How Do We Treat Long COVID?

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Millions of Americans are experiencing chronic, lingering, and debilitating symptoms months after recovering from COVID-19. The symptoms of so-called long COVID range from breathing problems to memory impairment, making it difficult for clinicians to pinpoint the syndrome and who may be at highest risk.

The NIH has directed $1 billion toward studying the syndrome, and some hospitals, including pediatric hospitals, have opened centers to research and care for patients experiencing long COVID.

On this week’s episode, Jonathan Whiteson, MD, medical director of cardiac and pulmonary rehab at NYU Langone Medical Center in New York City, and spokesperson for the American Academy of Physical Medicine and Rehabilitation, joins us to explain how long COVID is being detected and treated, and the new guidance for physicians.

The following is an abridged transcript of his interview with “Track the Vax” host, Serena Marshall:

Marshall: So, I want to just dive right into if you have long COVID, what are some of the symptoms that you’re seeing through your research?

Whiteson: So, long COVID means different things to different people who have had acute COVID. Typically we see people with persistent symptoms 4 to 6 weeks after their acute illness. And some of the most common symptoms include breathing difficulties, thinking difficulties, which we have termed “brain fog” — that includes difficulties with focus and concentration and memory. Some people experience joint pains and aches, chest pains, and cough. So there’s a multitude of different symptoms that some people have many and others have just a few.

Marshall: I mean, is there any that you saw that you were just really surprised by?

Whiteson: I think it’s the, in some individuals, the multitude of symptoms. Some have reported up to 50 different symptoms as varied as bowel and bladder dysfunction, nasal congestion, and sinus pressures. Really, we have to understand that COVID can affect every single organ system, so from toes to nose and everything in between, we have seen people with a multitude of different symptoms, and they all vary, some to a greater or lesser extent, but they can persist. And so I think that’s the greatest surprise. So many different organ systems, so many varied combinations of symptoms.

Marshall: And you do work with the American Academy of Physical Medicine and Rehabilitation, and they just released this series of statements and practice guidance for clinicians. Can you tell me a little bit about what those say?

Whiteson: So, as a physiatrist, I’m a rehabilitation physician, we call ourselves physiatrists.

Marshall: I haven’t heard that. I like that term.

Whiteson: We are members of the American Academy of Physical Medicine and Rehabilitation, and we formed really the only multidisciplinary, multispecialty collaborative to form consensus guidance statements on the management of long COVID. And we’ve been working together now for just about a year, developing guidance statements for practitioners, physicians out there, that could be general practitioners, family practitioners, rehab doctors, other specialists who are taking care of individuals with long COVID, so that we could gather the evidence to date — and that evidence is growing — and put it into ordered statements and guidance for individuals managing those symptoms.

So, to date, we’ve published on fatigue, and the latest two statements we released were on breathing disorders and cognitive disorders. And in the not-too-distant future, we’ll be publishing on autonomic issues. That’s a part of the nervous system that controls heart rate and breathing patterns, as well as cardiovascular symptoms. And then also going on to talk specifically about neurologic issues and also pediatric cases of long COVID.

So, it’s a very important process that we’re going through, and physiatrists really are uniquely qualified to help guide the multidisciplinary effort needed to develop guidance. We see patients from a quality-of-life perspective, from a holistic perspective, from the perspective of a function. We are involved in research. We are used to leading teams in collaboration with other physicians, but also allied health professionals, including physical and occupational therapists and psychologists. And we helped solve the problem of what is going on with long COVID. How do we develop a treatment plan? How do we implement that for the patients?

Marshall: It really seems like you’re creating a new specialty here.

Whiteson: So, interestingly, physiatry or the field of physical medicine rehabilitation has been around since post-Second World War, when Howard Rusk initiated this field. It’s developed in many ways.

Marshall: I meant for treating long COVID.

Whiteson: Certainly in COVID. Well, long COVID is a new condition. It’s a new problem that we’re dealing with. We’ve known about it for 18 to 20 months now, but there’s a need because individuals have a multitude of physical and functional limitations from the cognitive perspective, from cardiovascular and respiratory breathing perspectives.

So, again, as physiatrists, we’re used to dealing with this multidisciplinary, multipronged approach to manage patients with this condition. But we have to meet the need. We know that there is, through estimates or using data from Johns Hopkins, the American Academy of Physical Medicine and Rehabilitation have put out a tracker tracking the number of cases, the number of individuals that may have long COVID, and we’re getting close to 15 million individuals that have long COVID. This is a public health issue.

Marshall: I was so surprised by that number. I know we had heard estimates of 30 to 40% of those who test positive do become long haulers, but, like, seeing that number for almost 15 million, that was shocking.

Whiteson: It is shocking. It’s tremendously impactful. There aren’t enough physiatrists in the country to manage 15 million people who need assistance, which is why we’re coming together with family practitioners, pulmonologists, cardiologists, neurologists, psychiatrists, to put together these guidance statements.

We need to spread the word. We need to get information out there to clinicians and physicians in the general arena, in family practice, to help manage these conditions. There are people, individuals who’ve had COVID who now have long COVID, who are desperate for care, and it’s essential. And these individuals, many of them are young, they were working, they were active, they were participating in sports and other social activities. And now they’re tremendously limited.

So, when we say this is a public health issue and a public health emergency, it’s really true. It’s impacting many, many individuals, taking them away from their productive lives. And as a collaborative, writing these consensus guidance statements really has helped get people on the right direction, back on track, and help return people to a quality of life and function.

Marshall: I mean, Dr. Whiteson, just to put that 15 million number in perspective, can you give us a comparison with heart disease or something?

Whiteson: Well, COVID has become the number one cause of death in the United States. We have now 800,000 people who have died from COVID. So, that is starting to eclipse other causes of death, of which the most common have been cardiovascular disease, chronic respiratory disorders, pulmonary disease, and cancer.

So, this is coming right up there in terms of that sort of public health emergency, taking people away from productive lives, and not allowing them to contribute to the economy in terms of working. And then also in terms of long-term disability and death. So, this is right up there at this time with cardiovascular disease, pulmonary disease, and malignancies as a leading cause of disability and death.

Marshall: It’s just really something when you see it so starkly written there. So, when you talk about these guidances for different positions, someone who’s not in the field, more general practitioners listening along with us today, what are some of those guidances that you can give them?

Whiteson: So, I’m going to stay general, but I will refer the practitioner who’s listening and interested to look at the articles that have been published and they go into great detail. But the most important thing, of course, when we always evaluate a patient is to do a thorough history and physical examination. Of course, we want to understand what pre-existing conditions were because that does impact how sick people are when they have COVID. And the severity of COVID, probably, does give an indication to the severity of post-acute sequelae of COVID or long-haul COVID syndrome.

We found that with regards to lung disease, if people were hospitalized, if they had low oxygen levels on a pulse oximeter, if they were on a ventilator, the likelihood of them having persistent respiratory difficulties once they’ve recovered from the acute illness is going to be high.

So, a good history and physical is essential. And then, you know, doing some basic testing depending on what symptoms are most pressing, in the respect of the current guidance statements that we’ve put out in terms of, for instance, lung disease, breathing difficulties, checking somebody’s oxygen saturation with a pulse oximeter, checking basic labs, including CBC, a basic metabolic, these are some of the basic tests that should be done.

If someone has persistent symptoms of breathing disorder or it’s progressing, considering pulmonary function testing, a chest x-ray, progressing onto a CT scan if needed, the guidance statements really are there to help the general practitioner understand how to go through a stepwise evaluation of a patient with breathing difficulty, cognitive difficulty, fatigue, cardiovascular symptoms, but also understanding and recognizing when it’s time to collaborate with a specialist. We know there aren’t enough cardiologists or psychiatrists or psychologists or pulmonologists to see every patient. So, really, the weight of management does fall in the hands of the general practitioner, the family practitioner, and knowing when the thresholds are to call in a specialist to co-manage a patient.

Marshall: Given brain fog is a symptom, some people might wonder if some of this is psychosomatic, like PTSD from their experience with COVID.

Whiteson: So, that’s a very interesting point. And, of course, there is no doubt that whether you have been infected by COVID or affected, because it’s caused a change in our lifestyle, we have all been emotionally impacted by this COVID pandemic, whether it’s ourselves, loved ones, our communities. So, there’s no doubt that the human condition, we have a degree of anxiety and distress that’s around the COVID pandemic. For those people who have had COVID, they’ve had at times a brush with severe illness, a loss of function perhaps, even death. If they’ve survived, they have feared for their lives. So, there’s no doubt that there’s a degree of anxiety. Some people have depression, PTSD, and this has to be addressed.

I think the caution is that we must make sure that clinicians who are evaluating patients with COVID don’t immediately jump to the conclusion that the symptoms that individuals are presenting with are related to emotional disorders, and that has been a common occurrence. And part of the reason is many times when we are addressing individuals with symptoms, when we do some of the testing, we don’t find abnormalities on standardized testing. It doesn’t mean to say there isn’t a disorder going on. It doesn’t mean to say that these people, these individuals who have long COVID syndrome, don’t have pathology. We just haven’t been able to detect it as of yet.

We must be very cautious not to attribute it to mental health disorder; however, co-existent anxiety, stress, depression, PTSD, even sleep disorder needs to be evaluated for and managed. And it’s only natural to think that along with the physical, along with the functional, along with the medical issues, there will be emotional issues too.

Marshall: It’s interesting, you said a lot of the testing doesn’t show up, the symptoms don’t register in traditional testing yet. And so we’ve heard stories of people, you know, getting requests denied by their insurance company. So, how do you handle identifying this new disorder in an environment that’s not set up with a safety-net system, that’s not set up to really help such a high number of individuals go through an identification process?

Whiteson: This is a big problem. And you’re absolutely right. And insurance companies, health systems, even going up to sort of the federal government in terms of, you know, how do we design a system that can take care of individuals? The American Academy of Physical Medicine and Rehabilitation has been working with governmental agencies. The Centers for Disease Control has been talking to governmental committees regarding the needs of individuals with disabilities and disability relating to COVID.

So, as an organization, and physiatrists in general, we advocate for our patients both on a local level, in our health systems, on an insurance-based level with insurance companies, we call their medical directors, we’re appealing to them to recognize what’s going on with our patients, but the work also needs to be done, the advocacy has to be done at a governmental level. This will take a government intervention, even acts of Congress, to change and to recognize long COVID as a disability and to provide the appropriate services.

And for individuals who are looking for short-term disability, long-term disability, because they have been impacted by COVID — again, this is a new environment and, you know, as physiatrists, as the organization APM and all, we’re working with insurance companies for them to know and realize exactly what’s happening in the trenches with these patients. So, we advocate, we have to, it’s a work in progress, and we haven’t achieved everything yet, but we’ve made great inroads.

Marshall: One of the things we’ve heard is the best preventative measure of not having long COVID is not getting COVID and therefore getting a vaccine. Are you seeing that evidence correlation among your patients as well? Or are you seeing patients who’ve had vaccines have lower symptoms with long COVID?

Whiteson: Yeah, so individuals who’ve not been vaccinated are more likely to have severe disease and are more likely to have long COVID, more symptoms, and a greater impact on their function, quality of life, and overall health. We have seen breakthrough cases, individuals who’ve been vaccinated who have got COVID and have long COVID, but those symptoms tend to be milder and resolve in a quicker way.

We’re still gathering information. We’re still learning. We do not have all the answers yet. The trends appear to be, if you are vaccinated and you get breakthrough COVID, the likelihood of long-haul symptoms are less, the severity is less, and the duration is less.

Marshall: Why isn’t long COVID, do you think, talked about more? I feel like we hear so much about obviously the macabre, the 800,000 that have died, very important to prevent those deaths. But in order to change the conversation and get those who are still resistant to vaccines on board, you know, this is perhaps more of a realistic sickness to grasp onto.

Whiteson: Yeah. So, I think that’s another important point. We do listen to statements from the government and medical representatives saying, you know, get vaccinated and you’re much less likely to have severe disease, you’re much less likely to die. I think those are very important facts. But the majority of people who have COVID are going to survive, and many of them, as we’ve already seen, 30 to 40% as you mentioned, 15 million people on estimate so far are going to have long COVID symptoms.

And that’s very distressing. When you have long COVID symptoms, when you have brain fog, when you cannot think, when you cannot focus, when you cannot calculate, when you get lost, when you step off a train and you don’t know which way to turn, when you cannot breathe, when you’re having chest pain, when you get dizzy when you stand up, these are very impactful symptoms.

Listen, none of us want to die. We all want to be alive. But living with long COVID is very challenging. I think for, you know, our listeners, in terms of practitioners and anyone who listens who’s an individual who’s had COVID, overall our perspective is that individuals with long COVID do improve. Some improved quickly, weeks to months, many we’re seeing people who were infected probably January, February of 2020, so we’re now coming up to nearly 2 years and they’re still symptomatic. There are fluctuations and variations in their symptoms, days and weeks where they feel better, days and weeks where they feel worse, exacerbations if they over-exert themselves, both physically and mentally, but the general trend has been a positive one.

Whilst there are still some who have persistent symptoms, many do improve and many do recover. However, your point is well taken. We need to spread the word. We need to use this as a tool to encourage people to be vaccinated, to minimize their risk of infection, severe infection, and long COVID.

Marshall: You said many do recover. Do you see this, in 5, 10 years, being an illness that has to be managed like diabetes or something that you will recover from and move on from more acute?

Whiteson: So, I wish I had the crystal ball to answer that question. We have a sense when we look back at other viral illnesses, other epidemics, not on the scale of this, but there have been other viral infections that have caused significant side effects and multi-system involvement. When we look at that, we do see there’s a percentage that will have long-term symptoms, I personally recall several that I take care of who have had long-term symptoms, and this is five, one patient even 10 years later, following a severe respiratory infection, so there can be long-term consequences.

And let’s not forget there are some individuals who have COVID who are so sick, I have a number of patients who’ve had lung transplants. These people never live their previous lifestyle again. Their life is forever changed. So, yes, while many people with long COVID will recover and will recover completely, and we certainly hope in time they’ll put it behind them and they’ll forget altogether they had this, in a good way. There are going to be many that live with long-term consequences, long-term disability, because COVID impacted their organ systems so severely.

Marshall: What about kids?

Whiteson: So, let me just say that I take care of adults and not children. However, the American Academy of Physical Medicine and Rehabilitation has a strong pediatric representation. There will be a pediatric consensus statement released in the not-too-distant future. So, I’m not so qualified to talk about kids, but we do know kids get COVID. We do know kids get long COVID. The same principles of vaccination are really important, boosting the children as well. And having those children see physiatrists who specialize in pediatric disabilities is very, very important.

And, again, the collaborative really does emphasize that coordination of care with physiatrists, with pediatricians, to make sure that everyone understands how to evaluate the children, how to manage them, how to monitor them going forward, and to steer them in the right direction.

Marshall: It really is such a fascinating conversation. Dr. Whiteson, thank you so much for joining us.

Whiteson: Thank you, indeed.