NYC universities pioneered long COVID studies. A look at what they know (and don’t) years in.

Since the start of the pandemic, New York City has been a hub for researchers studying long COVID, the lasting illness that occurs after 10% to 30% of coronavirus infections. The city has reportedly more clinics dedicated to this condition than anywhere else in the country, some of which are leading scientific projects to better understand why some people’s bodies get stuck with the chronic condition — though patients who visit the clinics described problems with coordination and frustration at the slow pace of answers from the research.

Long COVID can impact every organ system in the body. Some patients see 10 or more different specialists, each doctor providing care for different symptoms. At academic clinics, New Yorkers with long COVID are not only studied but can receive care from a variety of specialists, much like publicly run programs.

These clinics — including centers at Mount Sinai, NYU and Columbia University — are unique in their focus on scientific research, compared to those like NYC Health + Hospitals COVID Centers of Excellence, which prioritize care over compiling data.

But university care can also be expensive and not well-coordinated, according to about 10 patients who have visited the clinics, and the results of the research may take years to deliver meaningful information.

Mount Sinai’s COVID-19 Registry, a research program that’s been operating since spring 2020, is focused on describing the condition rather than testing treatments. That’s because long COVID is a complicated disease, reflecting a wide spectrum of potential biological causes and symptoms that researchers have yet to fully understand. The RECOVER initiative, a national effort led by NYU, launched over a year ago but won’t start its clinical trials until January 2023.

“I was just being taken from doctor to doctor to doctor,” said Zahava Mandelbaum, a patient who went to Mount Sinai’s clinic in late 2020 and early 2021. “And none of the specialists were communicating with each other about me.”

Combining care and research

Mount Sinai opened its first long COVID clinic in May 2020, about the same time as it launched the registry.

Like other doctors treating COVID-19 in the city, the Mount Sinai team “noticed that a lot of patients were still sick after the initial two weeks” despite public health guidance at that time, said Dr. Zijian Chen, director of the early clinic. To treat these patients, Chen and his colleagues dedicated a place for people who hadn’t recovered.

Word quickly spread among New Yorkers with long COVID and by the fall, there was a waitlist of several months for appointments. When Rose Friedman, a patient based in Brooklyn, first called the clinic in spring 2021, the next available appointment was in November, she said. (She ultimately managed to get an earlier appointment in May due to a cancellation.)

Early in the Mount Sinai clinic’s operation, the center wasn’t able to offer specific treatments to patients with more complex symptoms like brain fog and chronic fatigue, as physicians were still learning to treat this new condition, said Friedman and others who visited during that time. But one advantage quickly became clear: patients who visited did not face the confusion and dismissal they said they experienced with other doctors.

The physician who ran Friedman’s intake appointment “was the first doctor to sit down and ask me questions about what was going on in every part of my body,” she said.

In tandem with its clinical practice, Mount Sinai started its COVID-19 Registry, which collects information about long COVID through medical testing and patient surveys. The goal of this registry is to provide a comprehensive dataset for long COVID research at Mount Sinai and other institutions, along with a pool of people who could be entered into clinical trials to find remedies, Chen said. About 1,800 patients are included in the registry as of early December, said Mount Sinai spokesperson Ilana Nikravesh.

Along with answering questions about their symptoms and demographic information, patients contribute to a biobank — a repository of specimens from different parts of the body that can be analyzed for research. Blood samples from the biobank enabled a recent study by Mount Sinai researchers showing that people with long COVID have distinct genetic changes, suggesting one way that coronavirus infection might lead to long-term symptoms.

RECOVER, a national initiative funded by the National Institutes of Health, is collecting long COVID data on a larger scale. More than 11,600 people have enrolled in this study at 53 sites across the country. NYU Langone is managing this research, and Mount Sinai is a participant. Although the national study is no longer looking for long COVID patients to join, NYU investigator Leora Horwitz said during a webinar this fall, it is still seeking people who don’t have this condition who can be compared to patients as a control group.

So far, RECOVER has primarily focused on understanding long COVID through extensive medical testing of different organ systems, ranging from brain scans to colonoscopies. The initiative’s first clinical trial will repurpose the drug Paxlovid, an antiviral that stops the initial severe symptoms of a coronavirus infection. A group of long COVID patients will take Paxlovid for 15 days, and scientists will study whether the drug helps alleviate their symptoms. The trial is slated to start in January 2023 — though results won’t be available until a year later, according to ClinicalTrials.gov. This timeline is common for clinical trials.

Contributing to novel science

While studies like RECOVER may be far off from identifying new treatments for long COVID, participants can use their individual results from different medical tests to inform their care.

Through the Mount Sinai registry, as well as studies at the Columbia University Medical Center and Weill Cornell, Friedman has had her brain scanned, had her senses of smell and taste examined, and gave a sample of her gut microbiome, among other evaluations. Some tests have been more helpful than others, she said. For example, it was “a big relief” when one type of brain scan did not show a marker for Alzheimer’s disease that has appeared in some autopsies of long COVID patients. But she always appreciates seeing new results.

“I feel very strongly that patients should be at the center of the information and data that they’re providing to research studies,” said Dr. Lawrence Purpura, an infectious disease specialist at CUMC who treats and studies long COVID. His team is working on resources that will help patients interpret findings from tests looking at how COVID-19 impacts T cells and other aspects of the immune system, performed in a new study at his clinic.

Patients at long COVID clinics also benefit from a more informal type of research. Andrew Gold, a patient in his 60s who goes to Mount Sinai’s clinic, observed that his doctors often discuss the trends from their practices alongside the findings from new studies.

“They’re very verbal about taking my symptoms, my condition, my status, and placing it into the bigger picture of what they’re learning,” he said.

Need for more coordination, financial support

Clinics can help patients find the spectrum of specialists they need, by providing referrals to doctors in the same health care system who are knowledgeable about long COVID.

But coordinating care between specialists is far from easy. Patients at academic clinics described serving as intermediaries between different doctors, conveying messages about test results or prescriptions. At one point in his care, Gold said, a set of new symptoms led him to receive a number of tests for conditions like Parkinson’s disease and amyotrophic lateral sclerosis, or ALS, that all turned up negative. With more communication between doctors, “I could have been spared a bunch of testing,” he said.

In some cases, Mount Sinai’s clinic will arrange what Chen calls a “clinical case conference” — where multiple specialists meet to talk about a single patient. These conferences are reserved for the most complex cases in which individual doctors have failed to find successful treatments, however, rather than the norm for all patients.

Managing different specialists can be particularly challenging for patients like Mandelbaum, who are suffering from cognitive symptoms as they talk to doctors. “My brain fog was so intense that I actually couldn’t keep track of anything,” she said. She left the Mount Sinai clinic in 2021 and sought out more holistic care through alternative medicine.

Mount Sinai is working to hire more staff to aid coordination between doctors, as well as social workers for directing people to social services, Chen said. Similar efforts are underway at CUMC. Purpura noted that while patients wait for appointments with specialists to open up, these patient navigators can also provide basic medical care, such as advice on pacing, an approach to balancing day-to-day activities with planned periods of rest. It’s a common symptom management strategy for long COVID.

Cost is another concern for many patients. Unlike the public clinics run by Health + Hospitals, private health care systems have insurance restrictions — and the bills can add up. Christine Leow, a patient based in Brooklyn who has gone to Mount Sinai’s clinic since fall 2020, pays for most of her care out-of-pocket because the institution doesn’t accept her insurance. Appointments with specialists often cost $200 to $300 each, she said.

“It really burned a hole in my savings,” she said. But Leow still considers herself lucky to be able to pay. “I know people who don’t have the luxury to visit a long COVID clinic because of the expenses and time,” she said.

This story is the second in a series on Long COVID treatment options in New York City. Read the first piece on public facilities run by the NYC Health + Hospitals.