Why psychological explanations for long COVID are dangerous [PODCAST]

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“Patients with myalgic encephalomyelitis (ME) and their allies will rally in DC, London, and Edinburgh this September to “demand bold, urgent governmental action” for the millions of people living with ME, long COVID, and other infection-associated, chronic diseases.

As researchers continue to find many similarities between ME and long COVID, the history of ME offers crucial lessons for approaching long COVID and some pathways toward more effective research and care.”

V. Jo Hsu is an assistant professor of rhetoric and writing.

They share their story and discuss their KevinMD article, “Why psychological explanations for long COVID are dangerous.”

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Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show we have Jo Hsu. They are an assistant professor of rhetoric and writing at the University of Texas at Austin, and they wrote the KevinMD article “Why psychological explanations for long COVID are dangerous.” Jo, welcome to the show.

V. Jo Hsu: Thank you for having me.

Kevin Pho: So we’ll get into your article a little bit, but first off, briefly share your story and journey to where you are today.

V. Jo Hsu: Sure. So as you mentioned, I’m an assistant professor of rhetoric at the University of Texas at Austin. I’m also appointed in Asian American studies and LGBTQ studies, and I also do disability studies. I’ve been chronically ill for most of my adult life, and my research looks at how language and communication affect race, gender, health, and disability, and how those things come together to shape people’s life chances and opportunities.

Kevin Pho: So you mentioned that you have had a chronic illness for a lot of your life. Tell us about some of the interactions that you’ve had with the health care system.

V. Jo Hsu: Sure. So I have ME, myalgic encephalomyelitis, also known as ME/CFS, which is now being spoken about more in the context of long COVID. Because it has been poorly researched and poorly understood for so long, and because a lot of physicians don’t have training in it, a lot of my interactions with the health care system were frustrating, I’m sure for my clinicians as well. Nobody knew what was happening. I kept getting passed on to the next specialist. My labs would come back abnormal, but not in a way that was expected or made sense for anybody, and it just felt like I was shuffling through a system where none of my experiences were legible, so I just kept being passed around.

Kevin Pho: In terms of being passed around, take us into one of those conversations. What were some of the things that health care clinicians would say to you in the past?

V. Jo Hsu: Sure. On maybe the worst end of things, it was simply that if my results did not come up reading like anything legible as a recognizable disease to this particular physician, it would just be that I don’t have anything, I should calm down and go away. I had one clinician ask me if I knew what a peer-reviewed study was, and I had to inform them that I in fact write those for a living.

And on the other end, the better exchanges I had, before I found an ME expert who could diagnose me and actually address what I was feeling, the better interactions I had were with physicians who just tried to troubleshoot with me: “I’m not sure what’s going on, but what is it that you’re feeling? What is it that concerns you? What can we do about these things with what we know?”

Kevin Pho: So in terms of those more positive interactions, when you say that that clinician would troubleshoot with you, what kind of questions would that clinician typically ask you?

V. Jo Hsu: Yeah, so I remember one question that really stuck with me, where he asked, “What is it that you’re most worried about?” Because especially with multisystem conditions, it feels like everything’s going wrong with your body at once. I’m overwhelmed by it; I don’t know what to do first. And as an academic, I’m most worried about my cognition. I was most terrified that I wouldn’t be able to think.

And so that helped me name that that was the thing at the top of my mind, and it also gave me something to keep track of, right? If that’s the thing I’m most concerned about, I can trace how my cognition is working from day to day, and what I did before and after in order to affect it in what way. It gave me a focal point when I was otherwise feeling like I was spinning around in space.

Kevin Pho: So for those who aren’t familiar, ME/CFS is myalgic encephalomyelitis/chronic fatigue syndrome. You did mention that you did see an ME specialist eventually. How many clinicians did it take you before you found this one person?

V. Jo Hsu: Oh, too many, I’m pretty sure. So at least three PCPs, four GI specialists, three endocrinologists, two neurologists, and one cardiologist. And eventually I had to travel out, actually, to Florida, to the Institute for Neuro-Immune Medicine, because there are just a few centers around the country that specialize in it.

Kevin Pho: All right, and you’re going to tell us more about your story and your KevinMD article that you wrote, “Why psychological explanations for long COVID are dangerous.” Now, for those who get a chance to read your article, just walk my audience through it and share the story of why you decided to write it.

V. Jo Hsu: Sure. So for a lot of the history of ME/CFS, it became devised as a psychosomatic condition, with a real emphasis on the “psycho,” right? That this is being caused by, quote unquote, illness beliefs, and the solution to that, if that’s our assumption, is that you should learn to stop thinking the illness beliefs, right? So that you can think your way out of illness.

And it’s true that lots of physical symptoms can create psychological symptoms. It’s true that your mind has a truly noticeable effect on your body. But people who have ME are viscerally aware that it is not a thing that’s being triggered by our thoughts. It is our body creating a sensation that we are experiencing, and for that to be dismissed by clinicians over and over again is very frustrating and discouraging.

Kevin Pho: And so just paint us a picture. Let’s say a typical day: paint us a picture of a typical day and some of the things that you would feel, just so we can get an idea of what we’re talking about.

V. Jo Hsu: Oh, yeah, absolutely. So when everything started getting worse for me, I would wake up every day feeling like vertigo, but without the room spinning. It would feel like my head was floaty, and it would feel like my thoughts would stutter. As an academic, it was really noticeable. When I sat down to work, I would just blank, or I would lose track of where my sentences were or what words were coming out of my mouth.

And it was really noticeable after any exertion. I used to be an athlete; I used to compete in weightlifting and in jiu-jitsu. And if I got my heart rate up at all, I just wouldn’t be able to move for hours afterwards, and I would be very ill the next day. That was the first symptom that I really traced the pattern in and tried to describe to my physicians, and all of them said that wasn’t a thing, right? And now we’re calling it post-exertional malaise. It’s being talked about, but for a long time I kept describing it, and they were telling me, “No, that doesn’t happen. You should just keep exercising.”

Kevin Pho: Some people are talking about a connection between ME/CFS and potential long COVID. So tell us more about that intersection.

V. Jo Hsu: Yeah, so studies are finding a good deal of overlap. Not that everyone with long COVID has ME/CFS, but I think one of the estimations was about 30, 43 percent. And it makes sense, given that a lot of cases of ME/CFS are found after a viral infection, and they’re still looking into the many possible causes of that. But it’s really concerning in that the numbers of long COVID are on a scale that’s unprecedented, and ME is known for keeping up to 75 percent of patients out of work and leaving 25 percent housebound. And that’s devastating both on an individual level but also on a social level, in terms of our workforce, our families, etc.

What would be most helpful is for folks working on long COVID to start with the information that they have from ME/CFS, right? Like, we’ve noticed post-exertional malaise in particular as a defining trait of ME, so using that to track cases of long COVID would help identify how many of these cases match what we know of ME/CFS. Particularly in ME patient communities, that is usually one of the most concerning symptoms. In the world that we live in, for any sort of exertion, mental, physical, emotional, to cause you to spiral out of control is truly debilitating, just in terms of moving about your everyday life and keeping a job, let alone having relationships that are meaningful.

Kevin Pho: So for those people who’ve had COVID and are having some of these symptoms that their clinician maybe says are nonspecific, how worried should they be, and when should they ask, “Hey, is this something more than long COVID symptoms?”

V. Jo Hsu: Yeah, I want to walk people back from the extreme worry, because I spent many years sitting in that, and I think there’s a decent amount of hope right now, in that we are talking more about this and there are studies that are getting off the ground.

But in terms of identifying whether this is generic post-illness tiredness versus ME, post-exertional malaise really is something else entirely. I’d never felt anything like it before I started experiencing it. It’s not just that I exercise and I’m tired or sore the next day; it’s that my heart rate went up and I can’t move. I had periods where I couldn’t speak. I just felt so entirely paralyzed by whatever sort of energy system in my body was failing. And it also comes with sensory overload, so any sound, any noise, any light feels painful.

And it’s the cognition, again, for me that’s really terrifying. I was watching a movie with my partner, and I just couldn’t follow anything. As somebody who writes for a living, it was really startling to me that I couldn’t keep track of the characters, and I couldn’t keep track of the plot. And so really disproportionate bodily, cognitive, and emotional reactions to what’s going on are a really strong signal that there’s something going on, and also that you probably should not keep pushing, because that’s the thing that’s triggering these reactions.

Kevin Pho: Now, you’ve had a lot of unfortunate interactions with the health care system. So for those patients out there who may be sharing similar stories like the one that you described, tell us what kind of questions they should be asking when they’re searching for that right clinician to take care of them.

V. Jo Hsu: I think one thing to look for is somebody who’s willing to be curious. I can’t overstate the value of that. I had to go to Florida for my diagnosis and for my initial care, but I’m not traveling to Florida every single time that I need care. So here, the providers who help me aren’t necessarily ME specialists, but they’re people who were willing to listen when I brought in studies, when I brought in resources from these different centers around the country and said, “OK, so here are the markers that they check for. Here’s what they prescribe based on the different symptoms. Can we walk through these possibilities?”

And if there’s somebody who’s willing to talk you through that, then it’s tremendously helpful, right? They bring their medical training and knowledge to what you are voicing and experiencing, and as long as they’re willing to recognize that and to respond to it, I don’t know, for me that gave me a lot of hope.

Kevin Pho: So when you go to Florida, to these ME specialists, tell us about some of the treatment options that you go through.

V. Jo Hsu: One thing that was really notable was that they knew what to look for in my labs. The sort of generic CBC wasn’t really showing anything in particular, but they checked for antibodies to Epstein-Barr, CMV, and a bunch of other things. They checked for killer cell counts. And so they knew to run tests that other physicians did not, and then those started lighting up the grid in terms of, “Oh, OK, here’s something going on with your body.” And that was really just a relieving affirmation of what was happening.

Another important thing, and this isn’t even a big clinical drug or whatever, is that they were the first people to tell me, “Yes, you’re right. When you exert yourself, you are making things worse, and what you need to do is to pull back.” And as an academic, that’s really hard, as it is for most people in the world right now. But for someone to tell me that, instead of insisting that I keep doing the thing that I felt was harmful, was also really helpful in telling me what was hurting me and what paths I had forward.

And then from there, we’re looking at stuff that might reduce neuroinflammation, stuff that might, for me, my cortisol levels are completely unresponsive and dead low, so stuff like that, vitamin D levels. There’s unfortunately no cure-all for ME/CFS that we know of, but there are things that we can treat. For orthostatic intolerance, hydration, compression stockings, and stuff like that are helpful, as long as we can identify what’s happening, even if we can’t completely remove the cause altogether.

Kevin Pho: Contrast how you feel today compared to, say, a few years ago, before this diagnosis was established or before this was properly treated.

V. Jo Hsu: Yeah, I’m up and down, like a lot of folks with chronic illness, but today I am far more functional than I was, say, a year ago. There was a period when I pretty much wasn’t leaving my house, because I had to just do my work from home. That was all I had the energy for, and then I just had to lie down and let the rest of the world pass by.

And now I’m much better at keeping track of my energy levels and noticing when I exert myself. I’ve played around with different treatments and found some things that worked, and I’m not 100 percent, but I am far more functional. I’m able to enjoy things again, which is the real relief for me. Even if we don’t have a cure, it’s not hopeless.

Kevin Pho: We’re talking to Jo Hsu. They are an assistant professor of rhetoric and writing at the University of Texas at Austin, and they wrote the KevinMD article “Why psychological explanations for long COVID are dangerous.” Jo, I’m a primary care physician myself; I do internal medicine. If a patient in my exam room shares a similar story to what you shared, what kind of advice do you have for me in terms of not dismissing the patient? What kind of questions should I be asking that patient if someone comes in with these previously unexplained symptoms?

V. Jo Hsu: Yeah, I would be asking them what their primary symptoms are, because, right, as a multisystem condition, it has all sorts of different manifestations. And there are resources out there. I know the Bateman Horne Center put out a document of, here are testing routes and treatment avenues based on what the patient is experiencing. So there are different things you might address depending on what the patient’s primary concerns are, right? If it’s orthostatic intolerance, then there are things we already do for that.

And so asking them what their major concerns are and going down that list with your knowledge, and also being willing to seek out resources and see what the experts in the field are currently trying, researching, etc., is all probably way more than that patient has gotten in the history of their condition.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

V. Jo Hsu: I think my big one, and hopefully something that the pandemic experience is making more apparent, is that medicine doesn’t operate in a vacuum, right? It affects, and it’s deeply affected, or often restricted and constrained, by the political and cultural environments that we’re in. So if you have a condition where for years researchers and clinicians are saying, “This is in the patient’s head,” or “This is not something we’re going to look further into,” then we don’t, and we don’t have curiosity about it, and we’re completely unprepared when we have a pandemic in 30 more years.

But if we say, “This doesn’t match my understanding. We don’t understand enough, but here are some things that we might look into,” then we have an entirely different message. And that matters, especially given the weight that we give medicine and people with authority in it. So, thinking more carefully about the way that we engage things we don’t yet understand, so that we can move forward toward a world with more comprehensive knowledge.

Kevin Pho: Jo, thank you so much for sharing your story, time, and insight. Thanks again for being on the show.

V. Jo Hsu: Yeah, thank you for having me. I really appreciate it.

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