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.