Feb. 4, 2022 -- Long COVID continues to be a moving target -- continuously evolving and still surprising doctors and patients who have sometimes incapacitating long-term symptoms.
Little about the disorder seems predictable at this point. People can have long COVID after asymptomatic, mild, or severe COVID-19, for example. And when a person gets long COVID -- also known as long-haul COVID -- symptoms can vary widely.
To address all the uncertainty, the New York State Department of Health gathered experts in primary care, pediatrics, physical medicine, rehabilitation, and pulmonology to answer some pressing questions.
New York in 2020 was the first epicenter of the pandemic in the United States, making it also the center of the long COVID epidemic, says Emily Lutterloh, MD, director of the Division of Epidemiology at the New York State Department of Health.
What do you do when you're seeing a patient with long COVID for the first time?
The first exam varies because there are so many different ways long COVID presents itself, says Benjamin Abramoff, MD, a physical medicine and rehabilitation specialist at Penn Medicine in Philadelphia.
Assessing their previous and current care also helps to direct their ongoing management, says Zijian Chen, MD, medical director of the Center for Post-COVID Care at Mount Sinai Health System in New York City.
Can vaccination help people with long COVID?
Anything that we can do to help prevent people from being critically ill or being hospitalized with COVID-19 is helpful to prevent long COVID, says Abramoff, who is also director of the long COVID clinic at the University of Pennsylvania.
"So that's something I always discuss with patients. In some research, sometimes patients do feel better after the vaccine," he says.
What kind of therapies do you find helpful for your patients?
Rehabilitation is a key part of recovery from long COVID, Abramoff says. "It is very important to have make this very patient-specific."
"We have patients that are working. They're already going to the gym in some cases but don't feel like they have the same endurance," he says. "And then we have patients who are so crippled by their fatigue that they can't get out of bed."
An exercise program can help people who have long COVID.
"There's a big role for therapy services in the recovery of these patients," says John Baratta, MD, of the Department of Physical Medicine and Rehabilitation at the University of North Carolina.
But the limited number of long COVID clinics can mean some people are unable to get to therapists trained on the needs of patients with lingering COVID symptoms. Educating community physical and occupational therapists is one solution.
How long does it take for people with long COVID to recover, and get back to 100% if they can?
Specific numbers aren’t really available, Baratta says.
"But I can't tell you the general trend that I see is that a lot of patients have a gradual improvement of symptoms. The slow but steady improvement with time may be the body's natural healing process, a result of medical interventions, or both.”
It can help to reassure people with long COVID that they will not be discharged from care until they feel they've maximized their health, says Sharagim Kemp, DO, medical director of the COVID Recovery Program for Nuvance Health, a health system in New York and Connecticut.
It's essential to set realistic recovery expectations, and that not everyone will return to 100% of their pre-COVID functioning, she says.
"Once we are able to help them reset their expectations, there's almost an accelerated recovery because they are not putting that pressure on themselves anymore," Kemp says.
What are the most common symptoms you're seeing in long COVID?
It's helpful to think of long COVID as a very broad umbrella term, Abramoff says.
Echoing what many others have observed, fatigue, cognitive dysfunction or “brain fog,“ and shortness of breath or troubled breathing appear to be the most common symptoms, he says.
Some reported vague symptoms, Kemp says.
People may go to the doctor "not even realizing that they had COVID. That's one of the important points here -- to have a high index of suspicion for patients who come in with multiple symptoms," she says.
For this reason, patients can report symptoms that don't necessarily fit into any specialty, says Sarah J. Ryan, MD, an internal medicine doctor at Columbia University Irving Medical Center in New York City. People say they are “just not themselves” or they are tired after their COVID-19 recovery.
Is there a connection between severe COVID cases and severe long COVID?
"It's not like that at all. I would say that more than 80% of the patients that we see had mild to moderate illness and they were not hospitalized," Baratta says.
Long COVID is a bit different in children and teenagers, says Ixsy Ramirez, MD, a pediatric pulmonologist. Most patients in the long COVID clinic at the University of Michigan were previously healthy, and not children with asthma or other lung conditions as one might expect. In fact, many are student athletes, or were before they had long COVID.
In this population, shortness of breath is most common, followed by chest pain and fatigue. Unfortunately, the symptoms are so serious for many kids that their performance is limited, even if they can return to competitive play.
Are there defined criteria you use to diagnose long COVID? How do you give someone a diagnosis?
That's an ever-evolving question, Kemp says. The generally accepted definition centers on persistent or new symptoms 4 weeks or more after the original COVID-19 illness, but there are exceptions.
Researchers are working on lab tests to help confirm the diagnosis. But without a definitive blood biomarker, getting to the diagnosis requires "some thorough detective work," Ryan says.
Do you bring in mental health providers to help with treatment?
"We focus on mental health quite a bit actually," says, co-founder of his institution’s COVID recovery clinic. Mount Sinai offers one-on-one and group mental health services, for example.
"Personally, I've seen patients that I did not expect to have such severe mental health changes" with long COVID.
Stony Brook University Hospital in New York City has a long COVID clinic staffed by multiple primary care doctors who do exams and refer patients to services. A bonus of offering psychological services to all post-COVID patients is doctors get a more complete picture of each person and a better understanding of what they are going through, says Abigail Chua, a pulmonologist at Stony Brook.
Some empathy is essential, Baratta says. "It's important to recognize that a lot of these patients present with a sense of grief or loss for their prior life."
What does the future hold?
A simple test to diagnose long COVID, combined with an effective treatment that help people feel better within a week, would be ideal, Abramoff says.
"That would be lovely. But you know, we're just not at that point."
And it would be helpful to start identifying subtypes of long COVID so diagnosis and treatment can be more targeted, Abramoff says. Otherwise, "It's going to be a very challenging approach to try to treat all of our patients with long COVID symptoms the same way."
Good clinical trials likewise are needed to address all the subtleties of long COVID.
A number of long COVID centers are collaborating on research to find out more, Chen says. Actions include setting up a bank of tissue samples from people with long COVID so researchers can continue to figure out the condition.
One goal, Chen says, would be the ability to treat long COVID rather than just its symptoms.
Long COVID emphasizes the need to prevent people from getting COVID in the first place, Ramirez says. This will continue to be important, particularly when some people dismiss the seriousness of COVID, comparing it to a cold if they get it. That attitude discounts the large number of people who unfortunately go on to develop long-term, often debilitating, symptoms.