How to Navigate Long COVID
Anywhere from 10 to 30 percent of people who get COVID-19 experience crushing fatigue, breathlessness, brain fog, or other symptoms long after they first got sick. Here, what to know and how to find care.
By Kevin Loria
During the first wave of COVID-19 in the U.S., healthcare providers reassured countless sick people that unless they needed to be hospitalized, they would be better in a few weeks. But many people, even some with relatively mild cases, were not better in a few weeks. Or even in a few months.
The ongoing condition came to be known by a variety of names, including post-acute sequelae of SARS-CoV-2, or, more familiarly, long COVID.
Today, experts estimate that between 10 and 30 percent of people who have had COVID-19 experience symptoms that occur at least a month after their initial infection. There could now be more than 27 million people in the U.S. affected by long COVID, according to the American Academy of Physical Medicine and Rehabilitation.
The effects can be debilitating, according to a Consumer Reports July 2022 nationally representative survey of 2,125 U.S. adults (PDF). It found that 18 percent of people who had COVID-19 developed or still had symptoms at least four weeks after getting infected—symptoms that were severe enough to make it difficult to return to normal activities.
Although clinics have opened to help these patients and more than a billion dollars is pouring into the National Institutes of Health to study long COVID, that wasn’t always the case. Instead, as in the early days of other diseases, such as AIDS, people with long COVID have had to play an active role, first in convincing medical providers that their symptoms were real, then in advocating for research into how to treat them.
Now, while much still remains unknown, the combined efforts of early patient activists, committed scientists, and healthcare providers are starting to pay dividends, with clearer advice for patients seeking support and treatment.
An Emerging Condition
In many ways, long COVID resembles the long-term conditions some people have experienced after other viral diseases, including dengue fever, SARS, and certain strains of influenza. For many of the first people to experience long COVID, the unexpected worsening symptoms were frightening and perplexing.
Chimére L. Smith, 40, was a Baltimore teacher when she got COVID-19 in March 2020. “I felt this very hot burning sensation in my spine, [and] I could not do anything without getting very winded,” she says. “I stopped being able to read sentences together.” And, alarmingly, instead of improving over time, her symptoms worsened.
“I ended up going to the hospital 13 or 14 times over six months in 2020,” she says. “I thought I was going to die.”
Two years later, Smith’s symptoms have improved, but she is still dealing with a number of issues, including fatigue and chronic migraines.
To make matters worse, many with long COVID say they faced disbelief when first seeking care, especially if they got sick early on or didn’t have severe COVID-19. Chris Dansereau, 48, an information technology technician in Massachusetts who also had COVID-19 in March 2020, says his provider initially attributed his ongoing symptoms to anxiety.
That’s why many researchers now emphasize that despite continued unknowns, there’s no doubt that long COVID is “a real thing,” says Kathleen Bell, MD, former chair of the Department of Physical Medicine and Rehabilitation at UT Southwestern Medical Center in Dallas. Clarity has emerged in part simply because so many people—nearly 600 million worldwide—have now had COVID-19. And many of them have developed long COVID.
Its widespread impact has accelerated research into the condition. In June 2021, the Centers for Disease Control and Prevention released guidance to help medical providers understand and treat people with post-COVID conditions. Patients themselves played a key role in developing that guidance, sharing their experiences as they fought to get long COVID recognized and helped each other navigate the condition, says Fiona Lowenstein, who co-founded the Body Politic COVID-19 Support Group.
Thanks in part to these efforts, some people are finally starting to get relief—including Dansereau.
He has had several relapses and still has some blurred vision, leg swelling, and “a little bit of brain fog,” he says. But two years after first experiencing long-COVID symptoms, “the trouble breathing, low energy levels, and heart palpitations, that’s gone for me,” Dansereau says. And when relapses come, he says, he now knows that “you feel like this is permanent, but it’s going to get better.”
A Wide Variety of Symptoms
People with long COVID have cataloged dozens of associated symptoms, but a few stand out. Those include fatigue and breathing discomfort, as well as cognitive dysfunction such as brain fog, which is characterized by problems with memory, finding words, and the ability to focus.
Other reported symptoms include stomach and other issues such as heartburn, constipation, and diarrhea; dizziness and rapid heart rate; problems sleeping; and persistent loss of smell, though it appears less common in patients infected with the omicron variant of the disease, according to Bell.
The severity of symptoms also varies widely, says Benjamin Abramoff, MD, who is director of Penn Medicine’s Post-COVID Assessment and Recovery Clinic in Philadelphia and has helped develop clinical guidance for treating various symptoms of long COVID. For some, fatigue might prevent a regular runner from getting back to their routine. For others, it can be so intense that they can’t even get out of bed.
Researchers are still trying to figure out the biological mechanisms behind these symptoms. Some think that SARS-CoV-2 could leave behind viral particles or even a hidden, ongoing infection—in the gut, for example. Others think tiny blood clots or damage to small blood vessels could play a role, affecting blood flow to the brain and other vital organs. The virus could also trigger an autoimmune reaction, where the body creates antibodies that attack healthy cells, Abramoff says. And Bell says that “everybody is pretty convinced there is an element of persisting inflammation,” perhaps a reaction to viral particles or damage from the initial infection.
How to Find Relief
Because research on how to best treat long COVID is still emerging, many patients have worked with one another in online groups and collaborated with researchers to share what helps them most. Here are suggestions from such patients, as well as doctors like Abramoff at Penn Medicine and Bell at UT Southwestern Medical Center.
• Start with your primary healthcare provider. With long COVID now so common, there’s a good chance that your regular healthcare provider has at least some experience with it. They may also be able to rule out other health issues, provide referrals, and generally keep track of your progress.
There’s no one medication that will help everyone with long COVID, but doctors can try to address certain symptoms with prescription drugs. For example, steroids might be used for some people to tamp down inflammation, Bell says. Stimulants such as modafinil are sometimes used to treat fatigue. In small studies, doctors are testing whether antiviral treatments like Paxlovid, used to treat COVID-19, might inhibit the virus. But right now, “you have to do individualized treatments, not one size fits all,” Bell says.
Your regular healthcare provider may also be able to help by diagnosing long COVID in the first place. Some people might not realize that their symptoms are a result of a prior COVID-19 infection, says Smith, the Baltimore teacher. That prompted her to do outreach in high-risk communities, where COVID-19 hit hard and information about long COVID is less available.
• Look for a long-COVID clinic. If your symptoms are particularly severe, multifaceted, or long-lasting, consider looking for a clinic that focuses on the condition. Care at such clinics is often led by a physiatrist—a doctor who focuses on rehabilitation—who can help coordinate with other specialists you may need.
But be forewarned that such care can be hard to find. “There is absolutely a dearth of clinics or practitioners who have a good handle on how to evaluate and treat post-COVID,” Bell says. That can mean long waiting lists. If you do get an appointment, there’s no guarantee of relief, say patient experts such as Lowenstein. Still, some people are helped. Search for providers at Survivor Corps, which has a list organized by patient-led support groups.
• Consult with a specialist experienced in your symptoms. Some people with severe fatigue from long COVID have found that doctors who treat myalgic encephalomyelitis, aka chronic fatigue syndrome, can offer some help, Lowenstein says.
Similarly, those with dizziness or heart palpitations may work with a cardiologist experienced in treating a condition called postural orthostatic tachycardia syndrome, which causes a similar set of symptoms.
People with brain fog might benefit from testing by a neurologist or a neuropsychologist. “The idea is not just to determine what cognitive areas may be challenging but also to identify relative strengths,” says Steven Flanagan, MD, who specializes in brain injury rehabilitation at NYU Langone Health in New York City. That allows providers to “develop compensatory strategies for identified areas of weakness.”
An occupational therapist might also help with brain fog by using cognitive rehabilitation. For example, multitasking can be hard for people with brain fog, Bell says. Learning to stay focused on one task at a time can help people avoid being overwhelmed.
People who have lost smell and taste could try olfactory or smell training, which involves relearning scents over time through practice with strong-smelling items like coffee and perfumes. Check out the resources offered by AbScent, an organization for people with smell loss, or consult with an ear, nose, and throat specialist.
• Consider making dietary changes. Many people with long COVID have tried to address symptoms by changing their diet. Dansereau, the IT technician, for example, adopted a Mediterranean-style diet. “Once I got my diet under control, symptoms gradually subsided,” he says. The Mediterranean diet—high in vegetables, fish, and healthy fats—which is considered anti-inflammatory, is recommended for long-COVID patients by the British Dietetic Association.
Some people notice an improvement when they eat a low-histamine diet, limiting cheeses, fruits, seafood, and nuts, according to the American Academy of Physical Medicine and Rehabilitation. Others have tried eating frequent small meals to help stabilize energy levels, a common strategy for people with chronic fatigue syndrome.
Still, caution is warranted: No one dietary approach yet stands out as being especially effective, Flanagan says, though “adopting a good, well-balanced diet” may help.
And JD Davids, who co-founded the Network for Long COVID Justice, a consortium of patient-led long-COVID groups, says to be skeptical about advice involving expensive supplements or dramatic dietary changes. Discuss any significant changes you are considering with your physician or a dietitian.
• Stay active—but don’t overdo it. Some people with long COVID have found relief through carefully structured activity programs or physical therapy. Such programs should be individualized based on a person’s capacity for exertion, according to medical experts. This may involve a specialist like a cardiologist prescribing a specific amount of activity.
Guidance on treating long COVID emphasizes that patients should be careful not to push too hard. Working out too intensely may worsen symptoms, a problem so common it has a name: “post-exertional malaise.”
Angela Meriquez Vázquez, a COVID-19 long-hauler who is now the interim president of Body Politic, says that’s what happens to her. “I could go for a 3-mile run right now—I believe my body with enough adrenaline could do that,” she says. “But I would pay the consequences for a month.”
Experts recommend pacing yourself. “I encourage folks to remain physically and cognitively active but without going to the point of exhaustion . . . and building up slowly over time,” Flanagan says. For Dansereau, that meant “gradually each day trying to build activity just a little bit more.”
If you have trouble breathing, Abramoff, at Penn, recommends breathing exercises, such as pursed lip breathing, where you breathe in through your nose, then exhale through pursed lips for twice as long. Some patients may qualify for pulmonary rehabilitation, where you work with a respiratory therapist on techniques to help avoid feeling out of breath.
• Identify your triggers. Lowenstein, formerly at Body Politic, recommends tracking your fatigue, brain fog, and other symptoms, trying to see if you can identify a trigger, such as staring at a screen or sitting up for too long.
• Find support. Many people find it helpful to connect with others having a similar experience, says Davids, the long-COVID patient advocate. “There’s a whole world of people out there who aren’t providers who will help you figure out how to live,” he says.
Take care not to send yourself on a worry spiral by focusing just on concerning posts, Dansereau says. Look for success stories, and tips from people who say they are getting better.
• Get insurance to pay. One sign that long COVID is gaining medical legitimacy is that there is now a diagnostic code for it. That means healthcare providers can more easily bill insurers, and insurers may be more likely to cover it. Smith, in Baltimore, has fought to ensure that doctors link her symptoms to long COVID in her medical record—and that they know the code: ICD-10 code U09.9.
Even with that code, insurers may refuse to cover care if they don’t consider it “medically necessary” or if you exceed a certain number of appointments with physical or occupational therapists. If that happens, you can appeal with the insurer and, if that fails, request a third-party review.
One other potential problem: In response to the pandemic, Congress temporarily expanded subsidies to people with Affordable Care Act health insurance plans. But this is not permanent and could be rolled back, says Katherine Hempstead, PhD, a senior policy adviser at the health-focused Robert Wood Johnson Foundation. Making the subsidies permanent and expanding Medicaid “are the biggest opportunities we have to make sure everyone has access to treatment,” she says.
• Apply for disability benefits. Long COVID can qualify as a disability when it substantially limits major life activities, according to the Department of Health & Human Services. That means housing accommodations and other protections under the Americans with Disabilities Act may be accessible, and you may be eligible for employer leave.
Qualifying for disability income can be more challenging, in part because long COVID is so new and poorly understood. Someone must show they have been or will be unable to work for at least 12 months. Historically, most people applying for disability income are denied.
In a 2021 speech, President Biden acknowledged the urgent need for such services. “We’re bringing agencies together to make sure Americans with long COVID have access to the rights and resources that are due under the disability law,” he said, “so they can live their lives in dignity and get the support they need.”
To find more information and resources for people with long COVID, go to the federal government’s long COVID guide.
Are You at Risk for Long Covid?
Anyone who has had COVID-19, including those who’ve had it more than once, can get long COVID. But here is who is more likely to experience it.
Women
Research suggests women are about 20 to 50 percent more likely to experience long COVID than men, for reasons that are still unclear.
Adults Ages 45 to 69
The risk of lingering COVID-19 symptoms appears to rise steadily from young adulthood to about age 69, then tapers off.
People With Chronic Disease
Those with type 2 diabetes seem to face a particularly high risk of long COVID, as do those who are overweight or have asthma.
People Who Had Severe COVID-19
People hospitalized with COVID-19 may be at higher risk of developing long COVID, according to a May 2022 analysis of 78,252 patients. About 24 percent of people with long COVID in that analysis had been hospitalized with COVID-19. By comparison, only about 8 percent of people with COVID-19 overall had ever been hospitalized with the disease.
The Unvaccinated
Getting vaccinated and boosted may reduce the risk of long COVID by lowering your chance of getting sick in the first place and, if you do get COVID-19, by lowering the chance that your case will be severe. But exactly how much protection vaccination offers is uncertain, with one study showing a 50 percent reduction and another as little as 15 percent.
People With Greater Exposure to COVID-19
Because of existing health inequities and higher risk of exposure to the virus, communities hardest hit by the pandemic—including Black, Latino, and Indigenous communities—also appear to be at higher risk for long COVID, says Georges C. Benjamin, MD, executive director of the American Public Health Association. They may also be less able to get adequate care for the condition, he says.
What You Can Do
The best advice for avoiding long COVID is the same as avoiding COVID-19 itself. That means making sure you are up to date on vaccines, including boosters. And consider wearing a mask in crowded indoor places, especially when COVID-19 risk is higher, says Bell, of the UT Southwestern Medical Center. For example, she says, “I am going to wear a face mask every time I get on a plane, a train, or a bus.”
Editor’s Note: This article also appeared in the October 2022 issue of Consumer Reports magazine.
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