A leader in Mount Sinai Health System's efforts to learn more about long COVID fears it could become a national epidemic.

Dr. David Putrino is in charge of rehabilitation innovation at Mount Sinai Health System, and that includes a groundbreaking $10 million clinic that focuses on diagnosing and researching treatments for long COVID.

“We’re not taking any steps to reduce the risks of a nationwide epidemic,” he said in an interview with NY1, saying he is alarmed by the latest data on people diagnosed with long COVID and the lack of awareness of what seems to be happening.

Long COVID is defined as having symptoms from COVID-19 at least three months after being diagnosed. For some people, the symptoms can last much longer, with far more serious consequences.

Symptoms for each person differ, in a list that is 200 long. The latest data from the Centers for Disease Control and Prevention shows that 5% of the population currently has long COVID. And for a quarter of them, it's debilitating.

"I’m really concerned about the overall effect this is going to have on national health when we’re not following the science," he said.

Because even though we are out of the pandemic, the risks of long COVID remain.

“Your risk of going on to develop long COVID increases slightly with each infection, even if you recover just fine from the last infection,” he said.

And he has seen this firsthand.

At the Cohen Center for Recovery from Complex Chronic Illness, Putrino and his team see a couple new patients every day that go through a series of tests to see if they have the illness.

And the numbers are only going up — and the waiting list growing longer. Right now, it's a six-month wait to get seen.

It's part of their $10 million clinic, as Mount Sinai has become one of the places people turn to from around the country to learn more about long COVID.

“A lot of patients try to see us from California," he said. "It’s very hard for us to see out-of-state patients.”

Many times, he said patients arrive after seeing other doctors.

“They go to the doctor, they test and they get told good news, everything tested normal, which is not good news for someone who is feeling as terrible as most people with long COVID feel," he said.

One of those people was Nicole Lopez-Jantzen, who used to run marathons, and now can barely walk her dog.

“I’m tired right now," she said on a walk with NY1 just across the street from her apartment in Queens. "My energy just goes down, down. And then I have to go lie down.”

Doctors couldn't figure out what was wrong until she was seen at Mount Sinai and diagnosed with long COVID in 2022.

From neurological to respiratory, her symptoms run the gamut.  

That is the purpose of the testing they perform at Mount Sinai. One is a tilt table that will measure a patient's blood pressure, sweat levels and heart rate in real time as the table moves. 

"Seventy percent of people with long COVID have something called autonomic dysfunction, meaning that we have a part of our nervous system, this is the part of your nervous system that controls all the things you don’t usually think about that’s under autonomous control," he said. "Your blood pressure, your heart rate, whether you’re feeling hot or cold, digesting your food, you don’t need to think about these functions, your body just does these functions for you."

The goal in the series of tests is to test patients as much as possible to identify what is wrong.

"Many of the things that we’re measuring with this technology are very dynamic so some days you can be perfectly fine and other days it can be really challenging to do anything related to your daily life and it’s tests like this that really push the limits of someone’s body’s abilities that allows us to identify objectively when something is going wrong so we can identify the problem," Putrino said.

There's another test called the Bod Pod that looks like a space capsule. It is a three-minute test to simply see how healthy patients’ blood vessels are while resting.

Someone with long COVID will feel overexerted just from sitting.

"What we saw in people with long COVID is they were burning 20, 30 percent more energy than someone that we would expect for their height, weight, gender and age," he said. "So even though we were asking them to sit very still and not use any energy at all, their bodies were working really, really hard to maintain that."

Diagnosing long COVID is one challenge. But getting people actually tested — and getting people educated about the illness — is another one.  

Putrino said Mount Sinai was conducting a study on long COVID where they were looking to compare impacts on people with long COVID to those who did not suffer long-term consequences from the virus.

However, Putrino said it was apparent very quickly that there was a problem when his team spoke with the 200 respondents.

He said about a quarter of them described symptoms that could be consistent with long COVID.

"So you know they’d say, 'Yeah, I fully recovered.' Then we’d ask questions about their cognition, and they would say, 'Oh, you know I do find it harder to do my job these days,'" Putrino said. "'You know I do feel my memory is a little different since I had COVID, but I don’t think I have long COVID. I just think my memory is a bit different.'"

He said all those people had to be removed from the study, but whether they got tested? Ultimately, he cannot know.

That falls in line with an ongoing long COVID survey being taken by the New York City Department of Health and Mental Hygiene.

In exclusive data obtained by NY1, preliminary results from the survey of about 9,000 New Yorkers shows that 31% of respondents who have long-lasting symptoms believe they have long COVID. However, only 6% have been officially diagnosed.

The city is still collecting the survey data, which was announced in January 2024.  

The early data raises questions about how much access there is for people who are potentially looking to get tested for long COVID, said Dr. Michelle Morse, the interim commissioner of health at the city DOH. 

"It means some of those folks may not have had access to health care or maybe didn't feel comfortable bringing up their symptoms with their provider," she said. "This highlights a huge challenge across the city and across the nation. Access to health care."

She said it could also mean that doctors are not diagnosing long COVID, which is something Nicole Lopez-Jantzen told NY1 was her experience and Putrino said he has heard from his patients at Mount Sinai.

The average age of Mount Sinai's long COVID patients is 38, which Putrino said shows the illness affects young people.

The city data also points to people with lower socioeconomic status — and people of color — also being at higher risk for developing long COVID.

That would match trends already established about who were more susceptible to catching the virus. Morse does not believe that is a coincidence.  

“One of the reasons we think that may be the case that more people of color and more people who are low wealth may have symptoms of long COVID is because they did have a higher burden of COVID during the pandemic," she said. "So knowing that that trend was also the case with more folks of color and more people of low income were affected by COVID and infected by COVID, then it stands to reason that perhaps more of them may have long COVID symptoms.”

The city survey is federally funded, but Morse said that money has not been pulled, despite reports of cuts throughout the federal government.

Putrino said Mount Sinai's clinic does not have any federal funding, but has heard about others around the country losing federal dollars. He said that's one of the reasons why it's so crucial they continue their work into finding treatments.

Right now, there are none for long COVID. Mount Sinai is currently conducting multiple trials.

One is a headset that has shown promising signs in animal testing to reduce brain inflammation, according to Putrino.

The headset provides magnetic therapy at a rate 100,000 times less than an MRI scan. A researcher demonstrating the device told NY1 that she couldn't feel anything happening even as the device was turned on.

Brain inflammation can cause indecisiveness and memory loss, both symptoms of long COVID.

Participants take part for 15 minutes two times a week for a month. They underwent cognitive testing before the trial, and will do so again after it's complete. Half of the participants are getting the treatment, and half are not.

Putrino said the study of several dozen participants will be complete over the summer.

The challenge is that this is for one set of symptoms. And many others remain, as the work to understand long COVID continues.