that millions more people will have to learn that the hard way.