New Long COVID and complex disease center at Mount Sinai set to be a leader in research, clinical care

Last week, a new center serving people with Long COVID and related complex chronic diseases opened at Mount Sinai Health System in New York City. Led by Dr. David Putrino, the center will be a hub for diagnosing these diseases, helping patients manage their symptoms, and running clinical trials of novel treatments.

The Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) builds upon prior work by Putrino and his colleagues at Mount Sinai, as well as work by collaborators across research and patient communities. It serves people with Myalgic Encephalomyelitis (ME), hypermobility disorders, dysautonomia, Long Lyme or Chronic Lyme disease, and other complex chronic diseases along with Long COVID. Dr. Amy Proal, president and chief scientific officer of the PolyBio Research Foundation,* serves as the center’s scientific director.

Patients who seek care at CoRE will have access to state-of-the-art testing to diagnose different diseases and track their responses to potential treatments. They will also have opportunities to participate in clinical trials: current trials include studies of HIV antivirals Truvada and Maraviroc and a trial of the enzyme lumbrokinase, which may address microclots.

The center’s dual focus and commitment to rapid scientific development reflects the urgency needed to better understand these complex diseases, Putrino said during its opening event on October 10. 

“Every brick of this center has been built by patients and their feedback, the people who, very kindly, are giving up their energy and exerting themselves to work with us,” Putrino said.

While CoRE officially opened last week, some patients have had early appointments over the last few months. Those who spoke to The Sick Times expressed excitement about the high-level testing, symptom management options, and participation in trials. But they also shared some logistical hurdles as the center has grown, such as challenges with scheduling and unmet expectations around masking while CoRE shared space with a different clinic.

“There’s testing there that you wouldn’t get elsewhere, and it’s all in one spot,” said Ruth Brannan, a CoRE patient and person with Long COVID. She feels “very lucky” to have access to the center’s resources, though she acknowledged that it’s “early days” for a facility that is quickly evolving.

CoRE currently has capacity to onboard about 20 new patients a week, according to Putrino, and can serve several hundred each year.

*Editor’s note: The PolyBio Research Foundation, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.

Building on prior research and lived experiences

Putrino was not an expert in complex chronic diseases when the pandemic started. His expertise and position at Mount Sinai focuses on rapid innovation: speeding up the decade-plus that it typically takes for research to go from a lab bench to a patient’s bedside.

At the opening event, he described how this focus led him to recognize Long COVID in spring 2020. His team developed an app to help people with COVID-19 track their symptoms after they were sent home from the emergency room. But the researchers quickly realized that many of those people weren’t “recovering” from their acute illnesses.

Putrino and his colleagues started studying those cases, then began developing symptom management strategies for patients, building on prior work treating people recovering from concussions. The team soon began collaborating with people with Long COVID as well as other academic teams, including Akiko Iwasaki at Yale University and Proal at PolyBio. Together they learned more about other infection-associated chronic diseases.

CoRE’s current symptom management offerings — including autonomic rehabilitation, therapy for chronic pain, and non-invasive brain stimulation — build upon extensive research into complex chronic diseases and are constantly updated based on the latest findings. For patients, appointments at CoRE are different from other doctor’s visits in that they don’t feel a need to constantly bring new papers or treatment ideas, because the clinicians are already well-informed. “They’re at the forefront of research,” Brannan said.

“I’ve been especially impressed with how open they are to any kind of treatment that works,” said Joshua Roman, who has gone to CoRE starting with its earlier iteration as a rehabilitation program in 2021. For example, he had a good experience with a breathing program, which he was surprised to find in a Western hospital system, he said.

That breathing program, called Meo Health, has now been validated by a peer-reviewed study and is available to all CoRE patients. “It might not be a full cure, you might not be back on track like nothing has happened, but for some people it can be pretty impactful,” said Charlotte Bovin, founder and CEO of Meo Health, who herself has Long COVID.

The CoRE team is “extremely innovative, extremely forward-thinking, and open to experiment,” as well as very “patient-oriented,” Bovin said.

A new space designed for people with energy-limiting diseases

CoRE’s physical center includes two spaces in the basement of Mount Sinai’s Upper East Side hospital, on 98th Street next to Central Park. Both have been extensively renovated to meet the needs of people with Long COVID and similar complex diseases; one is now fully open while the other is slated to be complete later this fall.

The spaces are designed to be “psychologically safe,” said Mirelle Phillips, founder and CEO of Studio Elsewhere, a studio focused on bio-experiential design that led the renovations. Key physical features include: adaptive lights that can be turned up or down based on a patient’s preference, privacy barriers between testing areas, and color choices that feel less intimidating than the typical white one may expect in a hospital.

The rooms also feature upgraded HVAC systems and far-UVC lighting, which research suggests can kill SARS-CoV-2 and other viruses. Along with these upgrades, clinicians are expected to wear N95 masks whenever they are in direct contact with patients and KN95s or better when they are not, according to Putrino.

“We’re trying to make it so if you come to our clinic to get treated for Long COVID, you won’t get COVID,” Proal said during the opening event, to applause from attendees.

Despite the investment in this updated space, most CoRE appointments — including all initial intake appointments — so far have been remote, to accommodate patients’ limited energy and the challenges many face when traveling in New York City. Patients are most likely to come into the center for testing.

Not all patients will do all the tests; it depends on their symptoms and prior diagnoses, Putrino said. For example, patients generally start with an active stand test to identify potential Postural Orthostatic Tachycardia Syndrome (POTS), then may do a tilt-table test later; the latter can lead to worse symptoms for some people. One CoRE patient, Rose Friedman, reported that she was able to decline a tilt-table test this summer because she had a prior POTS diagnosis.

Following the tests, patients will receive customized reports, also designed by Studio Elsewhere, that visualize the biological underpinnings of their symptoms and show how their results compare to others with the same diagnoses. “It’s going to have a glossary and visuals of how everything’s connected,” Phillips said.

Patients will be able to repeat certain tests every few months to track how they are doing. In one preliminary example, some patients whose Metamax tests reported dysfunctional mitochondria in their first tests showed improvement following a regimen of supplements to boost mitochondrial function, Putrino said.

However, these tests are currently inaccessible to people who are more severe as they require patients to come into the center. Even for those able to travel, doing several tests in one hours-long appointment has downsides: “I was really exhausted after the testing… and I’m a relatively mild case,” said A., one patient who was tested in August.

*Editor’s note: Two CoRE patients who spoke to The Sick Times for this story requested to be referred to by initials only, for privacy reasons.

Growing pains for a new, complex center

While CoRE officially opened last week, the center has been ramping up with appointments over the last several months. Several patients who had appointments during this time shared that they’ve been excited to get tested and participate in research, but have faced some logistical hurdles as the center hires new staff and scales up. Some challenges have stemmed from CoRE sharing space with the Abilities Research Center, an adjacent center at the hospital that is not explicitly focused on infection-associated diseases.

Multiple patients who spoke to The Sick Times expressed some confusion about scheduling and insurance approvals. A., who lives in Brooklyn, planned her schedule around a testing appointment, only to find out that it “actually hadn’t been put in the calendar,” she said. For K., it took months to have a follow-up appointment after the intake testing due to staffing shortages while the center hired more people.

Sofia Adams, who also had an appointment over the summer for testing, was disappointed to find staff unmasked or wearing surgical masks when they arrived despite a prior confirmation that CoRE staff wear high-quality masks. Adams also hadn’t known in advance that one of the tests, the Metamax, would require them to take their mask off, they said. “I had a full-blown panic attack. I was like, I have to leave,” Adams recalled. In addition, a home visit for Adams to participate in a clinical trial was abruptly canceled because they didn’t pick up a last-minute phone call, they said.

“I’m really grateful that they’re doing this work and this research, [but] I think ultimately it can only be a net positive if they don’t infect patients or each other,” Adams said.

Ultimately it can only be a net positive if they don’t infect patients or each other.

Sofia Adams

In response, Putrino acknowledged that the early months of appointments have been far from perfect. “We opened out of brute force,” he said, noting that CoRE initially shared space with a different center that works with a different group of patients. “That led to some expectation violations, which I really regret… [We have] put together policies to make sure that we do better.”

Putrino emphasized that CoRE now has a specialized space with layered infection control measures. The team is also working to set up a separate waiting area for patients in the CoRE space, so that their time in Mount Sinai’s common areas is limited.

The clinic has other logistical hurdles to overcome as well, Putrino said. These include home visits for people with more severe symptoms — CoRE currently can do home visits for research studies but not clinical care due to insurance complications, he said — and negotiating with insurance providers so that they can see people who live outside of New York and New Jersey.

Better connectivity within Mount Sinai is another concern for Putrino. The health system currently has multiple Long COVID-related clinics, including a Center for Post-COVID Care and another newer center focused on serving patients in Harlem and the South Bronx. Many other clinicians at Mount Sinai also see people with Long COVID and related diseases. These different options, combined with the bureaucracies inherent in a large hospital network, have created a confusing landscape, as some prospective patients found last week when they tried to contact CoRE from Mount Sinai’s phone directory and were not connected.

Some patients who spoke to The Sick Times said they’ve seen improvements as CoRE has added more staff and moved into its own space. “It felt a little disorganized towards the beginning, but I think that they’re getting a lot more organized now,” Friedman said. “I’ve had a much easier time scheduling appointments.”

Providing a model for other centers

In addition to providing diagnostic information for patients, the advanced testing available at CoRE is a key component of multiple clinical trials now underway at the center. “Objective physiological changes can be tracked” in tandem with people’s self-reported changes in symptoms, Putrino said.

Proal also discussed this process in her remarks at the opening event. “We’re not just measuring people’s symptoms,” she said. “We collect samples, and we send them to our collaborators who work those samples up for so many infectious and immune and endocrine and hormonal and metabolic parameters.” These measurements will help the researchers better understand the underlying biology of the diseases under study and will inform clinical trials at other institutions.

Current clinical trials at CoRE include a trial of lumbrokinase, an enzyme that may break down microclots; a trial testing two HIV antivirals; a vagus nerve stimulation trial; and a trial of a device called Sana that can assist with chronic pain. Trials include people with different diagnoses: for example, the Sana trial focuses on Long Lyme, while the lumbrokinase trial includes Long COVID and ME groups.

Proal is particularly excited about a potential upcoming trial with the drug rapamycin, which research suggests may help boost the immune system and improve function in other areas of the body. She and colleagues at CoRE are currently working on the approval process to start the trial, she told The Sick Times.

CoRE patients who spoke to The Sick Times were enthusiastic about participating in trials. “I’ve given so much blood” over the course of different studies, Roman said. “And I’m totally fine with that. I think it’s important. There’s so much that has to be understood.” Like other people who’ve taken part in CoRE’s programs, Roman finds that the center gives him hope not only for Long COVID research, but also for a model of healthcare that is more integrated in addressing complex diseases, he said.

To that end, CoRE is developing educational materials for other healthcare providers, an effort led by Dr. Raven Baxter, who has lived experience of Long COVID as well as a PhD in curriculum development for science education. These materials are a crucial part of the training process for new staff at CoRE, Putrino said, but will also become publicly available for other institutions to use.

“If this becomes a location clinic for every Long COVID patient in the world, I would say that our mission has failed,” Putrino said at the conclusion of the opening event last week. “This, I hope, is the clinic that’s going to launch a thousand clinics.”

If this becomes a location clinic for every Long COVID patient in the world, I would say that our mission has failed.

David Putrino

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