Five Years Later: New Yorkers with Long COVID Juggle Illness and Doubt

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Extreme fatigue, brain fog, and long-term gastrointestinal issues are a few of more than 200 symptoms of Long COVID.

“Short answer, it sucks,” said Jamie Sanin, founder of Celebrate845, a mutual aid and arts organization that distributes free masks and COVID tests throughout the Hudson Valley.

Long COVID is a chronic illness that happens after a person who has a COVID infection experiences symptoms for more than three months, according to the U.S. Center for Disease Control and Prevention .

Five years after former New York Governor Andrew Cuomo declared a statewide lockdown to curb the spread of COVID in March 2020, many New Yorkers have not yet returned to daily life. Nearly 7% of the U.S. population – or 17.8 million people – have had long COVID as of early 2023, data shows.

Since 2021, Sanin has developed COVID-conscious resources to help New Yorkers create safe spaces for Long COVID haulers, find free testing kits and masks, and help people connect with others with similar values. To date, Celebrate845 has distributed over 3,000 rapid tests across New York and talked to dozens of people affected by Long COVID.

“There’s a lot of grief that comes with it… grief around your body used to [being able to] do certain things and now it can’t or it’s harder,” said Sanin.

Who develops Long COVID can be unpredictable, according to Dr. David Putrino, Director of Rehabilitation Innovation for the Health System at Mount Sinai Hospital.

“We don’t seem to have any rhyme or reason to who is going to get sick and then fail to recover,” said Putrino. “That’s one of the more troubling aspects of Long COVID is that it’s really hard for us to predict who’s going to develop it.”

Long COVID patients fighting to be believed

For Long COVID haulers, getting others to even believe that they are sick is the first and, sometimes, most challenging step. Putrino said that his patients are often told that their symptoms are psychological or stress-induced.

Since the beginning of the COVID pandemic, Putrino has treated patients with Long COVID at Mount Sinai Hospital’s Cohen Center for Recovery From Complex Chronic Illnesses, a specialized clinic in New York City for Long COVID treatment and other chronic illnesses.

“The first thing that they should hear is that this is something that is relatively common and many people are going through it, so it’s real,” said Putrino. “It’s just extraordinarily hard to find someone who’s willing to actually believe that they’re sick, let alone provide them with skilled options for care.”

Lack of testing and training to diagnose Long COVID also adds to skepticism and confusion within the medical field.

“We do not have any specialized tests to actually be so granular to diagnose long COVID,” said Theresa Versano, Director of Rehabilitation Services at Ellenville Regional Hospital in Ellenville, New York. “There’s nothing coming up on any kind of lab work or X-rays or pulmonary function test. Everything that you would think would be able to find Long COVID or diagnose it isn’t there yet.”

Putrino said that while his team at Mount Sinai has been working to educate primary care physicians and medicine doctors on diagnosing Long COVID, “we have a lot of work to do. There’s a lot of education that needs to occur.”

Ellenville Regional Hospital is one of the few Long COVID recovery programs available in the Catskills region. Versano said that they created a dedicated rehabilitation program for Long COVID patients after noticing some patients kept returning to the hospital under the same or worsening conditions. Patient age ranges anywhere from 26 years to 84 years, said Versano.

Ellenville patients come in twice a week, focusing on physical therapy exercises that target long COVID symptoms like improving their balance and respiratory system. Versano said that validating what patients are feeling and setting clear expectations are important steps towards recovery.

“Having that same therapist with them to again, validate, to reassess, and also validate to them [that] we are limited with our resources right now in the medical world. We can’t give you why this is. What we can do is try to work through it and show you what’s been working evidence-based at this point,” she said.

However, Sanin of Celebrate845 cautioned that those taking extra safety measures may struggle to access healthcare.

“It’s like, are you taking the train? That might not feel safe. Are you taking the bus? That might not feel safe. Do you have to drive? There’s just so many factors… to physically getting to the care if the care is even available,” said Sanin.

Rural providers navigate resource gaps and budget cuts

Accessing care in a rural area has its own set of challenges. A 2022 Journal of Rural Health study suggests that the overall rate of COVID infection and subsequent mortality in rural communities is higher than in their urban counterparts. Unemployment gaps in rural communities can also be a financial barrier for people who may not have the income or employment for health insurance or to afford treatment for long COVID. Versano of Ellenville Regional Hospital adds that rural hospitals often lack resources available to urban hospitals.

“When you look at Long COVID, the programs down in the city, they’re doing a lot of lab work with it as well as having a pulmonologist there to see pre- and post- exams to see how they’re doing. We really don’t have that data here. We don’t even have a pulmonologist here in rural health to do that.”

Providers are navigating resource gaps while sweeping federal cuts hit the National Institute of Health and the Center for Disease Control – two federal agencies critical for providing COVID data and resources. In March 2025, the U.S. Department of Health and Human Services announced they would cut $11.4 billion allocated to fight the COVID pandemic.

Putrino of Mount Sinai Hospital said that access to reliable data on COVID has already disappeared under the Trump administration. The CDC Household Pulse Survey is one dataset Putrino’s team has used to track Long COVID data that has since been “archived for historical purposes and is no longer being updated,” according to the CDC website.

“It’s a real big loss of reliable data,” said Putrino.

At the grassroots level, Jamie Sanin of Celebrate845 is focused on mobilizing residents. They’ve been using art and online resources to remind people why masks are important in the first place – and where to find them. To date, Celebrate845 has set up free PPE distribution hubs at more than 30 locations across New York.

“There are a lot of tools that are just gonna help stay safer, and it’s actually going to make the spaces more accessible. Why wouldn’t you want that?” said Sanin.

Looking for Long COVID recovery programs? People can find a state-by-state directory of Long COVID clinics on Long COVID Alliance . The NYC Health Department has a list of COVID care clinics in New York City.

(Featured image provided by Keith Edwards at Ellenville Regional Hospital)