The Challenge of Treating Long COVID and What We Know So Far

Credit: Adobe Stock/JeromeCronenberger

Long COVID continues to impact millions of people worldwide, leaving many with lingering and often debilitating symptoms long after their initial infection. Despite growing research, the condition remains complex, affecting everything from the heart and lungs to the nervous system.

In an interview with The Educated Patient, Noah Greenspan, PT, DPT, a board-certified clinical specialist in cardiovascular and pulmonary physical therapy with over 30 years of experience and founder of the Pulmonary Wellness & Rehabilitation Center, and Alex, a patient with long COVID, discuss the realities of the misunderstood condition.

Can you give us an overview of what long COVID is and why some people continue to experience symptoms months or even years after infection?

Noah Greenspan, PT, DPT: According to the Centers for Disease Control and Prevention (CDC), the definition of long COVID is “a chronic condition that occurs after SARS-CoV-2 infection and is present for at least three months. Long COVID includes a wide range of symptoms or conditions that may improve, worsen, or be ongoing.”

I realize that definition probably seems very vague. In my experience, this is extremely appropriate because rarely do we see such a diverse group of symptoms as we have with COVID-19, often with very little rhyme or reason as to who develops what and why.

COVID is super variable. When I say this, I don’t just mean from person to person, but also within the same individual from day to day, hour to hour, even minute to minute. I have had patients send me videos in which their heart rate, blood pressure and oxygen saturation can fluctuate wildly over the course of a couple of minutes with no change in activity level or other explanation.

There are still many, many unknowns. What we do know is slowly increasing over time, but I think we still have a very long way to go. This continues to be challenging based upon lack of funding.

Are there any symptoms of long COVID that seem to be the most common or hardest to treat?

NG: Initially, we were seeing mostly older patients with preexisting medical conditions, many of whom had spent a prolonged period of time in the intensive care unit (ICU) and/or on ventilators. As time went on, we started to see many younger, seemingly healthier patients, whose symptoms were more difficult to explain.

As a cardiopulmonary physical therapist, many of the patients that we saw presented with complaints of shortness of breath, chest pain, profound exhaustion and severely limited activity tolerance. Often, these symptoms were present even in the absence of any formal cardiac or pulmonary diagnosis. In other words, patients would develop severe shortness of breath or chest pain, but all of their diagnostic tests would come back normal.

Many presented with neurologic symptoms such as autonomic dysfunction or dysautonomia, which is dysfunction of the autonomic nervous system and includes such diagnoses as postural orthostatic tachycardia syndrome (POTS), in which a person’s heart rate spikes when going from lying down to sitting up or sitting up to standing, or postural or orthostatic hypotension, in which blood pressure can drop suddenly upon standing.

Another hallmark of COVID that we saw frequently was the presence of post-exertional symptom exacerbation (PESE) or post-exertional malaise (PEM). In many cases, people would be fine during an activity, only to experience a crash or worsening of symptoms hours to days later that were often long-lasting.

With this in mind, balancing activity with rest is crucial. This includes physical activity as well as emotional and cognitive stressors.

How has our understanding of long COVID evolved since the early days of the pandemic? Are there any promising new treatments or research findings?

NG: This is a very hard question to answer. I think we have a better understanding of the fact that this is a postviral condition and all that that entails. This is good because this has emerged as an area for ongoing research, and while there are some treatments that have been helpful for some, I still have not seen any that have been effective across the board or even in a large majority of people. In our practice, the things that we have found to be effective include the use of compression garments (stockings/hose), fluids and electrolytes, balancing exercise and activity with rest, and more restorative treatments like controlled breathing techniques and meditation, and high-concentration oxygen treatments, which we have used successfully in the past with conditions like chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, pulmonary hypertension and heart failure.

What are some of the biggest challenges in diagnosing and treating long COVID, especially when symptoms vary so widely?

NG: Money, access to care and access to coordinated care by medical professionals that are very experienced in treating COVID. As a new (now 5 years old) and novel virus, much of what we know had to be learned from scratch through trial and error. Also, while it was pretty much all-hands-on-deck during the height of the pandemic, once the initial surge ended, many medical professionals went back to their everyday practice.

What’s your perspective on the future of long COVID care?

NG: This is a hard question to answer — especially in today’s volatile political climate. I think funding will always be a challenge, and since the severity of long COVID cases seems to be less than it was at the beginning, I worry that many people will not give it the attention that it deserves.

Do you think we’re making enough progress in recognizing and treating it? Nope.

COVID is still here, and the only real way to ensure that you do not get long COVID is to not get COVID in the first place. I encourage people to continue to wear a mask in crowded or close conditions, continue to vaccinate and take precautions.

Just because you have had COVID before and have not gotten long COVID doesn’t mean that this will always be the case. There is some belief that the effects can be cumulative and, therefore, the more times you get sick, the greater the chances that your symptoms could persist.

A Patient’s Perspective:

Can you walk us through your experience with long COVID — when did you first start noticing symptoms, and how have they affected your daily life?

Alex: It took me a while to realize that many of my symptoms were from long COVID — the main reason being that my COVID infection really damaged my heart and I needed heart surgery. So, I had initially attributed my symptoms to the heart surgery recovery. However, as the months went by, I recognized that my symptoms were more in line with long COVID. My daily life has been profoundly affected, as I have been on disability since 2021. My employer was no longer able to hold my position. Besides all the physical symptoms, there is a large mental and social component which I struggle with every day.

What has been the most difficult part of dealing with long COVID — physically, emotionally or socially?

Alex: All three have been very difficult, but I think the physical is the worst for me because it feeds into all the rest. For example, it is very common for me to have frequent “COVID flare-ups,” which will exacerbate many if not all the components of COVID symptoms and sometimes create an additional, unexplained new symptom. Last year Dr. Noah pointed out that I had severe neck swelling that went away after a few weeks but really impacted me socially, mentally and emotionally. Over the past 4 years, every time I start to feel better, I have a flare-up. It is very demoralizing. I was always a very positive, outgoing successful individual, but now I struggle to leave the house for anything other than therapy or doctor’s appointments.

Have you found anything that has helped improve your symptoms or made managing your condition easier?

Alex: My time at Pulmonary Wellness has helped a lot because I am able to do some activity while being on oxygen, and I feel safe doing so because they are constantly monitoring my heart, blood pressure and oxygen levels. Being active does help me to feel better, but Dr. Noah has helped to realize that the activity might also result in a flare-up after some time, so he has helped me determine and manage that to avoid flares.

What do you wish more people — whether doctors, family members or the general public — understood about living with long COVID?

Alex: Much of the world has put COVID behind them, but some of us are still dealing with it. Many of the doctors and medical staff that came into the field during the beginning of the pandemic have returned to their respective fields or practices. Also, many of the symptoms that occur do not appear on tests, leading to distrust among health care providers, family and friends who can’t understand why a person can’t get better or why their team can’t treat them.