DEzekiel Emanuel used to believe that he is the only person still concerned 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. Professor at the University of Pennsylvania, Bioethicist and Oncologist provides four HEPA filters for lectures and each student with an N95 mask. To keep his mask on, he opens the doors of Ubers and orders food from the kitchen. He’s given up one of his favorite pastimes—dining at restaurants—even now that many people don’t think twice about eating indoors.
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. A poll conducted by Axios and Ipsos in July found that 17% of COVID-19 patients fear the prospect of developing Long COVID. This is an incurable condition where symptoms can linger long enough to cause permanent disability. 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.
Public-health agencies are not immune to it. The U.S. Centers for Disease Control and Prevention has rescinded many of the COVID-19 recommendations it had recommended. 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. 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. It believes that a lighter approach is necessary now that most Americans have good protection from severe diseases, whether they are vaccinated or contract COVID-19. “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.
On July 11, 2022, people wearing masks work and shop in Santee Ally Los Angeles.
Jason Armond—Los Angeles Times/Getty Images
Long COVID is still a growing problem despite the high level of immunity in our population. 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.
Many forms of COVID may be present, including chronic pain, exhaustion, cognitive dysfunction and neurological problems. People can develop it whether they’re young or old, sick or healthy, vaccinated or not. Although some patients recover in just a few months, many people can suffer for several years. This is according to recent research and the experiences of numerous patients. Long COVID is not curable. The only thing you can do to avoid it is to stop getting infected.
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. While the virus does not cause as much death or hospitalization as in its earlier days, every day it causes more havoc. According to the Center for American Progress (a progressive think tank), around 1.2 million Americans were disabled by the virus as of 2021. Due to Long COVID, up to 4,000,000 people are currently out of work in the U.S. The waitlists for Long COVID specialists can be months long. 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.”
The White House South Court Auditorium, March 30, 2022 – President Joe Biden speaks about COVID-19
Demetrius Freeman—The Washington Post/Getty Images
Joe Biden was elected president on the promise of defeating COVID-19. For a time, it seemed like he would fulfill his promise. In 2021’s spring and early-summer, there were approximately 12,000 cases each day. The vaccines had been effective. The masks started to fall off. It was a good life.
After the Omicron tsunami, Delta struck, then Omicron followed, making it difficult to see the way out of the pandemic. It was clear that the U.S. would choose to accept COVID-19 rather than trying to defeat 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.
Americans welcome the return of 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. Because he felt so weak, he almost visited the emergency room. It took several weeks before his symptoms improved. About a month later, he was finally able to get on 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.
McCone is still living in the same house two years after his diagnosis. His symptoms include severe fatigue and chest pains, shortness, breathing difficulties, and dysfunction of the nervous system. 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 is a machine-learning expert and began research on Long COVID in response to her own diagnosis. She also became ill in March 2020. Davis was a witness to Long COVID in Congress, and has advised federal health officials on the matter. 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 Nichols is COVID for many years. She takes a break to measure her blood oxygen level and heart rate using a machine attached to her finger. This was done in Andover MA, Aug. 3, 2022.
Lauren Owens Lambert—Reuters
“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.
Kristin Urquiza founded Marked By COVID to help her family understand the risks and prevent the spread of the virus. Kristin was inspired by the death of her father from the virus, which she says is not enough. “Leaders have thrown their hands up in the air and basically said, ‘You do you,’” she says.
Long COVID has been addressed by the federal government. Late 2020 saw the Congress give $1 billion to the National Institutes of Health, (NIH), for research into Long COVID. This funding has so far not resulted in any treatment, preventative tools or research that could be immediately applied to patient care. 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 Information 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 has announced that it will start treatment-focused trials in the fall. Mahon said that Long COVID symptoms, risk factors, and prevalence are still being researched by the CDC.
There are many interesting leads that research delays can be due to. Putrino says that extensive Long COVID research was published within the last two-years, with most of this coming from independent labs. Scientists have discovered multiple explanations for Long-CoVID symptoms, including the presence of the SARS virus, altered immune system activity and reactivation or other viruses that were previously dormant. There are also tiny blood clots in the body. The disparate results suggest there could be multiple root causes and subtypes to Long COVID. This means that not everyone might respond to the exact same treatment. Topol states that each of these findings suggests an alternative path for treatment and is worth investigating.
An health care worker makes a dose at Brooklyn Children’s Museum in New York City, June 23, 2022.
Michael Nagle—Bloomberg/Getty Images
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. However, even if you use conservative prevalence estimates, there is still a large problem. Every day, approximately 60,000 Americans test positive for COVID-19. This means that thousands of people are being affected by a potentially debilitating disease every day, even if these numbers are lower. According to the World Health Organization’s Sept. 13 report, 17 million Europeans developed Long COVID in the initial two years of this pandemic.
“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.”
Katie Hafner (64) is a journalist, author and was infected with Long COVID. She had been vaccinated, boosted, and was left to deal with the consequences. In May, she was infected and suffered from severe fatigue and brain fog. Although her Long COVID symptoms are milder and improve with time, Hafner states that she is still able to manage just a few hours per day. She also needs to be careful about monitoring her mental and physical energy. Since getting sick, her anxiety levels have increased.
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.
These risks are significant. 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.”
Economic tolls could also be severe. According to an August Brookings Institution report, up to 4,000,000 Americans are currently out of work due to Long COVID. This is a cost to the U.S. economy of at least $170 Billion in lost wages annually. According to a Kaiser Family Foundation study, only 44% of those who were employed before Long COVID became effective are currently fully employed. The rest of the population is either unemployed or have reduced hours.
Long-term workers who have become disabled and are no longer able to work for their jobs often turn 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.
Eve Efron is a patient with Long COVID and she has had it for almost one year. Eve often has to lay down on the couch in Fairfax VA, on February 3, 2022.
Carolyn Van Houten—The Washington Post/Getty Images
Experts believe there’s more to do, even before any new treatment is developed or discovered. Topol suggests that the CDC tells people not to stay infected for more than 5 days and push for booster shots. This will slow down transmission. Emanuel would prefer to have better information about the masks that protect against infection. N95 respirators are far more effective than cloth or surgical masks. However, many still wear droopy 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.
Davis believes that reintroducing mask mandates is a positive step. She believes that even if no changes are made, the government should emphasize just how prevalent Long COVID seems to be and its potential impact on vaccinated persons. 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.”
A supermarket that is not staffed by masks may be a sign of improvement for many who have had enough with the panic and all the warnings it brought. For those who have a deep understanding of Long COVID it can feel like a negative sign.
“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.
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