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Hospital systems in the New York metropolitan area were among the first in the nation to form multidisciplinary programs dedicated to treating long COVID. Two years later, those programs are no closer to defining the condition, or pinning down a cause, but doctors are doing their best to help patients get better.

Jeffrey Fine, MD, medical director of Rusk Rehabilitation at NYU Langone Hospital Brooklyn, said there's been a constant need to learn and adapt: "We're learning to fly the plane, while we're flying the plane," he said in an interview with MedPage Today.

One major difference from two years ago, Fine said, is that patients are coming to the center with more manageable symptoms, which could be a result of better access to vaccines and treatments to better manage the initial infection. On the other hand, patients and physicians are still having trouble determining the exact cause of patients' symptoms, he said.

"It's actually quite challenging, because at this point long COVID is almost a diagnosis of exclusion," said Cristina Martinez, APN, FNP-BC, of the COVID Recovery Center at Hackensack Meridian Health. "Because we've tested them for various issues, and a lot of times, if not most of the time, they're testing as normal."

The most common symptoms Martinez sees in her program are fatigue, brain fog, palpitations, shortness of breath, and chronic cough. The only thing that can be done is test for everything, Martinez said. And often, they come to a diagnosis simply "because there's nothing else left for it to possibly be."

According to Zijian Chen, MD, the medical director of the Center for Post COVID Care at Mount Sinai, the most difficult thing is not having a clear idea about what symptoms are causing patients' discomfort.

"It really does take a little bit of work to tease out what the patients are really feeling," he told MedPage Today. "Someone may come in and just say, 'I just don't feel like myself.' But that isn't a diagnosis. It's a symptom, but it's not even a precise symptom."

Chen said he tries to identify the primary symptom, whether it's pulmonary, vascular, or neurological, and refer the patient for more focused care.

At his center, which is currently treating about 300 patients, the most common symptoms are still cardiopulmonary, Chen said. Several patients are also presenting with complaints about cognition and "capacity for performance."

Fine has seen "the gamut of recovery" in his patients. Several patients have fully regained their lung function without oxygen or inhaled medications, even those who had more significant pulmonary damage from their infection. Other patients have managed to regain enough function to return to their normal lives with minimal limitations, he said, but there is a group of patients "whose pulmonary and vascular system were injured enough" that they still require supplemental oxygen.

Patients at Hackensack Meridian have also shown progress toward full recoveries, according to Martinez. In some cases, patients' symptoms will end so abruptly they won't even realize how long it had been since the last episode. But, Martinez noted, there is no secret approach or therapy that helps these patients recover.

"What's special about this particular area is that there is no treatment plan that I can say [with certainty] this works for this person," She said. "Everybody is extremely individualized."

If a patient presents with chronic fatigue, Martinez and her colleagues might try physical therapy only to find it makes the symptoms worse, so they are regularly testing different approaches with each patient to find the most effective treatment option.

This method of trial and error for treating long COVID patients can be taxing for providers, Chen said. But the most important thing providers can do with this patient population is believe them, he added.

Chen has noticed how hard the journey has been for his patients coming back from the acute COVID-19 infection and continuing to struggle with new symptoms.

"For them to just suffer through that and then go for help, and then have someone tell them, 'I don't know what's going on. All your tests are normal, you must not have anything,' I think that's like the worst message you can ever give a patient," he said.

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