In the pandemic era, we have learned a lot about the COVID-19 virus — how it moves, what it does inside our bodies and ways we can combat it. As we coexist with the virus, we’re coping with its shadow: long COVID.

There is a lot we still don’t know about long COVID, an umbrella term for chronic conditions in which a person suffers other health problems for weeks, months or even years after the original infection. Currently, there is no cure for long COVID.

But experts have made progress, and in New York City, residents have options for seeking care. 

THE CITY first wrote a guide on seeking help for long COVID in January of 2023, but a lot has changed since then. We have adapted that article here with the most up to date information about the condition, how to seek medical help in the city, and how research has advanced. 

We’ll continue to update this guide as knowledge about long COVID continues to evolve. If you have coping strategies, insights, advice or questions, we want to hear from you. Get in touch with THE CITY newsroom at [email protected].

How likely am I to get long COVID?

According to the Household Pulse Survey conducted monthly by the CDC since 2020, approximately three in every ten COVID infections develop into long COVID, defined by the CDC as symptoms that persist for at least three months following the initial infection.

Studies from places like the peer-reviewed journal Viruses and reports from the National COVID-19 Cohort Collaborative show that the odds increase after each repeat infection. So if you have had COVID multiple times, you’re at a higher risk for developing long COVID.

People who had severe COVID infections, have underlying health conditions such as diabetes or heart disease, or did not get vaccinated against COVID are more likely to develop long COVID, according to the National Institutes of Health. Women and Latinos are also more likely to develop long COVID, according to a survey conducted by the U.S. Census Bureau. 

What are the symptoms?

According to the National Institutes of Health, different studies have found over 200 symptoms associated with long COVID. The most common are:

• Coughing or feeling short of breath
• Loss of smell or change in taste
• Brain fog, or feeling like you can’t think clearly
• Fever
• Trouble sleeping
• Fatigue
• Body aches, headaches, chest pain, or stomach pain
• Mood changes

There is currently no biomarker for long COVID, meaning there is no one way to test for or identify the condition, or for doctors to predict how serious a case of long COVID can get. A diagnosis typically involves a thorough health history and ruling out other health conditions, according to researchers at Yale Medicine. 

How serious is it?

Long COVID symptoms can range from fairly mild to very severe. According to research from the National Academies of Science, Engineering, and Medicine, long COVID at its worst can cause organ system failures, cardiovascular disease, autoimmune disorders and more. In some cases, long COVID can result in a long-term disability.

However, other long COVID cases are chronic, but mild or moderate. For instance, according to this 2023 study published in the Journal of Global Health, the most common symptoms of their participants experiencing long COVID were fatigue, loss of smell and muscle pain, though the study did not measure the degree to which these symptoms impacted participants’ day-to-day lives.

Can I get long COVID if I was asymptomatic?

Yes. One challenge of diagnosing long COVID is that many patients do not know they had a COVID infection to begin with. This is especially important to note as testing practices have changed in the United States and testing rates have generally decreased over the last few years across the globe. 

Fortunately, you do not need a formal COVID diagnosis in order to be diagnosed with long COVID, although it may be helpful for your doctors to narrow down the possibilities.

What’s the impact of long COVID for kids?

Researchers have struggled to get conclusive data on what pediatric long COVID looks like for a few reasons. According to Megan Carmilani, president of the nonprofit group Long Covid Families, diagnosing long COVID often relies on a patient’s ability to describe the inner workings of their body. 

“Toddlers can’t tell you that they lost their sense of taste or smell, they might just suddenly refuse to eat,” says Carmilani. “Small kids may tell you that their throat hurts when they actually mean their neck, or tell you that their legs hurt instead of describing fatigue.”

Additionally, the vaccination rate for children is very low. As of May 2024, only 14.4% of children were reported to be up to date with their COVID vaccination, according to the CDC. Across the board, researchers agree that vaccination is an effective tool in mitigating long COVID symptoms. 

Like adults, children can get long COVID even if their case of COVID was mild or asymptomatic. Pediatric long COVID symptoms can present similarly to adult symptoms and can also include feeling very tired, struggling to carry out daily activities, not wanting to eat, having trouble playing or doing school work, having trouble being active, or having trouble getting ready in the morning, among many other possible symptoms, according to the National Institute of Health. 

What do I do if I think I or my child have long COVID?

If you suspect you have long COVID, schedule an appointment with your healthcare provider, ideally your primary care physician. Because long COVID can have multiple systems, they will be able to consider your full medical history and refer you to specialists based on your symptoms. There are a few things the CDC recommends before your appointment:

• Track your symptoms for as long as you can. Long Covid Families has a Symptom and Activity Journal available for , as does NYC Health + Hospitals. Tracking can help you and your doctor notice patterns, such as what times of day your symptoms tend to flare up and whether or not specific activities impact them. 
• Write down your medical history and list of current medications to have as easy reference at your appointment.
• Write down any questions you have for your doctor. Especially for patients suffering from fatigue or brain fog, documenting your concerns and notes is important.

Where can kids get treatment for long COVID in New York City?

Not every long COVID care clinic will provide pediatric services, so be sure to ask when setting up your appointments whether or not the clinic treats children. The nonprofit group Long COVID Families keeps an updated list of clinics that will treat pediatric long COVID, and the only one in the five boroughs is the Richmond University Medical Center in Staten Island. There is also a pediatric post-COVID care program in Livingston, New Jersey at the Cooper Barnabas Medical Center.

What if my doctor doesn’t take me seriously?

Studies have shown that long COVID patients can struggle to find care in part because medical providers can dismiss or delay treatment. Because long COVID is a relatively new disease, many doctors are not yet well versed in diagnosing or treating it. 

Dr. Seth Congdon, who leads Montefiore’s COVID-19 Recovery (CORE) Clinic, recommends working with your primary care physician because they have the best understanding of your medical history, but don’t stay if you aren’t feeling helped.

“If you have a primary care doctor that is kind of dismissive, or doesn’t seem to be taking it seriously, try to find a different one,” said Congdon to THE CITY in 2023.

NYC Health + Hospitals has a Primary Care Hotline for New Yorkers to book an appointment at 844-NYC-4NYC or 844-692-4692. New York City is home to many clinics that specialize in long COVID care and can offer you primary care, more on that below.

What if I don’t have health insurance?

NYC Health + Hospitals has a program called AfterCare that connects New Yorkers to COVID , which can include connecting you with primary care physicians as well as financial . You can also visit the COVID-19 Centers of Excellence in The Bronx, Jackson Heights, or Brooklyn, where you can be seen “regardless of ability to pay, immigration status or gender identity,” according to H + H.

Who can I turn to for help other than my primary doctor?

If you are looking for treatment options beyond just your primary care doctor or would like to see a healthcare provider specializing in long COVID, New York City has 18 long COVID clinics across the five boroughs and across several healthcare systems, including NYC Health + Hospitals, Northwell Health, NYU Langone, Columbia University Irving Medical Center, and more. 

Again, NYC Health + Hospitals services are available to all New Yorkers regardless of ability to pay, insurance coverage, or immigration status. Other facilities may have different policies including payment plans or sliding scale payments, so be sure to ask about costs when deciding which care provider is right for you. 

What are the treatments for long COVID? What can I expect?

There is currently no cure for long COVID, so current treatments are focused on managing its symptoms. 

Dr. Rachel Engelberg, the clinical lead of the Center for Post-COVID Care at Mt. Sinai, describes every treatment plan as unique to the patient.

“When I first see a patient, after I take their full medical history, I ask them about their most bothersome symptoms,” said Engelberg. From there, they come up with a treatment plan that addresses those worst symptoms.

In a 2024 report from the U.S. Food and Drug istration, long COVID patients reported that their treatment plans included prescription and non-prescription drugs, physical rehabilitation, vitamins, supplements, dietary modifications and other therapies.

Because there is no cure for long COVID and it will be several years before clinical trials (more on that below) are conclusively wrapped up, your best bet is to work with your healthcare provider on how to manage your symptoms. 

How are the clinical trials for long COVID treatments going?

Currently, there are many clinical trials for long COVID happening through the Researching COVID to Enhance Recovery (RECOVER) Initiative funded by the National Institutes of Health. These trials, many of which started in 2023, will take several years to reach their conclusions and then have those integrated into medical practice.

The RECOVER Initiative is focused on Phase 2 clinical trials right now, meaning they are focused on the effectiveness of different treatments for the following five symptom categories of long COVID:

• Autonomic dysfunction, meaning changes in body functions that happen automatically resulting in things like dizziness, fast heart rate, shortness of breath, upset stomach
• Cognitive dysfunction, including brain fog, memory changes, and slowed attention
• Exercise intolerance and fatigue
• Sleep disturbances
• Viral persistence, meaning the Coronavirus itself stays in the body and causes damage to organs or blocks the immune system from functioning properly

There are eleven clinical trials happening at different research centers across the country, each with 100 to 300 participants. 

How can I sign up for a clinical trial?

Subjects for the clinical trial are typically connected through their long COVID healthcare provider, so if you are interested in participating in a clinical trial, talk to your doctor. You can also sign up for RECOVER’s monthly newsletter to receive updates and calls for s. 

Though clinical trials are more exclusive, interested people should also look into observational cohort studies, where you can be paid to do tests and have check-ups but are not given treatment or medicine. RECOVER is still recruiting interested participants for these studies across the country, and a handful of studies are happening here in New York. To learn more about the observational cohort studies, check out RECOVER’s Studies page. 

Can I get disability accommodations or benefits for having long COVID?

Long COVID is recognized under the Americans with Disabilities Act as a condition that may result in a disability. In order for you to be classified as disabled by long COVID, it must substantially limit one or more major life activities, as defined by the ADA.

This includes a wide variety of activities, including but not limited to caring for yourself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, and many more. The term “major life activities” also includes the operation of a major bodily function, such as the functions of the immune system, cardiovascular system, neurological system, circulatory system, or the operation of an organ.

Not every case of long COVID will result in disability, and in order to determine whether or not you can receive help, there are a few sources you can turn to. Ask JAN is a free service offered by the Job Accommodations Network of the U.S. Department of Labor’s Office of Disability Employment Policy to help you navigate your rights in the workplace. And these tips from attorney Andrew Kantor outline how to apply for short and long-term disability benefits with long COVID. It’s among resources from Body Politic, a wellness collective founded in 2018 that shifted their efforts to include for people suffering from COVID and long COVID.

Another resource to utilize is your healthcare provider, especially if you are receiving care at a long COVID clinic. The providers at these clinics can often walk you through the steps you need to take and the paperwork to submit in order to receive disability from the government. 

How can I prevent long COVID?

The CDC emphasizes a few major strategies for preventing long COVID, with the most certain being not getting COVID in the first place. Stay up to date with vaccinations, wear a mask in high-traffic places with poor air flow, take steps for cleaner air to prevent respiratory infections,  and monitor local conditions for COVID to see how much transmission is happening. 

Where can I learn more about long COVID?

This guide is meant to be a primer on the most frequently asked questions around long COVID and a jumping-off place to learn more. But it can’t replace medical advice or direct medical advocacy. 

Many people suffering from long COVID have found and valuable information in the form of patient-led organizations and groups:

• Black COVID-19 Survivors Alliance emerged as a Facebook group in 2020 to African Americans and Black people impacted by COVID. It has grown into a grassroots self-help and patient advocacy organization. 
• Long COVID Families is a nonprofit organization that s people with infection-associated conditions, including parents and caregivers of children with long COVID, and has a Facebook group.
• The Network for Long COVID Justice is a national, grassroots advocacy project in of people with long COVID and related conditions. On their website, they recommend a number of groups. 

Many patients, patient advocates, and health professionals also recommend the book The Long COVID Survival Guide, edited by Fiona Lowenstein, journalist and founder of the COVID group Body Politic. 

We’ll continue to update this guide as knowledge about long COVID continues to evolve. If you have coping strategies, insights, advice or questions about long COVID, we want to hear from you. Get in touch with THE CITY newsroom at [email protected].