When Ashley Antonio contracted covid-19 in late March, the Canadian criminal lawyer fought against the common symptoms that come with most cases: fever, body aches, fatigue, headaches.
She would manage her symptoms at home and eventually overcome them, she assured herself. After all, she was a healthy 35-year-old with no underlying conditions who boxed and did strength training four times a week.
Except the symptoms never really went away — they intensified.
Now, 259 days later, Antonio is still suffering the repercussions of a virus that has upended almost every aspect of her life.
She has been in and out of the hospital four times in almost nine months. Her doctors have diagnosed Antonio with arthritis and a condition that causes her heartbeat to dramatically increase when she stands up. Both are long-term effects of the virus, they told her. They also don’t know if, and when, those symptoms will go away.
“Everyone is just told you either recover or you die,” Antonio told The Washington Post on Tuesday. “There’s never talk of all the people that are trapped somewhere in the middle with all of these long-term effects. We’re not recovered. We’re just not covid-positive anymore.”
Antonio is not alone. Doctors still aren’t sure why “long-haulers” continue to suffer the consequences of the disease months later or whether the symptoms will stay with them for the rest of their lives. But public health experts say it’s increasingly clear that many thousands of patients face long-term effects from the virus.
Long-haulers “are in every country, in every language,” Igor J. Koralnik, who started a program for covid-19 neurocognitive problems at Northwestern Memorial Hospital in Chicago, told The Post in October. “It’s going to be a big problem. It’s not going to go away.”
So far, clinicians have learned the long-term effects can impact both the old and the young, regardless of whether the case was mild or required hospitalization. Many long-haulers have turned to social media groups to share their experiences and advice.
Antonio, who lives in Edmonton and whose story was first reported by the CBC, said she had been taking precautions and working from home for a month before she got sick. Her best guess is that she caught the virus on a run to the grocery store. She began feeling symptoms around March 25.
But because she did not have a cough, which doctors and health experts then said was one of covid-19′s main symptoms, Antonio thought she only had a stomach flu.
She stayed home and started to feel like herself again days later. But every time she thought she was recovering, symptoms would return. In the next three months, old symptoms and new, graver ones left Antonio tied to her couch. The fatigue was so bad she could shower only a couple of times a week. Her blood oxygen levels would drop dangerously low whenever she took short steps. One day, her brain was so foggy that she could not remember how to hold a glass.
It wasn’t until mid-May when she was taken to the emergency room for the first time. Alone in her bedroom and fighting a high fever, Antonio began hallucinating. Then, she could not feel half of her body or her face. The hospital tested her for the coronavirus, but her results came back negative so she was sent home. About a week later, she was back. She would return two more times in the following months.
“I had every test you could imagine,” she said. But her doctors could still not figure out what exactly was wrong with her. An emergency room doctor suggested she might have long-term covid-19 effects and referred her to a special clinic.
In June, she tested positive for coronavirus antibodies. In July, doctors at a clinic for coronavirus survivors diagnosed her with arthritis and a condition that causes her heartbeat to raise significantly when standing. “But doctors couldn’t explain why my oxygen was still dropping every time I walked or any other symptoms,” she said.
Antonio turned to other long-haulers for more information, joining a Facebook group where she learned, for example, that she wasn’t alone in smelling cigarettes when no one was smoking near her. Other people experienced random smells too, they told her.
“I had a lot of questions and the doctors didn’t have a lot of answers. It was all so new to everyone,” Antonio said. “I just wanted to see if what I was experiencing was ‘normal.’ It was very comforting to know that I wasn’t alone.”
Although her symptoms persisted, in August, Antonio voluntarily returned to the law firm where she works as a criminal lawyer. Some days, she feels okay. But the increased heart rate, shortness of breath, joint pain and headaches are usually daily ailments. She also still suffers from blurry vision and gets skin rashes. Her doctors have now told her it’s possible that her long-term symptoms will come and go for the rest of her life. For now, Antonio said she is taking it one day at a time.
“I’m definitely worried it will be permanent,” she said. “It’s very overwhelming if I think that this is how the rest of my life is going to be.”
Antonio added: “When I have a good day, I no longer think that it will be over. I know I’ll have bad days again. It makes you feel hopeless.”
Dr. Megan Ranney has learned a lot about Covid-19 since she began treating patients with the disease in the emergency department in February.
But there’s one question she still can’t answer: What makes some patients so much sicker than others?
Advancing age and underlying medical problems explain only part of the phenomenon, said Ranney, who has seen patients of similar age, background and health status follow wildly different trajectories.
“Why does one 40-year-old get really sick and another one not even need to be admitted?” asked Ranney, an associate professor of emergency medicine at Brown University.
In some cases, provocative new research shows, some people — men in particular — succumb because their immune systems are hit by friendly fire. Researchers hope the finding will help them develop targeted therapies for those patients.
In an international study in Science, 10 percent of nearly 1,000 Covid-19 patients who developed life-threatening pneumonia had antibodies that disable key immune system proteins called interferons. These antibodies — known as autoantibodies, because they attack the body itself — weren’t found at all in 663 people with mild or asymptomatic Covid-19 infections. Only four of 1,227 healthy patients had the autoantibodies. The study was led by the Covid Human Genetic Effort, which includes 200 research centers in 40 countries.
“This is one of the most important things we’ve learned about the immune system since the start of the pandemic,” said Dr. Eric Topol, executive vice president for research at Scripps Research in San Diego, who wasn’t involved in the new study. “This is a breakthrough finding.”
In a second Science study by the same team, the authors found that an additional 3.5 percent of critically ill patients had mutations in genes that control the interferons involved in fighting viruses. Given that the body has 500 to 600 of those genes, it’s possible that researchers will find more mutations, said Qian Zhang, lead author of the second study.
Interferons serve as the body’s first line of defense against infection, sounding the alarm and activating an army of virus-fighting genes, said virologist Angela Rasmussen, an associate research scientist at the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health.
“Interferons are like a fire alarm and a sprinkler system all in one,” said Rasmussen, who wasn’t involved in the new studies.
Lab studies show that interferons are suppressed in some people with Covid-19, perhaps by the virus itself.
Interferons are particularly important for protecting the body against new viruses, such as the coronavirus, which the body has never encountered, said Zhang, a researcher at Rockefeller University’s St. Giles Laboratory of Human Genetics of Infectious Diseases.
When infected with the novel coronavirus, “your body should have alarms ringing everywhere,” Zhang said. “If you don’t get the alarm out, you could have viruses everywhere in large numbers.”
Significantly, patients didn’t make autoantibodies in response to the virus. Instead, they appeared to have had them before the pandemic even began, said Paul Bastard, the antibody study’s lead author, who is also a researcher at Rockefeller University.
For reasons that researchers don’t understand, the autoantibodies never caused a problem until patients were infected with Covid-19, Bastard said. Somehow, the coronavirus, or the immune response it triggered, appears to have set them in motion.
“Before Covid, their condition was silent,” Bastard said. “Most of them hadn’t gotten sick before.”
Bastard said he now wonders whether autoantibodies against interferon also increase the risk from other viruses, such as influenza. Among patients in his study, “some of them had gotten flu in the past, and we’re looking to see if the autoantibodies could have had an effect on flu.”
Scientists have long known that viruses and the immune system compete in a sort of arms race, with viruses evolving ways to evade the immune system and even suppress its response, said Sabra Klein, a professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health.
Antibodies are usually the heroes of the immune system, defending the body against viruses and other threats. But sometimes, in a phenomenon known as autoimmune disease, the immune system appears confused and creates autoantibodies. This occurs in diseases such as rheumatoid arthritis, when antibodies attack the joints, and Type 1 diabetes, in which the immune system attacks insulin-producing cells in the pancreas.
Although doctors don’t know the exact causes of autoimmune disease, they’ve observed that the conditions often occur after viral infections. Autoimmune diseases are more common as people age.
In yet another unexpected finding, 94 percent of patients in the study with the autoantibodies were men. About 12.5 percent of men with life-threatening Covid-19 pneumonia had autoantibodies against interferon, compared with 2.6 percent of women.
“I’ve been studying sex differences in viral infections for 22 years, and I don’t think anybody who studies autoantibodies thought this would be a risk factor for Covid-19,” Klein said.
The study might help explain why men are more likely than women to become critically ill with Covid-19 and die, Klein said.
“You see significantly more men dying in their 30s, not just in their 80s,” she said.
Akiko Iwasaki, a professor of immunobiology at the Yale School of Medicine, noted that several genes involved in the immune system’s response to viruses are on the X chromosome.
Women have two copies of this chromosome — along with two copies of each gene. That gives women a backup in case one copy of a gene becomes defective, Iwasaki said.
Men, however, have only one copy of the X chromosome. So if there is a defect or a harmful gene on the X chromosome, they have no other copy of the gene to correct the problem, Iwasaki said.
Bastard noted that one woman in the study who developed autoantibodies has a rare genetic condition in which she has only one X chromosome.
Women more likely to be ‘long-haulers’
Scientists have struggled to explain why men have a higher risk of hospitalization and death from Covid-19. When the disease first appeared in China, experts speculated that men suffered more from the virus because they are much more likely to smoke than Chinese women.
Researchers quickly noticed that men in Spain were also more likely to die of Covid-19, however, even though men and women there smoke at about the same rate, Klein said.
Experts have hypothesized that men might be put at higher risk by being less likely to wear masks in public than women and more likely to delay seeking medical care, Klein said.
But behavioral differences between men and women provide only part of the answer. Scientists say it’s possible that the hormone estrogen may somehow protect women, while testosterone may put men at greater risk. Interestingly, recent studies have found that obesity poses a much greater risk to men with Covid-19 than to women, Klein said.
Yet women have their own form of suffering from Covid-19.
Studies show that women are four times more likely to experience long-term Covid-19 symptoms, lasting weeks or months, including fatigue, weakness and a kind of mental confusion known as “brain fog,” Klein said.
As women, “maybe we survive it and are less likely to die, but then we have all these long-term complications,” she said.
After reading the studies, Klein said she would like to learn whether patients who become severely ill from other viruses, such as influenza, also harbor genes or antibodies that disable interferon.
“There’s no evidence for this in flu,” Klein said. “But we haven’t looked. Through Covid-19, we may have uncovered a very novel mechanism of disease, which we could find is present in a number of diseases.”
To be sure, scientists say the new study solves only part of the mystery of why patient outcomes can vary so greatly.
Researchers say it’s possible that some patients are protected by previous exposure to other coronaviruses. Patients who get very sick also may have inhaled higher doses of the virus, such as from repeated exposure to infected co-workers.
Screening patients for autoantibodies against interferons could help predict which patients are more likely to become very sick, said Bastard, who is also affiliated with the Necker Hospital for Sick Children in Paris. Testing takes about two days. Hospitals in Paris can now screen patients on request from a doctor, he said.
Although only 10 percent of patients with life-threatening Covid-19 have autoantibodies, “I think we should give the test to everyone who is admitted,” Bastard said. Otherwise, “we wouldn’t know who is at risk for a severe form of the disease.”
Bastard said he hopes his findings will lead to new therapies that save lives. He noted that the body manufactures many types of interferons. Giving patients a different type of interferon — one not disabled by their genes or autoantibodies — might help them fight off the virus.
In fact, a pilot study of 98 patients published Thursday in the Lancet Respiratory Medicine journal found benefits from an inhaled form of interferon. In the industry-funded British study, hospitalized Covid-19 patients randomly assigned to receive interferon beta-1a were more than twice as likely as others to recover enough to resume their regular activities.
Researchers need to confirm the findings in a much larger study, said Dr. Nathan Peiffer-Smadja, a researcher at Imperial College London who wasn’t involved in the study but wrote an accompanying editorial. Future studies should test patients’ blood for genetic mutations and autoantibodies against interferon to see whether they respond differently from others.
Peiffer-Smadja said inhaled interferon may work better than an injected form of the drug because it’s delivered directly to the lungs. While injected versions of interferon have been used for years to treat other diseases, the inhaled version is still experimental and not commercially available.
And doctors should be cautious about interferon for now, because a study led by the World Health Organization found no benefit to an injected form of the drug in Covid-19 patients, Peiffer-Smadja said. In fact, there was a trend toward higher mortality rates in patients given interferon, although the finding could have been due to chance. Giving interferon later in the course of disease could encourage a destructive immune overreaction called a cytokine storm, in which the immune system does more damage than the virus.
Around the world, scientists have launched more than 100 clinical trials of interferons, according to clinicaltrials.gov, a database of research studies from the National Institutes of Health.
Until larger studies are completed, doctors say, Bastard’s findings are unlikely to change how they treat Covid-19.
Dr. Lewis Kaplan, president of the Society of Critical Care Medicine, said he treats patients according to their symptoms, not their risk factors.
“If you are a little sick, you get treated with a little bit of care,” Kaplan said. “You are really sick, you get a lot of care. But if a Covid patient comes in with hypertension, diabetes and obesity, we don’t say: ‘They have risk factors. Let’s put them in the ICU.'”
One of President Trump’s top medical advisers is urging the White House to embrace a controversial “herd immunity” strategy to combat the pandemic, which would entail allowing the coronavirus to spread through most of the population to quickly build resistance to the virus, while taking steps to protect those in nursing homes and other vulnerable populations, according to five people familiar with the discussions.
The administration has already begun to implement some policies along these lines, according to current and former officials as well as experts, particularly with regard to testing.
The approach’s chief proponent is Scott Atlas, a neuroradiologist from Stanford’s conservative Hoover Institution, who joined the White House earlier this month as a pandemic adviser. He has advocated that the United States adopt the model Sweden has used to respond to the virus outbreak, according to these officials, which relies on lifting restrictions so the healthy can build up immunity to the disease rather than limiting social and business interactions to prevent the virus from spreading.
Sweden’s handling of the pandemic has been heavily criticized by public health officials and infectious-disease experts as reckless — the country has among the highest infection and death rates in the world. It also hasn’t escaped the deep economic problems resulting from the pandemic.
But Sweden’s approach has gained support among some conservatives who argue that social distancing restrictions are crushing the economy and infringing on people’s liberties.
That this approach is even being discussed inside the White House is drawing concern from experts inside and outside the government who note that a herd immunity strategy could lead to the country suffering hundreds of thousands, if not millions, of lost lives.
“The administration faces some pretty serious hurdles in making this argument. One is a lot of people will die, even if you can protect people in nursing homes,” said Paul Romer, a professor at New York University who won the Nobel Prize in economics in 2018. “Once it’s out in the community, we’ve seen over and over again, it ends up spreading everywhere.”
Atlas, who does not have a background in infectious diseases or epidemiology, has expanded his influence inside the White House by advocating policies that appeal to Trump’s desire to move past the pandemic and get the economy going, distressing health officials on the White House coronavirus task force and throughout the administration who worry that their advice is being followed less and less.
Atlas declined several interview requests in recent days. After the publication of this story, he released a statement through the White House: “There is no policy of the President or this administration of achieving herd immunity. There never has been any such policy recommended to the President or to anyone else from me.”
White House communications director Alyssa Farah said there is no change in the White House’s approach toward combatting the pandemic.
“President Trump is fully focused on defeating the virus through therapeutics and ultimately a vaccine. There is no discussion about changing our strategy,” she said in a statement. “We have initiated an unprecedented effort under Operation Warp Speed to safely bring a vaccine to market in record time — ending this virus through medicine is our top focus.”
White House officials said Trump has asked questions about herd immunity but has not formally embraced the strategy. The president, however, has made public comments that advocate a similar approach.
“We are aggressively sheltering those at highest risk, especially the elderly, while allowing lower-risk Americans to safely return to work and to school, and we want to see so many of those great states be open,” he said during his address to the Republican National Convention Thursday night. “We want them to be open. They have to be open. They have to get back to work.”
Atlas has fashioned himself as the “anti-Dr. Fauci,” one senior administration official said, referring to Anthony S. Fauci, the nation’s top infectious-disease official, who has repeatedly been at odds with the president over his public comments about the threat posed by the virus. He has clashed with Fauci as well as Deborah Birx, the White House coronavirus response coordinator, over the administration’s pandemic response.
Atlas has argued both internally and in public that an increased case count will move the nation more quickly to herd immunity and won’t lead to more deaths if the vulnerable are protected. But infectious-disease experts strongly dispute that, noting that more than 25,000 people younger than 65 have died of the virus in the United States. In addition, the United States has a higher number of vulnerable people of all ages because of high rates of heart and lung disease and obesity, and millions of vulnerable people live outside nursing homes — many in the same households with children, whom Atlas believes should return to school.
“When younger, healthier people get the disease, they don’t have a problem with the disease. I’m not sure why that’s so difficult for everyone to acknowledge,” Atlas said in an interview with Fox News’s Brian Kilmeade in July. “These people getting the infection is not really a problem and in fact, as we said months ago, when you isolate everyone, including all the healthy people, you’re prolonging the problem because you’re preventing population immunity. Low-risk groups getting the infection is not a problem.”
Atlas has said that lockdowns and social distancing restrictions during the pandemic have had a health cost as well, noting the problems associated with unemployment and people forgoing health care because they are afraid to visit a doctor.
“From personal communications with neurosurgery colleagues, about half of their patients have not appeared for treatment of disease which, left untreated, risks brain hemorrhage, paralysis or death,” he wrote in The Hill newspaper in May
The White House has left many of the day-to-day decisions regarding the pandemic to governors and local officials, many of whom have disregarded Trump’s advice, making it unclear how many states would embrace the Swedish model, or elements of it, if Trump begins to aggressively push for it to be adopted.
But two senior administration officials and one former official, as well as medical experts, noted that the administration is already taking steps to move the country in this direction.
The Department of Health and Human Services, for instance, invoked the Defense Production Act earlier this month to expedite the shipment of tests to nursing homes — but the administration has not significantly ramped up spending on testing elsewhere, despite persistent shortages. Trump and top White House aides, including Atlas, have also repeatedly pushed to reopen schools and lift lockdown orders, despite outbreaks in several schools that attempted to resume in-person classes.
The Centers for Disease Control and Prevention also updated its testing guidance last week to say that those who are asymptomatic do not necessarily have to be tested. That prompted an outcry from medical groups, infectious-disease experts and local health officials, who said the change meant that asymptomatic people who had contact with an infected person would not be tested. The CDC estimates that about 40 percent of people infected with covid-19, the disease caused by the coronavirus, are asymptomatic, and experts said much of the summer surge in infections was due to asymptomatic spread among young, healthy people.
Trump has previously floated “going herd” before being convinced by Fauci and others that it was not a good idea, according to one official.
The discussions come as at least 5.9 million infections have been reported and at least 179,000 have died from the virus this year and as public opinion polls show that Trump’s biggest liability with voters in his contest against Democratic nominee Joe Biden is his handling of the pandemic. The United States leads the world in coronavirus cases and deaths, with far more casualties and infections than any other developed nation.
The nations that have most successfully managed the coronavirus outbreak imposed stringent lockdown measures that a vast majority of the country abided by, quickly ramped up testing and contact tracing, and imposed mask mandates.
Atlas meets with Trump almost every day, far more than any other health official, and inside the White House is viewed as aligned with the president and White House Chief of Staff Mark Meadows on how to handle the outbreak, according to three senior administration officials.
In meetings, Atlas has argued that metropolitan areas such as New York, Chicago and New Orleans have already reached herd immunity, according to two senior administration officials. But Birx and Fauci have disputed that, arguing that even cities that peaked to potential herd immunity levels experience similar levels of infection if they reopen too quickly, the officials said.
Trump asked Birx in a meeting last month whether New York and New Jersey had reached herd immunity, according to a senior administration official. Birx told the president there was not enough data to support that conclusion.
Atlas has supporters who argue that his presence in the White House is a good thing and that he brings a new perspective.
“Epidemiology is not the only discipline that matters for public policy here. That is a fundamentally wrong way to think about this whole situation,” said Avik Roy, president of the Foundation for Research on Equal Opportunity, a think tank that researches market-based solutions to help low-income Americans. “You have to think about what are the costs of lockdowns, what are the trade-offs, and those are fundamentally subjective judgments policymakers have to make.”
It remains unclear how large a percentage of the population must become infected to achieve “herd immunity,” which is when enough people become immune to a disease that it slows its spread, even among those who have not been infected. That can occur either through mass vaccination efforts, or when enough people in the population become infected with coronavirus and develop antibodies that protect them against future infection.
Estimates have ranged from 20 percent to 70 percent for how much of a population would need to be infected. Soumya Swaminathan, the World Health Organization’s chief scientist, said given the transmissibility of the novel coronavirus, it is likely that about 65 to 70 percent of the population would need to become infected for there to be herd immunity.
With a population of 328 million in the United States, it may require 2.13 million deaths to reach a 65 percent threshold of herd immunity, assuming the virus has a 1 percent fatality rate, according to an analysis by The Washington Post.
It also remains unclear whether people who recover from covid-19 have long-term immunity to the virus or can become reinfected, and scientists are still learning who is vulnerable to the disease. From a practical standpoint, it is also nearly impossible to sufficiently isolate people at most risk of dying due to the virus from the younger, healthier population, according to public health experts.
Atlas has argued that the country should only be testing people with symptoms, despite the fact that asymptomatic carriers spread the virus. He has also repeatedly pushed to reopen schools and advocated for college sports to resume. Atlas has said, without evidence, that children do not spread the virus and do not have any real risk from covid-19, arguing that more children die of influenza — an argument he has made in television and radio interviews.
Atlas’s appointment comes after Trump earlier this summer encouraged his White House advisers to find a new doctor who would argue an alternative point of view from Birx and Fauci, whom the president has grown increasingly annoyed with for public comments that he believes contradict his own assertions that the threat of the virus is receding. Advisers sought a doctor with Ivy League or top university credentials who could make the case on television that the virus is a receding threat.
Atlas caught Trump’s attention with a spate of Fox News appearances in recent months, and the president has found a more simpatico figure in the Stanford doctor for his push to reopen the country so he can focus on his reelection. Atlas now often sits in the briefing room with Trump during his coronavirus news conferences, even as other doctors do not. He has given the president somewhat of a medical imprimatur for his statements and regularly helps draft the administration’s coronavirus talking points from his West Wing office as well as the slides that Trump often relies on for his argument of a diminishing threat.
Atlas has also said he is unsure “scientifically” whether masks make sense, despite broad consensus among scientists that they are effective. He has selectively presented research and findings that support his argument for herd immunity and his other ideas, two senior administration officials said.
Fauci and Birx have both said the virus is a threat in every part of the country. They have also put forward policy recommendations that the president views as too draconian, including mask mandates and partial lockdowns in areas experiencing surges of the virus.
Birx has been at odds with Atlas on several occasions, with one disagreement growing so heated at a coronavirus meeting earlier this month that other administration officials grew uncomfortable, according to a senior administration official.
One of the main points of tension between the two is over school reopenings. Atlas has pushed to reopen schools and Birx is more cautious.
“This is really unfortunate to have this fellow Scott Atlas, who was basically recruited to crowd out Tony Fauci and the voice of reason,” said Eric Topol, a cardiologist and head of the Scripps Research Translational Institute in San Diego. “Not only do we not embrace the science, but we repudiate the science by our president, and that has extended by bringing in another unreliable misinformation vector.”
Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.
Lauren nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.
Tens of thousands of people, collectively known as “long-haulers,” have similar stories.I first wrote about them in early June. Since then, I’ve received hundreds of messages from people who have been suffering for months—alone, unheard, and pummeled by unrelenting and unpredictable symptoms. “It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.
Of the long-haulers Putrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy. They look very different from the typical portrait of a COVID-19 patient—an elderly person with preexisting health problems. “It’s scary because in the states that are surging, we have all these young people going out thinking they’re invincible, and this could easily knock them out for months,” Putrino told me. And for some, months of illness could turn into years of disability.
Our understanding of COVID-19 has accreted around the idea that it kills a few and is “mild” for the rest. That caricature was sketched before the new coronavirus even had a name; instead of shifting in the light of fresh data, it calcified. It affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers. Nichols’s initial symptoms were so unlike the official description of COVID-19 that her first doctor told her she had acid reflux and refused to get her tested. “Even if you did have COVID-19, you’re 32, you’re healthy, and you’re not going to die,” she remembers him saying. (She has since tested positive.)
Long-haulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia and myalgic encephalomyelitis, also known as chronic fatigue syndrome. A British group—LongCovidSOS—launched a campaign to push the government for recognition, research, and support.
All of this effort started to have an effect. More journalists wrote stories about them. Some doctors began taking their illness seriously. Some researchers are developing treatment and rehabilitation programs. Representative Jamie Raskin of Maryland introduced a bill that would allow the National Institutes of Health to fund and coordinate more research into chronic illnesses that follow viral infections.
It’s not enough, argues Nisreen Alwan, a public-health professor at the University of Southampton who has had COVID-19 since March 20. She says that experts and officials should stop referring to all nonhospitalized cases as “mild.” They should agree on a definition of recovery that goes beyond being discharged from the hospital or testing negative for the virus, and accounts for a patient’s quality of life. “We cannot fight what we do not measure,” Alwan says. “Death is not the only thing that counts. We must also count lives changed.”
Only then will we truly know the full stakes of the pandemic. As many people still fantasize about returning to their previous lives, some are already staring at a future where that is no longer possible.
A few formal studies have hinted at the lingering damage that COVID-19 can inflict. In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months. A team from the Centers for Disease Control and Prevention found that a third of 270 nonhospitalized patients hadn’t returned to their usual state of health after two weeks. (For comparison, roughly 90 percent of people who get the flu recover within that time frame.)
These findings, though limited, are galling. They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.
These people are still paying the price for early pandemic failures. Many long-haulers couldn’t get tested when they first fell sick, because such tests were scarce. Others were denied tests because their symptoms didn’t conform to a list we now know was incomplete. False negatives are more common as time wears on; when many long-haulers finally got tested weeks or months into their illness, the results were negative. On average, long-haulers who tested negative experienced the same set of symptoms as those who tested positive, which suggests that they truly do have COVID-19. But their negative result still hangs over them, shutting them out of research and treatments.
Several studies have found that most COVID-19 patients produce antibodies that recognize the new coronavirus, and that these molecules endure for months. Their presence should confirm whether a long-hauler was indeed infected. But there’s a catch: Most existing antibody studies focused on either hospitalized patients or those with mild symptoms and swift recoveries. By contrast, Putrino told me that in his survey of 1,400 long-haulers, two-thirds of those who have had antibody tests got negative results, even though their symptoms were consistent with COVID-19. Nichols, for example, tested negative for antibodies after twice testing positive for the coronavirus itself. “Just because you’re negative for antibodies doesn’t mean you didn’t have COVID-19,” Putrino said.
Organizations and governments have been slow to recognize what long-haulers call “long COVID.” In July, the U.K. allocated $11 million (£8.4 million) for research into the long-term consequences of COVID-19, but “to be eligible, you have to have been admitted into hospital,” says Trisha Greenhalgh, a primary-health-care professor at the University of Oxford. “That makes no sense.” Meanwhile, the CDC’s website still does not mention this phenomenon, and its list of symptoms barely reflects the full range of neurological problems. As late as June 25, the agency’s deputy director for infectious diseases said “we don’t yet know” whether COVID-19 “could persist for more than a few months.” By then, thousands of long-haulers already did know, and had been talking about it.
Without clear information from official sources, many long-haulers have found answers from one another. Support groups on Facebook have thousands of members. One Slack group, founded within a wellness organization called Body Politic, has almost doubled in size since June to more than 7,000 active participants from 25 countries. There are channels for discussing every organ system in the body. There are lists of sympathetic medical providers, and tips for convincing those who aren’t listening. Eerily, the group’s membership morphs as the pandemic spreads: “When Brazil had a huge spike, we had a massive influx of Brazilian patients,” said Nichols, who is an administrator.
The Body Politic group has its own team of researchers, whose survey of 640 long-haulers remains the most illuminating study of the long COVID experience. More than any formally published study, it cataloged the full range of symptoms, and explored problems with stigma and testing.
Many long-haulers start feeling better in their fourth or fifth month, but recovery is tentative, variable, and not guaranteed. Hannah Davis, an artist in New York City, still has fever, facial numbness, brain fog, and rapid heartbeats whenever she stands up, but she’s sleeping better, at least; at the end of July, she had her first relatively normal day since mid-March. Margot Gage, a social epidemiologist at Lamar University, has only now regained the ability to read without shooting pain, but still has debilitating headaches and fatigue. Hannah Wei, a product designer based in Ottawa who is a Body Politic researcher, has recovered from her neurological symptoms but not the scars the coronavirus left on her lungs. “Will I be living with this lasting damage, or will it eventually go away?” she says. “I don’t have the answers, and no one can tell me.”
The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief. Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had COVID-19. “Every specialist I saw—cardiologist, rheumatologist, dermatologist, neurologist—was wedded to this idea that ‘mild’ COVID-19 infections last two weeks,” says Angela Meriquez Vázquez, a children’s activist in Los Angeles. “In one of my first ER visits, I was referred for a psychiatric evaluation, even though my symptoms were of heart attack and stroke.”
This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color. “Doctors not taking our conditions seriously is a common issue, and now we have COVID-19 on top of it,” says Gage, who is Black. When she sought medical help for her symptoms, doctors in two separate hospitals assumed she was having a drug overdose.
Such gaslighting still occurs, but has been reduced by the recent spate of media attention. Davis was stunned when she met with a cardiologist who used the term long-hauler without needing an explanation. Vázquez burst into tears after her new primary-care provider instantly believed her. “I went into that appointment armed with my notebook, ready to do battle,” she says. “Just having a doctor who believed that my symptoms were directly related to COVID-19 was transformative.”
Putrino, the Mount Sinai doctor, came to recognize long COVID on his own. Back in March, he realized that some patients who were referred to his hospital were in bad shape but weren’t sick enough to be admitted. His team created an app to keep track of these people remotely. By late May, they realized that “around 10 percent just weren’t getting better,” he told me. He has since started a program at Mount Sinai that’s dedicated to caring for long-haulers.
But such programs are still scarce, creating large geographical deserts where long-haulers cannot find help. Putrino cannot see patients who live outside New York State. Igor Koralnik, a neurologist at Northwestern Medicine who runs a similar operation, was booked solid through April 2021; he has since brought extra staff members so he could accept more patients. Canadian long-haulers “have just one clinic, in Toronto, and that’s it,” Wei says.
Putrino thinks that many long-haulers have symptoms that resemble dysautonomia. This is an umbrella term for disorders that disturb the autonomic nervous system, which controls bodily functions such as breathing, heart rate, blood pressure, and digestion. Damage to this system, whether inflicted by the virus itself or by an overly intense immune response, might explain why many long-haulers struggle for breath when their oxygen levels are normal, or have unsteady heartbeats when they aren’t feeling anxious. Things that were once automatic are now erratic.
More than 90 percent of long-haulers whom Putrino has worked with also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,” Putrino said. This is the defining symptom of myalgic encephalomyelitis, or chronic fatigue syndrome. For decades, people with ME/CFS have endured the same gendered gaslighting that long-haulers are now experiencing. They’re painfully familiar with both medical neglect and a perplexing portfolio of symptoms.
These symptoms defeat intuitions that people have about work and rest, sickness and recovery. “You have to get away from this idea that you can do more each day, or that you can push through,” says Caroline Dalton of Sheffield Hallam University in England, who works for a COVID-19 rehabilitation program. Many long-haulers push themselves because they miss their lives, or need to return to work. But as her colleague Robert Copeland, a sport psychologist, explains, “managing your fatigue is now your full-time job.”
The trick, then, is to slowly recondition a patient’s nervous system through careful exercises, without triggering a debilitating crash. On Putrino’s team, a strength and conditioning coach devises workouts to slowly get patients accustomed to a higher heart rate. A nutritionist fashions personalized meal plans to compensate for any dietary deficiencies. A neuropsychologist—Gudrun Lange, who has long worked with ME/CFS patients and is helping the group pro bono—uses relaxation and somatic-awareness techniques to help long-haulers manage their feelings about their condition.
Putrino insists on seeing and caring for all the long-haulers that he can. His colleagues at Mount Sinai’s newly launched center for post-COVID-19 care have to follow guidelines that permit them to admit only patients with positive tests. Anyone the center can’t admit is referred to Putrino’s team, which also keeps in touch with the Body Politic group to track patients who fall through the cracks.
I asked him why he is so inclined to believe long-haulers when so many other medical professionals dismiss them. First, he said, “these people are telling us the same things over and over again.” But also, his wife has Ehlers-Danlos syndrome—a group of genetic disorders that affect the body’s connective tissues, and that commonly lead to dysautonomia. “I watched her go through the same thing: ‘You must have anxiety, or panic attacks, or every-excuse-under-the-sun,’” he told me. “Finally, after three years of searching, someone said, ‘Oh, you have dysautonomia and EDS.’ They put her on a treatment protocol, and she could live her life again.”
“If you listen to the population you’re trying to help, they’ll tell you what’s wrong,” he said.
Nichols is a few weeks away from meeting the CDC’s criteria for ME/CFS. She has post-exertional malaise. She has brain fog. On September 9, she’ll mark her sixth month of extreme fatigue. “Am I happy about it? No,” she said. “But I have to face reality. If this is what I have, this is what I have.” Lots of long-haulers are in the same boat. Many (but not all) cases of ME/CFS are triggered by viral infections, and new clusters have historically emerged after outbreaks. “When COVID-19 started to happen, I said to my husband, ‘Oh God, there’s going to be an avalanche of ME/CFS,’” Lange told me.
Some long-haulers are skeptical—and even angry—about the ME/CFS connection. They won’t countenance the prospect of being chronically disabled. They don’t want to be labeled with a condition that has long been trivialized. Nichols sympathizes; she used to trivialize it herself. “I falsely thought it was just people being too tired—and I feel terrible about that,” she said. Her plan is to use her imminent diagnosis as fuel for advocacy, “as a way of paying back the ME community for my disbelief.”
But COVID-19 is still a new disease, and ME/CFS is just one of several possible outcomes. Some long-haulers recover before the six-month threshold. Some don’t have post-exertional malaise. Some have lung damage and breathing problems that aren’t traditional ME/CFS symptoms. Some have symptoms that more closely fit with other chronic illnesses, including dysautonomia, fibromyalgia, or mast cell activation syndrome.
Putrino doesn’t want to assign any labels. “Let’s just start helping them,” he said, while simultaneously collecting data that will eventually show how much long COVID overlaps with other known syndromes. (Several other teams are conducting similar studies.) Even when symptoms such as fatigue are shared, their biological roots might differ—and those differences matter. Exercise might be devastating for someone with ME/CFS, but might benefit a patient with something else. Many long-haulers, meanwhile, are treating any diagnosis as more of an anchor than an answer: It’s a starting point for understanding what’s happening to them. Vázquez, for example, was diagnosed with MCAS, and although it’s not a perfect match for her symptoms, “it’s close enough,” she says.
No matter the exact diagnosis, the COVID-19 pandemic will almost certainly create a substantial wave of chronically disabled people. It might be hard to ignore this cohort because of the sheer number of them, the intense attention commanded by the pandemic, and the stories from celebrities such as the actor Alyssa Milano and the journalist Chris Cuomo. Then again, they might face the same neglect that people with ME/CFS have long endured. “We’ve been demanding for decades that people do something,” says Terri Wilder, who has ME/CFS and is an activist with #MEAction. “I’ve met with [NIH Director] Francis Collins. I’ve called Tony Fauci, and state senators. We still have no FDA-approved drugs, no systems of care. We only have 10 to 15 ME/CFS medical experts in the country. We all want our lives back, and we want this broken system fixed.”
The uncertainty that long-haulers are experiencing results from that long-standing neglect. But so does the help they’re getting from people with chronic illnesses, who have already walked the same path. When the pandemic began, “it was like watching the roller coaster go up the hill, and only people like us knew that the track was broken,” says Alison Sbrana, who has ME/CFS and dysautonomia. She now spends her few productive weekly hours moderating the Body Politic support group. She has invited ME/CFS and dysautonomia specialists to give seminars, and has directed people to credible resources on aspects of disabled life, including care and benefits.
That frontier, in which long-haulers attempt to access social support, “is about to be a shit show,” Sbrana says. Some want their employers to make accommodations, such as reduced hours or long-term sick leave, so they can keep working at a time when their medical bills are mounting. Others cannot work, but are pressured to do so by bosses who don’t understand what long COVID is. “We keep seeing that people who don’t have a positive test result struggle to get paid time off work,” says Fiona Lowenstein, who founded Body Politic. Yet others “don’t want people to see them as complainers, push themselves, and then get sicker,” says Barbara Comerford, a New Jersey–based attorney who specializes in disability law and has represented many people with ME/CFS.
If they lose their jobs, “they’re in really bad shape,” she adds. Other sources of disability benefits and care, including private insurance and Social Security, are notoriously hard to access. Long-haulers would need to provide a history of being unable to do substantial gainful employment, and ample medical documentation of their disability to prove that it’s expected to last at least a year. Many have neither.
Being a long-hauler in August is very different from being one in February. The first wave, who were infected early in the year, endured months of solitude and confusion. While the national narrative shifted from physical distancing to reopenings, their realities were pinned in place by fever or fatigue. Many had no idea that others were going through the same ordeal. They wondered why they were still sick, or how long they’d be sick for. “We didn’t know what tomorrow would bring,” Nichols said.
Long-hauler support groups act as windows in time. In the Body Politic community, “the earliest person we know got sick in January,” Davis says. “She posts from the future, two months ahead of everyone else.” Conversely, as veteran long-haulers watch new generations pass the same monthly milestones, some are struck by a strange sense of solidarity, validation, and jealousy. The newer long-haulers already know what to call themselves, have bustling communities to learn from, and have better access to tests and medical care. The older ones are battle-worn and weary. “There’s something about having got sick in March and April that’s a unique experience, almost like post-traumatic stress disorder,” Vázquez says.
Throughout the pandemic, systemic failures have been portrayed as personal ones. Many people ignored catastrophic governmental choices that allowed the coronavirus to spread unchecked, and instead castigated individuals for going to beaches or wearing masks incorrectly. So, too, with recovery. The act of getting better is frequently framed as a battle between person and pathogen, ignoring everything else that sways the outcome of that conflict—the disregard from doctors and the sympathy from strangers, the choices of policy makers and the narratives of journalists. Nothing about COVID-19 exists in a social vacuum. If people are to recover, “you have to create the conditions in which they can recover,” Copeland, the sport psychologist from Sheffield Hallam, says.
If those conditions don’t exist, they can be at least partly willed into existence. Here, too, the long-hauler story is a microcosm of the pandemic. In the U.S., citizens chose to physically distance themselves, take precautions, and wear masks long before leaders urged or ordered them to do so. Likewise, the long-haulers have taken matters into their own hands, pushing for respect, research, and support when none were offered.
But such effort comes at a cost. Long-haulers are precariously perched on a physiological precipice—a difficult position from which to fight for their future. “A lot of people who don’t have the energy to educate the world are educating the world,” Nichols said.