Many who were sick early on still have lingering, often serious symptoms—and the question no one wants to ask is: What if they never go away?
CAITLIN HOUSTON OF Wallingford, CT, thought it was bad allergies when she started feeling sick last spring. In Las Vegas, Loleta Barrion had symptoms that at first felt like a cold or maybe the flu—crushing headaches, problems breathing—before realizing something more serious was going on. A laundry list of symptoms initially waylaid Zoe Kennedy of Stamford, CT, for three weeks, with her sense of smell never returning. And Christina Stanton of New York City says she had such low blood pressure that she couldn’t stand without fainting—with symptoms so severe, she ended up in the hospital, not once but twice.
Each of these women had COVID—and not one of them has returned to pre-COVID health. Men, too, experience COVID that just won’t stop, but research shows that it’s women in the 18- to 49-year-old age range whose symptoms most often linger for many weeks or even months. (That's 14.9% of women versus 9.5% of men in this group, though among those 70 and older, the differences between the sexes wasn’t significant, a 2020 study found.)
Houston, Barrion, Kennedy, and Stanton are among those in the COVID consortium who are classified—colloquially, at least—as “long-haulers.” Or, as it’s officially known in the medical community, as patients who have been diagnosed with post-acute sequelae of COVID-19 (PASC). Other names for it include post-acute COVID-19 syndrome (PACS), post COVID syndrome, chronic COVID-19, or long-term COVID.
Currently, there’s no cure for long-term COVID, though some of its symptoms can be treated. Those who actively battle it seem to have not fully recovered from the “acute” stage of infection, typically considered to be two to three weeks after onset of illness.
These women's stories are just a few of many. And the phenomena is happening to people who had mild cases of COVID as well as severe, and even to top athletes like New York Liberty guard Asia Durr, who got COVID last June and then never fully recovered. Nine months post-infection, the basketball star, who once raced back and forth across the court before cheering crowds, may remain benched when the new season potentially starts up in May (social distance-rules-willing), admitting in a recent interview that a good day now is when she feels strong enough “to do the laundry.”
Maybe you—or someone you know and love—has a similar story. Tens of thousands of Americans who had few or no chronic health issues before becoming infected with COVID are now wrapping their heads around the possibility that lingering fatigue, joint pain, loss of taste/smell, and a trove of other random symptoms affecting every area of the body, from the eyes to the toes, may last many months or years—or even forever.
Just as worrisome, some of those with long-term COVID are being diagnosed with a wide range of established chronic illnesses associated with viral triggers, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), repeated episodes of allergic anaphylaxis, and postural orthostatic tachycardia syndrome (POTs), which affects blood flow and causes a rapid, uncomfortable heart rhythm.
Again, while these specific health disorders tend to impact women more often than men, long before COVID was cause for concern, each can absolutely occur in people of all races, genders, and socio-economic classes. So, how do long-haulers cope with this new reality? And, what if—imagine just for a moment—it turns out that for some people this virus goes well beyond long-hauling? What if COVID turns into a chronic illness, or can actually cause one?
Chronic COVID Symptoms
By now, we all know that COVID-19 is a novel virus—meaning its secrets are unfolding in real time. And long-term COVID symptoms are being identified and studied not just in the U.S., but around the globe. Differing reports abound on how many people still have symptoms weeks and months after infection—and the reality is, no one truly knows the full tally, much like how we don’t have an official count for how many people have been infected. (The Centres for Disease Control and Prevention (CDC) estimates the actual number of COVID infections is higher than the current 28.9 million, based on antibody studies.)
Here’s what we do know: The National Institute of Allergy and Infectious Diseases Director Anthony Fauci, M.D., has called long-term COVID “quite real and quite extensive” in a National Institutes of Health (NIH) online workshop, and has said that an estimated 25% to 35%—or more—of people with COVID have lingering symptoms. Which potentially puts the total number of “long-haulers” into the multi-millions.
Common long-term COVID symptoms are being tracked. Researchers in Italy found that 87.4% of 143 COVID patients reported at least one symptom 60 days post-infection—and 55% had three or more. According to their research, published in JAMA in July 2020, the most common symptoms were:
Difficulty breathing (43.4%)
Joint pain (27.3%)
Chest pain (21.7%)
More research, published in The Lancet in January 2021, reports that 76% of hospitalized COVID-19 patients (1,265 of 1,655) in Wuhan, China, had at least one symptom six months after being discharged. Common long-term symptoms in that research were fatigue, muscle weakness, and sleep difficulties, as well as anxiety or depression. And in the largest global study to-date on this issue, a survey of 3,762 COVID long-haulers from 56 countries found nearly half still couldn’t work full-time six months post-infection, due mainly to fatigue, post-exertional malaise, and cognitive dysfunction.
Houston, 35, knows these symptoms all too well. Some of her well-known COVID indicators—like a persistent cough, sore throat, and fever—resolved. Others, however, have not abated. She now has chronic asthma, which she didn’t have before COVID.
“Some days it’s almost non-existent, and others I feel like I can’t catch my breath, and need my rescue inhaler,” she says. Fatigue, anxiety, and joint pain are some of her other issues. A lifestyle blogger who enjoys writing, Houston says a year out from her COVID diagnosis she loses her train of thought easily. On some days, she struggles to write at all.
Coronavirus Long-Term Effects
In the first months of the pandemic, we often heard that COVID-19 was a respiratory illness. Yet time and ongoing research reveal this isn’t the full picture. Infection can lead to widespread dysfunction, according to a study published in January 2021 in Trends in Cardiovascular Medicine, leading researchers to call it a “vascular disease,” meaning it involves the blood vessels not just the lungs.
But that’s not all. Experts surmise the “multi-system injury” (according to a 2021 study in Frontiers in Medicine) caused by COVID could lead to the varied symptoms we’re seeing all over the body. These could include (but are not limited to):
Neurologic: Brain fog, concentration, forgetfulness, loss of sense of smell and taste, and sleep disturbances
Psychiatric: Depression, anxiety, and COVID-19-associated brief psychotic disorder
Respiratory: Shortness of breath, chest pain, and low oxygen levels
Cardiac: Chest pain and cardiac dysfunction
Constitutional or musculoskeletal: Fatigue, joint, and muscle pain
Some experts suspect a rogue autoimmune response, in which the antibodies a person develops to COVID’s spike protein then go on to mistakenly attack the rest of the body. “We think that’s probably happening with fatigue, lethargy, sleep disturbances, and some of the brain fog,” says Christian Sandrock, M.D., an infectious disease and critical care physician at University of California, Davis. “But maybe not the lung and heart issues.”
It’s also been established that COVID puts you at increased risk of developing dangerous large blood clots, called deep vein thrombosis (DVT), which can then travel to your lungs (known as pulmonary embolism), possibly explaining the lung and heart connection.
“But we’re also seeing what’s called microvascular clots,” Dr. Sandrock says. “There’s clotting that’s happening at the level of the capillaries. Blood flow is altered at the tissue-level. We know people with COVID get acute strokes and acute heart attacks. But long term, we think there’s limited blood flow in the brain,” he explains.
A possible reason for loss of smell or taste and potentially cognitive dysfunction? Your cells are directly infected by COVID, particularly neurologic cells, as shown in a recent study of autopsied (deceased) COVID patients—and are damaged.
The Frontiers in Medicine authors add that it’s “not surprising” that people develop intense chronic fatigue, in particular, after COVID: Post-infectious fatigue syndromes can happen after other acute infections from viruses, including the first SARS coronavirus, Epstein-Barr virus, human herpes virus-6, Ebola virus, West Nile virus, and Dengue virus. Even Dr. Fauci weighed in, saying that those with long-term COVID can have “a post-viral syndrome that’s very strikingly similar” to chronic fatigue syndrome (now officially referred to as ME/CFS).
A Patient-Led Movement
So if you are one of those who got COVID and never shook it, where does that leave you? In December 2020, Congress approved $1.15 billion in funding to the National Institutes of Health (NIH) for a new initiative to study long-term COVID over four years. Researchers will seek answers to a host of questions, including the seemingly chronic nature of long-term COVID, using information from large databases of patients to better understand what's happening in this group.
Still, as researchers race to find treatment and relief for those struggling with long-haul symptoms, it’s not traditional bastions of scientific thought alone that are leading the way. Influential social media groups are also driving patient-led research.
One of the grassroots organizations at the forefront is Survivor Corps, which to date has attracted more than 157,000 COVID survivors to its Facebook group. It’s become one of the largest online communities supporting patient-led medical, scientific, and academic research on the novel coronavirus. Another is Long COVID Alliance, a non-profit of 50 organizations and patient groups, which has outlined key ways the NIH can use its funding to best help the long-term COVID community, including prioritizing patient engagement and inclusion.
Through their online presence and social media networks, these patient-based groups are lending much-needed support to a community that has few answers—and many questions—about symptoms that simply won't go away.
For Barrion, 63, online support has been everything. When at her sickest living in Nevada in the spring of 2020, she was hit by chronic fatigue so severe, she couldn’t get out of bed for four weeks, except for an hour each day to teach class remotely (she’s a school teacher). Today, she’s still frequently exhausted and is experiencing other long-term COVID symptoms, including brain fog and depression. Doctors don’t really know what’s going on with her condition, she says, and she’s not close to any of the clinics springing up across the country that specifically treat those with long-term COVID symptoms.
“Survivor Corps has been a blessing,” she insists. “If I have a question, I can go on there and ask other people, ‘Did you have this symptom? Did you find something to help it?’” she says. “I encourage others, even though I’m not over it.”
Diana Berrent, a COVID-19 survivor and founder of Survivor Corps, says that the group is “a forward-looking, solution-based” movement that acts as a safe online space for long-term COVID survivors to discuss their experience. “It gives people an opportunity to give back in a time when it’s very difficult to help in any tangible way,” she says.
When Does COVID Become Chronic?
So, the million-dollar question is: As symptoms linger longer and longer for some people, and as weeks become months, and months turn into more than a year, at what point does the medical community determine that COVID is a type of chronic disease?
“We don’t know yet,” admits Kate Lorig, Dr.P.H., a professor of medicine (immunology and rheumatology) emerita at Stanford University, co-author of Living a Healthy Life with Chronic Conditions, and a partner in the Self-Management Resource Centre in Aptos, CA. “We know that for a lot of people, COVID doesn’t go away in a month. But does it go away in two years? At least for those people that seem to have longer-term effects, it makes sense to treat it as a chronic disease for now.”
It may be useful to understand “COVID as chronic” through the lens of other chronic disorders, Lorig explains. Having a chronic illness generally means you live with it for life, as is the case with autoimmune disorders such as rheumatoid arthritis (RA) and Crohn’s disease. They often come with periods of remission—when you feel better—and relapses (or flares), when you feel worse. Is that where we’re headed with COVID?
“It all depends on the disease,” says Dr. Sandrock, who is a member of the multidisciplinary team at UC Davis Health’s Post-COVID-19 Clinic, one of those post-COVID clinics at non-affiliated institutions around the country. “It can be months to years,” he explains. “[With COVID], so far we’re looking at it in terms of months. If you’re 60 days out from your acute infection, that’s what we [at UC Davis] call post-acute COVID syndrome. But I don’t know yet if this will become years.”
Kennedy, 27, gets that. First infected in March 2020 (likely from her work in a busy grocery store, she believes), the muralist and anime artist was hit with a checklist of common symptoms, including the loss of taste and smell. Her ability to taste her food eventually returned, but, months on, smell continued to elude her. So, she saw an ear, nose, and throat specialist last fall. The good news: Her nose was just fine. But because her sense of smell hadn’t returned and there was nothing physically wrong with her sniffer, she might never get it back, her doctor told her. Ever.
Now, twelve-months post-infection, she says losing one of her senses has made normal things hard—like being able to tell if her food is burning when she cooks. Equally tough? Knowing she can’t smell her favourite dessert, strawberry rhubarb pie, something her late grandmother liked to make for her.
While Kennedy is not Dr. Sandrock’s patient, he says that the literature has shown that by 60 days after your first COVID symptoms, about 70% of people get some sense of their taste/smell back. But the remaining 30% don’t, and may not.
“It’s kind of hard to say whether this is going to be really permanent,” Dr. Sandrock says. “But generally, if those cells died off, they usually take a couple months to grow back. If you’re six or seven months in and they haven’t grown back, that’s kind of concerning.”
The COVID Vaccine and Long Haulers
One positive to report: Some people with long-term COVID say their symptoms are decreasing after the first shot of a COVID vaccination. As more people are vaccinated, we’ll learn more—including from groups like Survivor Corps, which is tracking people’s responses to the vaccines, and how receiving a vaccination impacts those with long-term COVID symptoms.
Can such symptoms be stopped—or will long-term COVID be added to a long list of other established chronic disorders? (It certainly wouldn’t be the first time a virus caused post-infectious fatigue syndrome, it must be noted.)
The future remains uncertain. Stanton, 51, who’s written a book about her experience of struggling with long-term COVID, says having never-ending symptoms from the illness has changed her life. Making it to 50 without ever before facing anything physically debilitating, she figures she’s now entered an “era of health issues.” A forecast for millions, perhaps? Only time will tell.