February 4, 2022 – Long COVID it continues to be a moving target – it is constantly evolving and still surprising doctors and patients who sometimes have long-lasting disabling symptoms.
Little about the disorder seems predictable at this point. People may have COVID for a long time after asymptomatic, mild, or severe COVID-19, for example. And when a person gets long-term COVID – also known as long-term COVID – the symptoms can vary greatly.
To resolve any uncertainty, the New York State Department of Health brought together experts from primary care, pediatrics, physical medicine, rehabilitation, and pulmonology to answer some urgent questions.
New York was the first epicenter in 2020 pandemic in the United States, making it the center of a long COVID epidemic, says Emily Lutterloh, MD, director of the Department of Epidemiology at the New York State Department of Health.
What do you do when you first see a patient with long-term COVID?
The first review varies because there are so many different ways in which COVID-19 has been presented for a long time, says Benjamin Abramoff, MD, a specialist in physical medicine and rehabilitation at Penn Medicine in Philadelphia.
Assessing their past and current care also helps guide their ongoing management, says Zijian Chen, MD, medical director of the Center for Post-COVID Care in Mount Sinai Health System in New York City.
Can vaccination help people with long-term COVID?
Anything we can do to prevent people from becoming critically ill or being hospitalized with COVID-19 is helpful in preventing long-term COVID, says Abramoff, who is also director of the COVID Long-Term Disease Clinic at the University of Pennsylvania.
“So that’s something I always talk to patients about. In some research, sometimes patients feel better after vaccine,” he says.
What types of therapies do you find useful for your patients?
Rehabilitation is a key part of recovering from a long COVID, Abramoff says. “It’s very important to make this very patient-specific.”
“We have patients who work. In some cases, they already go to the gym, but they don’t feel like they have the same endurance,” he says. “And then we have patients who are so crippled by their own fatigue that I can’t get out of bed. “
An exercise program can help people who have been suffering from COVID for a long time.
“There is a big role for therapeutic 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 may mean that some people cannot reach a therapist trained for the needs of patients with long-term COVID symptoms. Educating physical and occupational therapists in the community is one solution.
How long does it take for people with long-term COVID to recover and return to 100% if they can?
Specific numbers are not actually available, Baratta says.
“But I can’t tell you that the general trend I see is that many patients have a gradual improvement in symptoms. Slow but steady improvement over time can be the body’s natural healing process, the result of medical interventions, or both.”
It can help reassure people with long-term COVID that they will not be discharged from care until they feel they have maximized their health, says Sharagim Kemp, DO, medical director of COVID’s Recovery Program for Nuvance Health, New York and Connecticut Health Systems .
It is important to set realistic expectations for recovery and that not everyone will return to 100% functioning before COVID, she says.
“When we are able to help them lower their expectations, there is an almost rapid recovery because they no longer put that pressure on themselves,” says Kemp.
What are the most common symptoms you see with long-term COVID?
It is useful to think of long COVID as a very broad umbrella concept, says Abramoff.
Repeating what many others have noticed, fatigue, cognitive dysfunction or “brain fog,” and shortness of breath or difficulty breathing are the most common symptoms, he says.
Some have reported vague symptoms, Kemp says.
People can go to the doctor “without even realizing they have COVID. That’s one of the important points here – to have a high index of suspicion for patients who come with more symptoms,” she says.
For this reason, patients may report symptoms that do not necessarily fit into any specialty, says Sarah J. Ryan, MD, an internal medicine physician at Irving Medical Center at Columbia University in New York City. People say they are “just not alone” or that they are tired after recovering from COVID-19.
Is there a link between severe cases of COVID and severe long-term COVID?
“It’s not like that at all. I’d say more than 80% of the patients we see had a mild to moderate illness and weren’t hospitalized,” Baratta says.
Long COVID is a little different in children and teenagers, says Ixsy Ramirez, MD, pediatrician pulmonologist. Most patients at the long COVID clinic at the University of Michigan were previously healthy, not children with asthma or other lung conditions as might be expected. In fact, many students are athletes, or were before they had COVID for a long time.
In this population, shortness of breath is the most common, and then chest pain and fatigue. Unfortunately, the symptoms are so severe for many children that their effect is limited, even if they can return to competitive play.
Are there defined criteria that you use to diagnose long-term COVID? How to diagnose someone?
It’s an issue that’s constantly evolving, Kemp says. The generally accepted definition focuses on persistent or new symptoms 4 weeks or more after the original COVID-19 disease, but there are exceptions.
Researchers are working on laboratory tests to confirm the diagnosis. But without a definitive blood biomarker, diagnosis requires “based detective work,” Ryan says.
Do you bring mental health providers to help you with your treatment?
“We’re actually pretty focused on mental health,” says the co-founder of the COVID Recovery Clinic at his facility. Mount Sinai offers, for example, individual and group mental health services.
“I have personally seen patients I did not expect to have such serious changes in mental health” with long-term COVID.
Stony Brook University Hospital in New York City has a long COVID clinic staffed by several primary care physicians who perform examinations and refer patients to services. The bonus of providing psychological services to all patients after COVID is that doctors get a more complete picture of each person and better understand what they are going through, says Abigail Chua, a pulmonologist at Stony Brook.
Some empathy is necessary, says Baratta. “It’s important to recognize that many of these patients have feelings of sadness or loss of a previous life.”
What does the future hold?
A simple test to diagnose long-term COVID, combined with an effective treatment that helps people feel better within a week, would be ideal, Abramoff says.
“That would be nice. But you know, we’re just not in that moment.”
And it would be helpful to start identifying subtypes of long-term COVID so that diagnosis and treatment can be more targeted, Abramoff says. Otherwise, “It will be a very challenging approach to try to treat all of our patients with long-term COVID symptoms in the same way.”
Good clinical trials are also needed to address all the subtleties of long-term COVID.
Numerous 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 discover the condition.
One goal, Chen says, would be the ability to treat long-term COVID, not just its symptoms.
Long COVID stresses the need to prevent people from getting COVID in the first place, Ramirez says. This will continue to be important, especially when some people reject the seriousness of COVID, comparing it to the common cold if they get it. This attitude is rejected by a large number of people who, unfortunately, develop long-lasting, often debilitating symptoms.