OHSU’s Long COVID-19 Clinic director on how people are recovering and living with the condition

Oregon Health & Science University began its Long COVID-19 Clinic in 2021, a year into the pandemic as the first vaccines were just becoming widely available.

We talked with doctors in the clinic in 2022, and we wanted to check back in to see what clinicians have learned after treating thousands of long COVID patients. Aluko Hope is a professor in the Department of Medicine, a pulmonologist, critical care doctor and the medical director of what is now called the Critical and Acute Illness Recovery and Engagement Program (CAIRE) Jen Arnold is a lead nurse with the program.

They both join us to talk about what they’ve learned about caring for patients with long COVID in the last four years and what they hope to learn more about from the research that’s currently underway.

Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.

Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. Oregon Health & Science University began a program specifically for people with long COVID back in 2021. That was a year into the pandemic, when the first vaccines were just becoming widely available. And people all across the world were dealing with a wide variety of often serious symptoms that lingered months after their initial infections. We talked with doctors at the clinic in 2022.

We wanted to check back in now to see what they’ve learned after treating thousands of long COVID patients. Aluko Hope is a pulmonologist and critical care doctor, and the medical director of what’s now called CAIRE – that’s short for Critical and Acute Illness Recovery Engagement. It includes people with long COVID and other chronic conditions. Jen Arnold is the lead nurse with the program. They both join us now. It’s great to have both of you on Think Out Loud.

Aluko Hope: Thanks for having me.

Jen Arnold: Thanks for having us.

Miller: Aluko Hope, first – I want to start with the basics. At what point do you say that someone has long COVID as opposed to just COVID or something else?

Hope: Great question. I think the definition epidemiologically right now says that anybody who has gotten a COVID infection and has chronic symptoms that are lasting more than three months probably would qualify for the umbrella of long COVID.

Miller: More than three months?

Hope: Exactly.

Miller: Do you have a sense for how likely it is that somebody who gets COVID or got COVID, which is nearly all of us at this point, will develop long COVID?

Hope: The data from the CDC that we have from before October would suggest that around 9% of Oregonians, after they get a COVID, would have had chronic symptoms that would qualify them for long COVID.

Miller: So about 1 in 10?

Hope: Exactly. Now, a lot of those people will get better. About half of those people end up improving enough that, when we call them, they say that the symptoms are better enough that they no longer qualify. In terms of our program, the people that we’re seeing are probably the people who not only have had the long COVID but are having such symptom impairment that they need the help to understand what’s going on and to really improve their symptoms.

Miller: That’s a helpful way to think about it. So, the 1 in 10, say, that is maybe a larger group even than the number who would seek out care. Some people may have, say, brain fog for four months, but then it goes away and they, for whatever reason, think it’s not quite serious enough for them to go to a clinic like yours.

Hope: That’s what we think. For example, someone might have a chronic cough for months. They might see their primary care physician, manage it and get better enough that they no longer need care. They might have exercise intolerance for a few months, make some changes and also not need chronic care from our program.

So that’s the hope. Unfortunately, we also see the reverse of that, which is people who’ve been struggling for months, years, and didn’t think to come in. And you’re just like, oh my gosh, why didn’t you?

Miller: You’ve been suffering and there are things we could do. And we’ll talk about what you can do.

Jen Arnold, we just heard a couple … I just mentioned brain fog. Dr. Hope mentioned malaise or fatigue after maybe even activities that you wouldn’t think would cause excessive fatigue. What’s the variety of symptoms that you run into?

Arnold: There’s such a variety. I think that’s what makes this really difficult. The three big ones that we notice are um post-exertional malaise, chronic fatigue and the brain fog. And what I really like to explain, Dave, is that it’s really out of proportion to what you may think. Some people are familiar with a split level home where you’re going up five or six stairs. There’s a landing and you may have to go up five or six more. In a long COVID patient, they may climb those first five or six steps and be on that landing for 30 minutes because their brain has really interpreted it as perhaps running a marathon. It’s just out of proportion to the activity they may have done, and that’s hard. It’s hard to wrap your head around.

Miller: What you just described, that alone seems like it could be a truly debilitating symptom, being so tired you have to stop for 30 minutes after going up five steps. I don’t know how you live anything close to what you might have thought in the past as your normal life, if that’s one of your symptoms.

Arnold: Yeah, exactly. It’s hard to also get people to understand that because it’s not typical. People don’t really think about those things. I think driving is another example. If you wanna talk about the brain fog, when you’re driving, you’re constantly assessing the situation. You’re looking at traffic lights and pedestrians, and I don’t think you even realize how much you’re doing. So a long COVID patient may find that incredibly taxing and afterwards just be exhausted.

The brain is, and the body is, a pretty amazing system. The synergy that it is together is what’s hard. I think that’s why our program is so helpful. We’re really providing this holistic view of what’s happening there. I think that Dr. Hope can explain that perhaps better than I can, but it is a really challenging thing to wrap your head around.

Miller: So Dr. Hope, before we get to the holistic piece, I’m just curious … For this potentially gigantic symptom alone, what hope do you offer people? What can you do to treat that kind of malaise?

Hope: That’s the thing. There is good treatment. First and foremost, the treatment does change depending on where you are from the beginning of the illness. In that first phase, really it’s about, as Jen is talking about, educating the patient, making sure they understand what’s really happened. Your energy system at the level of the brain, has really moved from a house that’s a big house, a mansion, into a doll house. So you’re living with a lot less energy at the level of what the brain is thinking than you had before.

Miller: So is your advice to patients at that point, don’t try to do even close to what you used to do because you are physically or cognitively incapable of doing it. Just shut down big parts of your life to give yourself time to rest?

Hope: For that first phase, that’s probably the big thing for people to understand is to not push through.

Miller: I mean, if you have kids, if you have a job, if you’re taking care of somebody, what you’ve just described, what you’d recommend, it may be shut down your life in a way that seems impossible.

Hope: Well, I think it’s not quite a shutdown. It is living within your energy means. It’s a recalibrating and looking at your accounts a little bit differently. And deciding, OK, I’m noticing, for example, that after 30 minutes of standing upright, I’m getting worse headaches. So that might mean that your limit is about 30 minutes of being upright.

Now, before your illness, 30 minutes of being upright would be ridiculously little. But just that understanding allows you to then pace your activities differently. No, we’re not gonna pretend that it’s not hard. It is extremely difficult, particularly for some people with certain roles and responsibilities, particularly young mothers. If you’ve got young children, it’s impossible to really do this well.

But at least teaching people and having people understand that this is a brain disease. This is not because you don’t have the willpower. This is not because you’re doing something wrong. This is just what’s happened to the energy system at the level of the brain. That’s the first phase.

Miller: So how does it change? And it’s probably worth saying again that I imagine this is very individual. I mean, is there a huge variety of the way long COVID presents?

Hope: If you’ve seen one long COVID patient, you’ve seen one long COVID patient. Part of it is because oftentimes the autonomic nervous system – that part of the nervous system that’s supposed to be doing everything automatically without you thinking about it regulating your heart rate, regulating your digestion – is often very much involved and dysregulated in a lot of patients.

So there’s a lot of symptoms that can emerge just from having a deregulated autonomic nervous system. Your heart’s beating way too fast. It’s taking so much longer to get back to a normal heart rate after doing a simple activity. Digestion becomes really difficult. You get bloating, you get nausea and vomiting, those kinds of things. So I think that’s one aspect of it. Really understanding how the brain regulates itself can really help people.

We do use a lot of a mixture of both behavioral and medicines. But medicines, we think of in this illness, are more like sprinkles on top of the ice cream. It’s really not the means by which you get better. It’s really a combination of both the medicines with a good understanding of the illness, a good understanding of what drives your body to do things. [That’s] really important.

Miller: Broadly though, to stick with the metaphor of the sprinkles or the ice cream, is all of it about managing symptoms and giving your body a chance to get better, as opposed to some kind of medicine that actually gets at the root of what’s happening or some kind of intervention that, itself, solves the problem?

Hope: That’s a great question. There is a subset. As we get further out, we do start to focus on enhancing patients’ capacity. To do that, often we’re using neuroplasticity principles.

Miller: What does that mean?

Hope: That’s just using the way the brain can change to help the brain make changes. But that’s a slow process. And most people think they’re in that phase in the beginning and they’re usually not. That is a phase of how we can help people get back to who they were. But that’s a phase that takes a long time. So you’re right, a chunk of the recovery process is managing symptoms, managing impairments.

That first phase is about harm reduction though. It’s about stopping the harm of the constant inflammation of the post-exertional symptoms, living within your means very strictly so that we can better understand the factors that are driving your illness, and then managing the impairments to the illness. Then, yeah, for some people, getting to that point where we can focus on enhancing capacity. But that often takes longer to get to that phase than people think and it’s often not the first phase of the recovery, it’s more the latter phase.

Miller: Jen, when you first started at this clinic in 2021, after doing a lot of other kinds of nursing over the course of your career, did you imagine you’d be doing this four years later?

Arnold: In one word, no. I absolutely think this has changed the trajectory of my career. But I don’t think any of us really knew where we’d be. And I have to say, Dave, this has been an incredible learning opportunity for me. I want to thank all of our patients and the providers. It’s a kind of an honor and a privilege to be on this journey with them.

They put a lot of trust in us, and we’re working with an incredible team of researchers and physical therapists. I think what really goes into a multidisciplinary or an interdisciplinary clinic like this is so incomprehensible to people unless you’ve been through it. So I did not think I’d be here. And I thought I’d be done by the end of summer of 2021.

Miller: Am I right that you could have been done at some point, but you’re still in this role because you’ve chosen to stay with it?

Arnold: Partially, yes, I have chosen to stay with this clinic ...

Miller: You can’t see Dr. Hope, but he just crossed both of his fingers saying, I think with his fingers, “Don’t leave us.” But I’m wondering why you’ve chosen to stay with this program?

Arnold: I’ll tell you that’s a pretty simple answer. I feel completely awed at the people I’ve been lucky enough to work with, and Dr. Hope is certainly one of them. I think they are incredibly smart. And to be able to see what’s happening behind the scenes, while I know it’s frustrating for our patients, to just be able to work in the presence of people who have such a tremendous amount of knowledge has been awe inspiring for me. And I’m looking forward to where we’re going, developing this clinic.

What we have learned, what the pandemic has taught us, and certainly what we even knew before, is that a lot of our post-ICU survivors have so many similar symptoms, like the psychology and the physical symptoms behind being in an ICU that long. Their recovery is very much the same as post viral illness. And having this opportunity and this vision to move forward is exciting for our patients, for us and for OHSU as an institution.

Miller: Dr. Hope, early on I remember hearing – and when I say early on I mean certainly by 2021, if not the end of 2020 – there was either a belief among some folks, or a hope, that the sheer number of people who, at that point, had already been diagnosed with long COVID, that just that number would lead to a societal shift in the way a lot of people thought about chronic conditions, things like chronic fatigue syndrome, post-Lyme disease. To put it bluntly, I think that the hope among people who had long suffered and often felt like they weren’t believed was, “Finally we will be believed because there are hundreds of thousands of other people or millions of people around the world who have this new chronic syndrome. There are so many that we have to be believed.”

But that was a long time ago now. Do you think that that’s come to pass? Has long COVID changed both medicine or society’s understanding of chronic syndromes?

Hope: I would say yes and no. At the research level, at the level of the excitement for research in these conditions, I would say it’s completely changed. The NIH is funding several recovery initiatives, for example, that focus on trying treatments just for long COVID. And that’s gonna have an impact on some of these other infection-associated chronic conditions. So at the research level there is an understanding, even in terms of implementation of how to assess these patients and what counts as quality care. I think there is really an interest in implementing really important quality initiatives for patients with these chronic conditions.

On the ground, in terms of patients seeing their primary care providers, these conditions are just challenging because this is often more than the sum of their parts. So sometimes, and unfortunately for example, some of the people at high risk for these conditions, including women, there may just be some challenges in terms of believing patients. And clinicians just don’t have the skills to validate patients when they don’t understand the condition.

Miller: And are more likely to think someone’s being lazy, malingering or just complaining?

Hope: Exactly. And often, for example, the post-exertion of malaise is a very easy to understand construct if you know how to ask for it. But if you think of it as simply fatigue you might be very easily inclined to say, “well, just push through it,” which in fact is really the wrong thing to do.

Miller: Well, if I came to you and I said some things that made you think this could be post-exertion malaise, what should a good clinician ask? And what might someone who’s less experienced not know to ask?

Hope: So as Jen was talking about, it’s really about the symptoms getting worse after a physical, cognitive, emotional or sometimes even sensory exertion. And the exertion of a completely normal level of exertion. It’s not what you would think of as a kind of exertion. It’s not a marathon. It’s walking 10 [steps] and all of a sudden you’re needing an hour to recover.

But the other thing is cognitive sensory. Sometimes people go out to dinner. They usually go to dinner all the time and now, after hanging out with their friends for an hour, they need a whole weekend to recover from that. Well, that’s not normal. That’s out of proportion to what you would expect.

Miller: And it’s not based on the physical act of climbing the stairs. It is maybe the emotional connection or some kind of interpersonal exertion of energy?

Hope: Ultimately, what we talk about is that the brain’s energy ceiling really has shifted and, as a result of that, the brain trips into different uses of energy systems because of that lowered ceiling. So you just have more symptoms as a result of that.

Miller: You mentioned women being more likely to get COVID. What else do we know about demographics? So that’s gender, but [also] age, medical history, vaccination status, previous infections. Is there any good data about the relative likelihood of developing long COVID?

Hope: Yeah, I think there’s some good data. We know that, for example, women are more likely than men. We know that middle aged people tend to be at higher risk than, say, older adults for long COVID, for example. Some members of the LGBTQ community, for example, may be at higher risk. Hispanic adults may be at higher risk as well. We’re not sure why. Some chronic conditions, like migraine disorders, COPD, diabetes, may put people at higher risk of transitioning into long COVID. Why that is, is unclear to us as well.

And then I would say the literature doesn’t quite necessarily meet that yet. But we see in our clinic, for example, a lot of patients with neurodivergence, brains that are wired a little differently, seem to be at higher risk in terms of presenting to clinics like ours. People with prior histories of motor vehicle accidents or previous childhood abuse, those kinds of things seem to be at higher risk. That might have more to do with the way the brain has shifted from those experiences. So there’s a lot of need for research in this area.

Miller: What are the big questions about long COVID that you are most interested in getting answers for?

Hope: The biology, I think, is probably the most relevant. If we understand, for example, post-exertional malaise seems to be a really important construct. If we could understand the biology of that, I think it would go a long way. What are the hormones driving that particular signal? Where is it coming from in the brain? I think those are all really important things that could really help the science advance. But I don’t think recovery is going to be driven just by biological understanding either.

Miller: What do you mean by that?

Hope: The brain is incredibly adaptive. There are lots of things that we don’t understand about our bodies and we still know how to make changes. In the rehab world, we’ve been recovering from strokes for years and years and years. We don’t always have to go in and change the clock that caused the stroke in order for the brain to be able to adapt and make those changes. Just recognizing that although the biology will help us along, it’s not the only pathway to really help our patients.

Miller: And we should be thinking more about long-term rehab as a piece of helping people get better, helping people lead lives closest to what they want?

Hope: Exactly. Recovery is more than just the rehabilitation. It’s also about social function. It’s also about understanding your body as it is now, and being able to advocate for what you need. That’s something that people have struggles with as well. Mindfulness, being a curious observer, so that you’re not compounding the illness along with worry and anxiety about the things that you can’t necessarily control in this current moment. These are all skills that I think we can teach people and can help make a huge difference.

Miller: Is there any hope – maybe this is the American in me – that there could be some great pharma breakthrough that will make long COVID a thing of the past, or is it too much to hope for, some magic bullet, magic pill?

Hope: I think that there probably will be an advancement scientifically. Absolutely. That is absolutely something to hope for. I think the reality of advancements is that it’s gonna be complex. Look at the Wegovy [a prescription weight loss medication] experience. It’s gonna be helpful for a lot of people and we’re gonna have to make decisions. But when we have that advancement, it’s probably gonna be most useful for the people at the severe end of the spectrum.

Miller: And who knows what’s gonna happen with all these people on these new drugs in the coming years?

Hope: Yes, so the learnings that we have from today are still gonna be relevant to a whole swath of the population. But absolutely, the hope is that some of that drug revolution will come and that the severe people will have options, because that’s the hardest set of people to treat. If you’ve been severely impaired and really debilitated for years, it’s hard to make that brain change right now. We just don’t have options.

Miller: Jen, before we have to say goodbye, I’m just curious what it’s been like to be doing this work now, to be taking care of many people who survived COVID but whose lives have been dramatically impacted, still, by the virus? To be doing this work when, as a society we have, to such a great extent, acted as if COVID is just behind us, a bad dream that we got past from 2020 to 2022?

Arnold: Sure, I think that what you just said highlighted it. For us, in this field, in this arena and even these post-ICU patients who we will treat, this isn’t going away. It’s shifted, but I think that it’s still really relevant in the work we do. And we’re gonna continue to keep doing it and look for those changes. It may take a long time, as Dr. Hope alluded to, but we’re committed to it and we’re gonna keep going.

Miller: Jen Arnold and Aluko Hope, thanks very much.

Hope: Thank you.

Arnold: Thank you.

Miller: Jen Arnold is the lead nurse at the program at OHSU that focuses on care for patients with long COVID. Aluko Hope is a pulmonologist and critical care doctor, and the medical director of the program.

Before we go, we’re going to hear the stories of some of our listeners. We asked, on this fifth anniversary of Oregon’s COVID lockdown, what’s been on your mind and how COVID has changed your life? These are just some of the responses.

Bill [voicemail]: My name is Bill George and I live in Wilsonville, Oregon. My wife died from COVID but indirectly. COVID struck just as she was getting ready to go through procedures with her gastroenterologist over diverticulitis and ulcerative colitis. For the next two years, we couldn’t get any medical attention for her, because it was considered an elective process. So by the time we emerged from COVID and could get back into the hospital, she had to have an ileostomy. And in the process of getting that ileostomy, she caught sepsis and ultimately she died from sepsis. So, I attribute her last two years and all the pain that she went through to COVID because of the lack of medical attention that she could not receive during that period.

Danny [voicemail]: My name is Danny. I am from Battleground, Washington. My story was when COVID-19 hit, I remember very clearly that it was Friday the 13th when the kids were told they wouldn’t be going back to school. And at that moment, a few weeks later, I was furloughed. And a few months after that, I started my own farm, raising chickens. My wife and I raised, butchered and processed 1,000 birds every other week for the farmers’ market in Vancouver. It completely changed our life, obviously. But at the time, if everyone remembers, we all weren’t sure if we, any of us, were going to make it. So being home and with the family was really important.

Julie [voicemail]: Hi, my name is Julie Sparling, and I am a public school teacher who teaches creative movement in the Vancouver public schools. During the pandemic, we had to find a way to teach dance to hundreds of children through Zoom. And we started using Google slides, making short videos of ourselves and using a lot of creative ways to get feedback from students. Now, I’m doing that. I use a Google slide for all my lesson plans. It’s a great way to catalog my curriculum and to bring it back the following year. And it’s also easier to share. So, I don’t think I would have gone into that realm if it hadn’t been for COVID.

Tyler [voicemail]: Hi, my name is Tyler from Happy Valley. My wife and I, at the time, lived in Southwest Portland and only a few blocks away from the Justice Center. At the time, it was pretty incredible to be a part of the city because of all of the protests and the movements. We felt really a part of the city and our hearts are often called back to that time where there was a lot of unity. We felt the community draw closer together. There was sidewalk chalk everywhere that said, “Six feet apart but closer together.” And there was this sense of everyone looking out for one another. And we realized the depth and the gravity of that time, and what people had to go through and the hardships that were faced. But we also reminisce about that moment, that unification and that sense of community that we had never felt or experienced in the city before.

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