It is estimated nearly 30-percent of Covid-19 survivors continue to suffer from symptoms following their bout with the illness. Researcher and neuropsychologist James Jackson, Psy.D., is the author of the new book Clearing the Fog: From Surviving to Thriving with Long-COVID, A Practical Guide. The author of more than 90 scientific publications, Dr. Jackson has led research and treated patients affected by the cognitive impact of long COVID.
Christina Brown Fisher, a traumatic brain injury survivor, and Dr. Jackson discuss how the symptoms associated with long COVID often mirror those associated with mild traumatic brain injury (mTBI). Jackson offers practical tips about how to get help. He is a Research Associate Professor, and the lead psychologist for the Critical Illness Brain Dysfunction and Survivorship Center at the Vanderbilt University School of Medicine.
For more information about clinical trials involving long COVID, go to www.clintrials.gov.
This podcast episode includes scientific research findings, and is not intended to diagnose or provide personal or individual medical advice. If you have an existing health condition, always consult your healthcare practitioner.
Christina Brown Fisher, a traumatic brain injury survivor, and Dr. Jackson discuss how the symptoms associated with long COVID often mirror those associated with mild traumatic brain injury (mTBI). Jackson offers practical tips about how to get help. He is a Research Associate Professor, and the lead psychologist for the Critical Illness Brain Dysfunction and Survivorship Center at the Vanderbilt University School of Medicine.
For more information about clinical trials involving long COVID, go to www.clintrials.gov.
This podcast episode includes scientific research findings, and is not intended to diagnose or provide personal or individual medical advice. If you have an existing health condition, always consult your healthcare practitioner.
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What is Me, Myself & TBI: Facing Traumatic Brain Injury Head On ?
Me, Myself & TBI: Facing Traumatic Brain Injury Head On provides information and inspiration for people affected by brain injury. Each episode, journalist and TBI survivor Christina Brown Fisher speaks with people affected by brain injury. Listen to dive deep into their stories and lessons learned.
Christina Brown Fisher:
Hi, welcome to Me, Myself and TBI. I’m your host, Christina Brown Fisher. I am a journalist and writer, and I’m a traumatic brain injury survivor. After suffering a TBI, along with a host of other injuries following a motor vehicle wreck, I spent a little more than a year in neurorehabilitation at a Department of Veterans Affairs medical center, in Virginia. I’m also an Air Force veteran.
I healed alongside men and women who like me suffered their brain injury due to accident, but in many more cases they were there because of war, their service in Iraq or Afghanistan.
A few years later, when the world was in the throes of the pandemic, and I had returned to New York, believing I was healed from TBI, I began wrestling with some all too familiar symptoms --- dizziness, fatigue, forgetfulness --- increased heart rate, and what I could only describe at the time as “brain fog.” So, I sought help again, but this time --- the other patients --- they were people who had been diagnosed with Long COVID.
New data from the Centers for Disease Control indicate, “nearly one in five adults who have had COVID-19, now have Long COVID.” I spoke with researcher and neuropsychologist Dr. James Jackson from Vanderbilt University. He has led research and treated patients affected by the cognitive impact of Long COVID. He is the author of the new book “Clearing the Fog: From Surviving to Thriving with Long-COVID, A Practical Guide.”
Consider this book a handbook for how to navigate a complex medical system that often leaves people diagnosed with Long COVID feeling further isolated and sometimes ignored. He also talks about his own diagnosis with obsessive compulsive disorder, and offers tips on how to advocate for yourself, plus, where to look, to find answers to the many questions that come with chronic illness. He spoke with me from his office in Nashville, Tennessee.
Thank you so much, Dr. Jackson, for joining me today. I'm really looking forward to this conversation.
James Jackson, Psy.D.:
I'm a big fan of your work and of you, and I'm really happy to be here with you today. So thank you.
Christina Brown Fisher:
It is the time of year where we start hearing a lot more conversations about flu and more conversations about COVID --- COVID coming back. Let's talk about what Long COVID is and how it is distinguished from what most of us know about COVID.
James Jackson, Psy.D.:
Long COVID and COVID are a little bit distinct. Obviously, they're related. But when we think of COVID, we think of an acute phenomenon, really, you know, people develop COVID, they test positive for COVID, and typically for most people, thankfully, the symptoms associated with COVID, they last a day or two or these days they last for a week perhaps. But for a subset of people, probably tens of millions of people around the world, after those acute symptoms clear up, there are still symptoms that persist. And that's what we call Long COVID. And that Long COVID is marked by sometimes relatively permanent difficulties in cognitive functioning, in mental health functioning, in physical functioning. The acute symptoms are often gone, but lingering symptoms persist and it's really vexing, it's challenging. It's often disabling. It's what we call Long COVID.
Christina Brown Fisher:
And in your book, you talk about the volume of symptoms, that there's somewhere upwards of 200 symptoms that are associated with Long COVID.
James Jackson, Psy.D.:
There are hundreds of symptoms that people endorse as a function of having Long COVID. Now, some of those are relatively rare, right? Some of them are not so common, but dozens of them are. The unholy trinity of symptoms, as I like to call them, are in the physical functioning domain. Those include fatigue primarily. In the cognitive functioning domain and then in the mental health domain. Those are the three primary areas. I think, strangely, the majority of people with Long COVID symptoms. I say strangely, because I wouldn't have expected it, I don't think we expected it. The majority of people with Long COVID symptoms are people who were never very sick. They were never in the hospital much less in the ICU. Clearly, if you're critically ill with COVID, you're on a ventilator, your organs are failing, etc. you often have residual problems. Often, they're quite permanent. They're really problematic. That hasn't been surprising. We've been surprised, though, to see how many people had virtually no symptoms at all, right? But they were not hugely ill. And three months later, six months later, nine months later, a year later, they're having problems with attention. They're having problems with processing speed. They're so fatigued they can't get off the couch. They used to run marathons. Now they stumble their way through the local 5K, right? These are fairly common phenomena and often they occur on the heels of really mild symptoms. That's an important thing to know because I think there's this notion that you can't really be limited, disabled, hindered by Long COVID if your COVID wasn't so severe. That's just not the case, just not true.
Christina Brown Fisher:
I think that's one of the most surprising things that I came away with after reading your book that you don't necessarily have to have a very serious or significant case of COVID to then later be diagnosed with Long COVID. And then on top of that, the other thing I found surprising was this delay, could be three months or, as you just mentioned, a year later. How then do you or a family member recognize when it's time to get help? How do you know that this is Long COVID?
James Jackson, Psy.D.:
We assume something is Long COVID largely because COVID is the best explanation for the changes that have occurred. So, someone let's imagine someone who was a high functioning person. They weren't chronically ill. They didn't have a lot of challenges necessarily. They develop COVID three months later, they have a wide array of health problems. Nothing else has happened. They haven't been in a car crash. They haven't had a stroke. They haven't been hospitalized for any other reason. The only explanation, seemingly, is the effects of COVID. That's Occam's Razor right there, I think, right? Which is the most efficient, I'm not much of a philosopher, but I think the idea is the most efficient explanation is probably the right one, right? So, I think that's why we think in many cases, "yeah, this is probably due to COVID, because COVID is the only phenomenon that happened to you." With that being said, I think it's very confusing to patients and it's confusing to their families how on earth it is that they got from point A to point Z, that is, "I'm so fatigued. I'm so weak. I'm so traumatized. How on earth, right, did that happen on the heels of such a very inconsequential event that happened? How did it happen?" And that's something that is really vexing to patients, it's confusing. That's an area where we have to do a lot of education often.
Christina Brown Fisher:
Dr. Jackson, in your book you seem to not appreciate the term “brain fog” being used as an indicator of long COVID, that the symptoms people describe are really a result of “brain injury.”
James Jackson, Psy.D.:
It's a great question, a great comment that you're raising, and I'm glad we're talking about it. That is this issue of brain fog versus brain injury. Brain fog is a foggy forgive me, a foggy term, right? Who knows what brain fog means, right? That's what our patients regularly report. I think if you talk to 100 primary care providers at Vanderbilt or elsewhere, they would have 80 different definitions of brain fog, right? People don't really know what it means. And it also sounds, I think, not so serious, "ah, you've got a little brain fog." But when you talk to our patients, patients with Long COVID around the world, what you find is that the impact of their cognitive problems is very problematic. It is expressed in, leaving a pan or a pot on the oven with the oven on, right? It's expressed in, putting in metal in the microwave. It's expressed in backing into a car in the parking lot, forgetting where you park the car, right, and taking the wrong medication, all of the classic things.
Christina Brown Fisher:
And everything that you just described. Dr. Jackson I experienced following my traumatic brain injury. I left items on a burning stove, forgot to put the vehicle in gear. But I had a traumatic brain injury. I had a very distinct event. That's not necessarily the case with some of these patients, particularly if these symptoms are developing weeks, if not months or even potentially a year later.
James Jackson, Psy.D.:
Exactly right, exactly right on two fronts. These are fairly identical functional symptoms that people with Long COVID have, to the symptoms that people within a traumatic brain injury have, you're right. You're also right that, strictly speaking, this is not a traumatic brain injury because there's no external trauma, right, that happens. Which is why if we go down deep, this will be not a TBI that people experience. It would be something called an ABI. ABI is the lesser-known cousin, right, of a TBI. Acquired brain injury, and those happen often due to internal processes, not external medical processes, inflammation, 101 other mechanisms that drive these injuries. And when we look at the brains not of all Long COVID patients, but of some we see atrophy, we see brain damage on MRI's, we see indicators that are not dissimilar from those of people with mild cognitive impairment or a mild TBI.
Christina Brown Fisher:
How do you know when it's time to get help?
James Jackson, Psy.D.:
I look at two criteria, and those have to do with persistence and what you might call significance or intensity. So, persistence would be, these problems don't seem to be going away. Right? They're staying around. These cognitive problems are persisting, um, that's, that's one. But two is not only are they persisting, they are also significant enough now that they're disruptive, right? They're disrupting my daily life. If they're persisting and they're so mild that they're like a pebble in my shoe, I might not care a lot about those, right? If they're persisting and they're not impacting my day-to-day life much because of the nature perhaps of the life that I'm living, that may also be okay, right? If I'm digging ditches for a living, the mild cognitive problems I'm having might not be impairing at all. Right? But if I'm a journalist, if I'm an expert in constitutional law and I'm having to make compelling arguments in front of a Supreme Court. If I'm physician, as a lot of our patients with Long COVID are those mild cognitive problems, even if they're very mild, the impact of those is quite profound. So, I think the invitation to your audience, if they have Long COVID or know people with Long COVID is if these problems are not going away and they're significant enough to cause disruption, let's not stop at go and collect $200, right? Let's proceed and get the help that we need, get the diagnosis and the help we need.
Christina Brown Fisher:
Let's talk about that, because I think a lot of times when we talk about cognitive deficits or dysfunction, it's so broad and it can be really challenging to really kind of nail down what that is. I know for myself, in the aftermath of my own traumatic brain injury, it was quite clear. I could not remember a lot of things. To the point that sometimes I was not necessarily safe because, for example, I'm in a vehicle and I'm forgetting to shift gears properly. So that's pretty obvious, right? But you talk about in your book, for example, someone who I think was a woman who was baking something that she loved, enjoyed to do. Now, all of a sudden, following a recipe was really, really challenging. Can you explain to me what that is indicative of, what cognitive deficit then is someone potentially suffering from when they start to see these subtle changes, or not so subtle changes following COVID?
James Jackson, Psy.D.:
I'm glad to engage this, and you're right. Sometimes they're subtle, sometimes they're not so subtle. It varies widely. But but this specific example you mentioned and there are many more that could be shared has to do with what we call executive functioning. Executive functioning is probably the most important cognitive domain in that that nobody's heard of, right? Like the man on the street may not be familiar with executive functioning, right? But executive functioning, which is influenced by things like the frontal lobes and the prefrontal cortex, etc., executive functioning involves planning, multitasking, engaging in tasks that involve multiple steps, sequencing, follows things like that, and often we see striking impairment in our patients in this area. Executive functioning, we refer to that as executive dysfunction. It's dysfunction and it is probably one of the primary areas where we see impairment. Executive functioning impairment. Impairment and attention impairment and processing speed. You mentioned memory and certainly a lot of our patients report problems with memory. When we drill down deep and look at what's going on, often their problems are not actually related to memory. Often their problems are problems with attention, but they mimic problems with memory, right?
Christina Brown Fisher:
Can you give me an example? What would that look like?
James Jackson, Psy.D.:
So I run a lot of errands to the grocery store near our house, and the way this normally goes is my wife tells me what I need to pick up, and then she usually says, "Do you need to write that down?" I usually say, “no,” and then I usually get to the store, I have no idea what I'm supposed to pick up. And that's not really because my memory is not working. It's usually because I was trying to watch the Pittsburgh Steelers game on our TV set, as I was walking out the door and as she was speaking to me, I wasn't really attending. I wasn't really attending. So, I got to the store. I thought, "Oh my gosh, is it olive oil? Is it apple cider vinegar? What is it, right?" It's not that I couldn't remember. It is that I wasn't attending. So, the the amnestic memory problems that are so classic in Alzheimer's disease, let's say we don't see those much in patients with Long COVID. But what we do see often are striking problems with attention. This is partly why one of the pharmacologic strategies that many neurologists, some primary care providers use with their patients involves prescribing Ritalin, involves prescribing a medication called Guanfacine. These are ADD medications, Adderall, Concerta. There is some evidence anecdotally, at least, that they can help patients with Long COVID. Why? Because the primary problem for many people with long COVID is attention. Even though if you ask patients, they'll tell you it's their memory.
Christina Brown Fisher:
So that's the sort of thing that you might go to your primary care provider saying, “I'm struggling with memory,” but according to what you're saying and also what you lay out in the book, that's where you need to be directed to a specialist who can then ask the appropriate probing questions to really get into the difference between memory, processing, attention, executive functioning?
James Jackson, Psy.D.:
Exactly right, it's so important that people take that next step of seeing a specialist and the gold standard specialist would be a neuropsychologist. They're the people who are the domain experts in distinguishing between deficits in memory versus attention versus executive functioning, as you noted. One reason this is important I think this whole conversation is important is I see so many patients, I can't tell you how many I've seen who develop profound anxiety on the heels of their cognitive problems because they're convinced that they have early onset Alzheimers disease, right? They're 42-years-old and they think they're about to be in the throes of aggressive dementia, and, and, of course, that's scary. So, it's, it's validating and it's useful to say to them, "I don't know what's going on, but based on our experience, we can be quite sure that it's not that. It's not that it feels like that, but it's not that," and that's a really helpful message and an anxiety decreasing message.
Christina Brown Fisher:
I remember following my TBI, I remember feeling as though I was going senile. I remember thinking that I had aged 40 or 50 years I couldn't remember. I was slow, I couldn't multitask. All of these different things, which in and of itself created anxiety, created sadness, and if I'm being quite candid, depression and that's something that you also talk about in your book, is the link, the connection to mental health challenges following a COVID diagnosis and Long COVID. How do you make the distinction between a mental health challenge stemming from Long COVID and the physical deficits that are also going on?
James Jackson, Psy.D.:
It's not so simple to make that distinction, and, and that's why it is best made in the context of a more comprehensive evaluation, often an evaluation that will extend beyond what you would get in your PCP's office in the context of a 15- or 20-minute encounter. It's so difficult to tease these out. I think what we know as it relates to cognition and mental health at least, is that they are closely linked to one another. And as your mental health gets worse, often your cognition is adversely affected equally. As your cognition gets worse, that often results in more anxiety and more depression. So they are, in my mind, inextricably linked. And we see this every day. Is there a distinction between the two? Sure, there is, but really, if you have one, you very often have the other. That is in the case of Long COVID, and we often will optimally treat people when we engage, in both of those. Mental health and cognition, both of them.
Christina Brown Fisher:
In your book, you say that cognitive impairment and mental health challenges are shown to exist in up to 50-percent of all Long COVID patients. So that means a long COVID patient is not only engaging with providers to treat what's going on physically with the cognitive decline, but they are also having to engage with providers to address mental health. That is a lot.
James Jackson, Psy.D.:
And it's especially a lot when you look at the fact that cognitive impairment impacts your ability to stay on top of appointments, to stay organized, to use technology, to go to that patient portal and figure out when your appointment is right, like cognitive impairment makes all of that harder. So, it is a lot. I've got a support group, two of them that I'll lead later today and if today's support groups are like any of the other hundreds of support groups we've led with Long COVID patients, this topic will come up. This topic of "I've got so many appointments, I've got so many doctors. It's a full-time job trying to navigate, visiting my neurologist, my physiatrist, my psychiatrist, my cardiologist. I could go down the list, right? It's a full-time job and it's a hard thing for patients having to figure out, often on the fly, not only how to navigate, but also how to advocate, how to advocate for themselves, which is no easy thing. We see these challenges in our rank-and-file patients, and we see these challenges even in our patients who are very sophisticated health care consumers, even they are not quite sure how to navigate this byzantine, complicated maze. And sometimes I'm not sure how to navigate it either.
Christina Brown Fisher:
I felt as though your book applies to anyone dealing with any illness, not just those with Long COVID, because it really is a handbook for how to navigate today's health care system. You talk about, for example, patients should try to have a friend or caregiver come with them, assist them in preparing for their appointments, and then, if possible, have them actually attend the appointments as well. But another thing that you brought up, which I was very curious about, was that you tell patients that they should also talk to their provider, particularly the primary care provider, about what their philosophy is about Long COVID. Why is that so significant when you talk about philosophy around Long COVID? I mean, Long COVID is, it's not something you can be philosophical about, correct?
James Jackson, Psy.D.:
You noted correctly that Long COVID is, right? And it is, I mean, I take it as a given. But there are a surprising number of physicians, of medical providers of various stripes who are skeptical, I think even today about Long COVID, right? Who are dismissive of long COVID. This isn't new news necessarily, right? There are patients with chronic Lyme disease, they're patients with chronic fatigue, many patients with many conditions who feel like they have had to swim upstream for a long time, right? And, and I think making sure that you have a COVID friendly provider who is not only believing you but is willing to advocate vociferously for you. I think it's really important. One of the things that has made me really sad during this hard season, during this hard pandemic season, is how many patients I encounter who say, "you know, I've gone to so many doctors, I've been so thoroughly marginalized by them, I've been so dismissed by them." I've heard it from enough people, I've heard it from people, and enough situations. I think it's a phenomenon that happens and it needs to get better. But instead of fighting city hall, I think a better strategy is find a provider that you don't have to convince. Find a provider that's going to believe you.
Christina Brown Fisher:
Okay, let’s say you’ve found your very supportive primary care provider, who recognizes your symptoms are indeed Long COVID. The next step, you say, is seeing a specialist. There are neurologists and neuropsychologists. Explain the difference and why it’s important to be seen by one or the other, or perhaps both?
James Jackson, Psy.D.:
So neuropsychologists and neurologists, they have a lot of overlapping expertise. They're distinct, but they're overlapping Venn diagrams, if you want to think of it that way. With that being said, often the subtle impairments that occur in people with long COVID are going to be identified more readily on a neuropsychological evaluation than they are in a neurology office. So, for that reason, the sort of order in my mind is let's start with a neuropsychologist. They'll see what they see. They can make that referral to a neurologist if they think it's necessary. We have had so many people start with neurology. Neurologists have a vital role to play, no doubt, but often the main thing a neurologist is going to do, they're going to refer you for an MRI. Typically, in patients with long COVID, that brain MRI is negative, not always, but typically. And a patient with that negative MRI they're going to feel frustrated, not very informed. But if you see a neuropsychologist, at a minimum, you're going to leave with a lot of information you didn't have before, and that's why that is a good first step.
Christina Brown Fisher:
And it's a good first step because the neuropsychologist is going to pick up some things that the neurologists won't pick up because the neurologist is looking at structural changes to the brain.
James Jackson, Psy.D.:
Exactly, that's exactly it, they're looking for more, more global, more profound. So the neurologist, acknowledging they have a vital role to play is not going to pick up minutia. They're not going to pick up minutia with regard to discerning whether a problem is attention versus memory versus working memory versus executive functioning. That's not their goal. The neuropsychologist is, on the other hand, going to give you that information and that is going to add a lot of value. Partly because that information, Christina, is going to lay the groundwork for cognitive rehabilitation. It's going to provide a roadmap because you're going to leave with a package in your hand. It's a cognitive testing report, and it is going to say the problems are attention. The problems are not memory, the problems are processing speed and those are the things, whatever they are, that that cognitive rehab expert, typically a speech and language pathologist, can then target. So, the neuropsychologist is going to add at the beginning a particular value, particular value.
Christina Brown Fisher:
And when you talk about cognitive rehabilitation, there is a difference between this idea of and I don't want to use the word cure because even that just sounds loaded, but there's a difference between rehabilitating back to, say, your pre-COVID state or now recognizing that you have a new normal. So, let's talk about cognitive rehab and expectations, quite frankly.
James Jackson, Psy.D.:
It's interesting, you know, the pioneer in many ways in the last many decades in the cognitive rehab space is the VA, is the Department of Veterans Affairs. And I thank you, by the way, for your service. Thank you for your service…
Christina Brown Fisher:
My TBI rehabilitation was at a V.A. medical center.
James Jackson, Psy.D.:
They do such extraordinary work at the VA and so many different VA hospitals across the country, and, and I'm, I'm blessed to do research at the VA often on these topics. But cognitive rehab doesn't promise, shouldn't promise that that it is a ticket to full recovery, right? It is not going to completely undo all of the challenges that exist in people. What it will do, what it should do is it should provide them an array of tools that they can use to be much more effective than they were, given the challenges they have, right? It's going to give them a set of tools. That's why we often refer to cognitive rehab as compensatory in nature. You're learning strategies and those strategies are maximizing the ability that you have, even though that ability might be diminished. We see, and, you know, I'm sure given your experience in the service, we've seen, you know, many people with brain injuries who are functioning in boardrooms, in police stations, in operating environments and courtrooms. People with brain injuries are thriving. Many of them are, right? Not all of them are. Many of them are with difficulty in some cases, right? But many of them are thriving, and so rehab is what facilitates that, thriving instead of surviving. Um, unfortunately, far too few patients with Long COVID are referred to cognitive rehab. And I think the reason for that, Christina, is that people have a notion of what a brain injury is, right? And that notion is a brain injury is, in our world here in Tennessee, you fall out of a deer stand 20-feet and you land on your head, right? You fracture your skull, right? That's a brain injury, right? You go to Iraq and there's a blast explosion, right? That's a brain injury, but the truth is that the term brain injury has a much, much broader valence, right? It applies to a lot of different things, right? And the more people think of long COVID, ((unintelligible)) which I think it can be, the more likely they are to refer to rehab. But too often, because in people's minds, this doesn't coalesce with a brain injury, people are never referred and unfortunately, they don't get the treatment that would often heal and help restore them.
Christina Brown Fisher:
And so that's where you as the advocate or your family or friend acting as an advocate becomes so, so critical. I mean, I just think about my time in neuro rehab. I felt like I was in a maze. I was in a labyrinth. I couldn't see my way out. But it's hard to imagine that when you were in the thick of it, how do you also have the appropriate bandwidth, the appropriate awareness? You don't even know what questions you should be asking. Where is the bridge to that?
James Jackson, Psy.D.:
I think the book is intended to be a bridge, and I've heard from so many people who have said just that, right? They've effectively said "this is a bridge,” right? This is a manual and maybe even a map. And I think there's a need for a map because, as you noted, people are not exactly sure how to proceed and and even when they are, it's really difficult, right? It's really scary. I'm wearing a bracelet, actually, in Vanderbilt colors, black and gold here, and it's got two words on it, and the words are "lean in." “Lean in,” right? And in our support groups, this is a phrase that I used so often. I've used it as I've spoken to myself related to my OCD, lean in meaning lean into hard things, right? You've got to do these hard things. And as you know, brain injury rehabilitation is a really hard thing, right? Coping with PTSD, whether it is due to combat or whether it's due to developing critical illness, it's a really hard thing. It requires a lot of courage, a lot of resilience, and yet, Robert Frost said “the only way around is through,” right? Like there's no shortcut. The only way around is through, and so one of the, one of the valuable things of the support groups is we create a climate where we're encouraging, empowering one another to lean in, to do these hard things. Because I think if you don't have any community support, it's almost impossible, almost impossible if you don't have family or friends or someone beside you.
Christina Brown Fisher:
You also write in your book about your own experience with obsessive compulsive disorder and how that illness has helped shape who you are today. You were diagnosed in 2018, is that right?
James Jackson, Psy.D.:
That's correct.
Christina Brown Fisher:
How has that now informed how you approach your patients who in some cases, as you noted in your book, can sometimes develop OCD as part of Long COVID.
James Jackson, Psy.D.:
It's been a really interesting journey for me. I'll go to see my psychologist actually tomorrow morning at eight, as a matter of fact, and, and I'm really proud because I've moved from once a week to once a month. To now every six months or so, I see her. This is a checkup. But, but it's been hard. It's been a hard journey for me with OCD. And, and I've learned a lot in the process. Right? And one of the main things I think that I've learned is that I can, do, can coexist with really hard things, right? You can live a life of beauty, of richness, of thriving even in the midst of hard things. And that insight, I mean, very literal for me, this idea that you can have really upsetting thoughts, very upsetting at any time they might be there, and even as that's going on, you can be productive, right? You can be engaging in meaning, in beauty and richness. So that message resonates a lot, I think, with our Long COVID patients who, who are fighting, this is what they're fighting. They're fighting this idea that “because I have Long COVID, my life is utterly ruined.” Right? There's this there's this all or nothing idea that many people fall prey to, “which is the only way I'm going to be okay is if my” insert condition, right? The only way I'm going to be okay is “if my brain injury goes away.” Right? The only way I'm going to be okay is if my OCD goes away. “The only way I'm going to be okay is if my Long COVID goes away,” and our invitation to patients is, hey, let's let's think about that a different way. Let's consider and embrace the idea that you can be okay even if your Long COVID never goes away.
Christina Brown Fisher:
And that's a hard that's a hard pill to swallow. That's really challenging.
James Jackson, Psy.D.:
It’s hard a pill, so funny because that's exactly what I was going to say. That's a hard pill to swallow, right? And you don't start there, like therapeutically, Christina, you don't meet someone for the first time and say, "Oh, by the way, you're going to be okay if you're long COVID never goes away," right? Like, it takes a lot of, a lot of tilling the soil, if you will, right before someone is ready to embrace that. But when people can embrace that, it's really powerful. In my own journey, I can remember, kicking around, making exactly no progress in my OCD treatment. And about a year and three months in, I remember I had a had an old white Buick SUV and I was sitting in it at the top of our hill at our house, and I was talking to my therapist on the phone, 15-months in and I remember in time one day saying, you know, I think I'm finally ready to accept this. I'm ready to stop fighting it. I'm ready to accept it. And when that happened, the entire landscape changed for me. The progress I started making was dramatic. And when we get people to the place where they can accept, "I don't like it. I don't want it. I didn't ask for it. I'm grieving it, but I'm accepting my long COVID." Often their lives begin to change.
Christina Brown Fisher:
Yeah, that's really challenging. I'm just thinking you're, you're a better person than me, because it took me, I mean, if I’m being honest, it took me a few years to really accept the ramifications of my own brain injury. I was in neuro rehab for a year, intensive neuro rehab for a year. But then I did have to go back and get cognitive rehabilitative therapy. In fact, had to go back and meet with a neuropsychologist, in, I think it was 2021, because I started noticing some things and I was thinking, “well, wait a minute, this hasn't happened since the car wreck and the TBI.” I started noticing that I was leaving the stove on, and even when the smoke alarm went off, it still didn't occur to me that I had left the stove on. And when I had to come to the reality that I needed, that I needed support again, it was very, very, very hard. And the reason why I bring that up is because you talk about in your book that there is this new normal, essentially, that people with Long COVID just at some point have to accept. And that new normal can be as simple as recognizing that, in my case, if I cook, I turn the light on above the stove range and that lets me know that a burner is on because the light is on. So, I want to talk about some of those strategies because you lay out a lot, a lot of different strategies that are at people's disposal. Let's talk about some of the big ones that you think have been the most effective for a broad range of your patients.
James Jackson, Psy.D.:
Far and away the most effective strategy for our patients has been something called ACT, Acceptance and Commitment Therapy Act. And ACT is interesting, you know, cognitive therapies often focus as you know, often focus on the idea that that I'm going to try hard to change my thoughts to try to make them a little more rational. Right? I'm going to catastrophize a little less. I'm going to learn some techniques to think a little more realistically about things. I'm going to teach myself to see the glass half full instead of half empty. Those are often cognitive strategies, right?
Christina Brown Fisher:
Before you go further, distinguish how this is different from positive thinking. We're in a culture right now where we've got a lot of people talking about “think positive, manifest what you want in life,” differentiate that.
James Jackson, Psy.D.:
Sure, yeah, like you I've turned the channel on before, and I've seen Joel Osteen on TV. You know, we lived in California not far from the Crystal Cathedral, where Robert Schuller was the the king of positive thinking. Right? Norman Vincent Peale before him. So so I'm not advocating and nobody should advocate, "hey, hey, just, just, just dream that things are a little better. Just imagine they're better and they will be right. Just pretend that they're not a problem, right?" That kind of avoidance doesn't serve anybody very well.
Christina Brown Fisher:
I like that you call it avoidance. That's really avoidance, is what that is, okay.
James Jackson, Psy.D.:
You know, I talk in my book. It is. It is. It is avoidance. In the book I talk about, a story, sad but true, right? Where the check engine light goes on in my car. In the one car that we have, and I cover it up with a note card and I keep on driving. Right? And one day the car breaks down, right? The engine dies and I sell it at the scrapyard the next day for $50, right? That was a sad day. My wife was really frustrated with me, rightly so, right? That was our one car. I just avoided. So, we're not in favor of avoidance, and I'm also not in favor of the idea that I just need to change the way that I'm thinking about things to make it more palatable, because that is also difficult. My, my approach, not mine, like, I didn't invent it, but the approach that I prefer is, "hey, your thoughts are your thoughts, right? They're positive or they're negative or they fluctuate from positive to negative, your thoughts or your thoughts." My invitation is, let's not worry about changing the thoughts so much. Let's focus more on changing your relationship with your thoughts. Meaning, "hey, these thoughts might be there, these negative thoughts, but man, those thoughts are not me, right? How do I detach from those thoughts? How do I realize that I'm not defined by those thoughts? How do I learn to notice those thoughts instead of being hooked by those thoughts, right?"
Christina Brown Fisher:
How do you do that?
James Jackson, Psy.D.:
One way to do it in Acceptance and Commitment Therapy is realizing, you know, thoughts are just thoughts. That's what they are. You know, they're rolling across the screen at any one time. We're having millions and billions of them in a day or a week. They're just thoughts. That's all they are. So, learning to notice them instead of attached to them is a key step here. Related to that, learning to notice that you have long COVID, right? And acknowledge it without becoming overly attached to that. That's a really important therapeutic strategy. And what I mean is if we take your case, you have a traumatic brain injury, you're a TBI survivor. But, my Lord, you are much more than that. Right? Like you are so much more than that, right? So much more. And one challenge with our Long COVID patients is many of them have been so, depleted, overwhelmed, hit hard. Whatever metaphor you want to choose by Long COVID that that becomes the defining mark of their life. I have Long COVID and and we're working hard to say, "Oh, gosh, let's draw a pie and let's make sure that Long COVID is a piece of that. But let's try not to make that a giant piece," right? "Let's try to reinforce that you are far more than your Long COVID," and ACT emphasizes that. And that's what I love about it on a personal level, I love the idea that I have OCD, yes, but I'm far more than my OCD. That's important because if the sum total of my life is a guy with OCD, if the sum total of the life of our support group patients is "a Long COVID survivor," I don't think that's very inspiring. Right? That's not where we want to stay and that's not where we want to take our patients.
Christina Brown Fisher:
You're saying we should change our thoughts into leaning into what's hard? So, leaning into that identity of Long COVID? How does that type of optimism impact the healing itself?
James Jackson, Psy.D.:
So, I think the challenge is how can you embrace your long COVID, everything that goes with it? How can you embrace it? But not too much? Right? That's what I tell patients. Let's embrace this identity, but not too much. It's part of who you are, not all of who you are. Positive thinking may play a role in that, but it's far more than just positivity, right? It's acknowledging that this is really hard and developing that conviction that even though it's really hard, I can do a really hard thing.
Christina Brown Fisher:
You do positive thinking, but you can also have toxic positive thinking, right, does more harm than good?
James Jackson, Psy.D.:
Yeah, toxic positivity is a problem. That's, that's looking at a challenge and pretending that it's all rainbows and unicorns. Right? That's not what we want to do.
Christina Brown Fisher:
When you talk about some of the technologies that are available, you mentioned Luminosity, and you mentioned actually quite a few different tools that are at people's disposal. One of the things that I often struggled with when it came to particularly the brain games, was recognizing what was legitimate, for starters, and what also is going to generalize. It might help me with the game, but then how does it help me when I'm not online? When it comes to technology, how do you recommend that patients engage? To whom should they be speaking about, what has the research to back it up; how do you verify it; where do you go to find those answers?
James Jackson, Psy.D.:
The term that you're referencing when you talk about how the games help and how much they'll help in real life is called FAR transfer. And that refers to this idea that I'm going to stop playing the games and the benefits are going to transfer both to other areas and for a long time in the future. Right? And that's the thorny debate here, which is, "gosh, you know, I'm playing on a keyboard. Is this just going to help me be more proficient at a task on a keyboard? Once I stop playing are all the benefits going to be eroded?" And that's what people debate. And where I, where I fall on this is the following, you know, a decade ago. virtually everyone who was a thoughtful scientist, with a few exceptions, was highly skeptical of the benefit of brain games. Since that time, there has been an emergence, I would say, of some evidence that suggests they may be, quite a lot more effective than some people have thought in facilitating improvement, especially in people's attention and processing speed. Those seem to be the areas where there are benefits and there are benefits that for some people seem to hold. The best player, I don't hesitate to say in this space is a company called Posit Science. They make a game called Brain H.Q. The N.I.H. they recently selected a half dozen interventions or so for people with Long COVID as part of this multibillion-dollar intervention. And Posit Science, Brain H.Q. was one of the technologies that they selected.
Christina Brown Fisher:
So National Institutes of Health has what is it called again, Posit Science?
James Jackson, Psy.D.:
Posit Science is the name of the company. Their product is called Brain HQ. So, I like it because anecdotally, at least, we've had a lot of patients experience it as effective, and this is important it's quite inexpensive. And the reason I mention expense is I think if something costs 30 or $40 a year, or $100 a year and it's not hugely effective, you haven't lost that much, right? If something costs $5,000 a year and it's not effective, then that begins to be a bit of a problem. Right? So, I like Brain HQ because I think there's good evidence that it works and because if it doesn't it work for you, you haven't risked much. You risked $50 a year, right?
Christina Brown Fisher:
Do you have to do it consistently? Is it the sort of thing where you do it for X number of weeks or months, or is it something that so long as you have these symptoms, you have to continuously be engaging with this particular technology?
James Jackson, Psy.D.:
It is something they recommend you do consistently. I do think there is some evidence that if you stop, the benefits will hold. This has been expressed probably best in a number of studies published in the Journal of the American Medical Association, in particular a number of studies that are under the rubric of something called the active trial. There was a there was a trial that relied on Posit Science Brain H.Q. called the active trial. And people in the active trial really seemed to benefit meaningfully. But I think the, I think the point you raised is a great one. That is, even though I think this is effective for some, even though I think this is worth a try or some, it is not a panacea. It's not a magic wand and they themselves would readily acknowledge that, Mike Merzenich who founded the company and other thoughtful scientists. They would acknowledge this isn't going to cure all the words, world's ills. If it helps you with your cognition, notably attention or processing speed, so much the better. But it's not going to solve every single problem.
Christina Brown Fisher:
Where are you suggesting people go, it sounds like you’re saying if people want to explore brain games, go to NIH, the National Institutes of Health, to review their list of evidence, research backed technologies. What about therapeutic recommendations? In your book you address, ACT, which we’ve already discussed, but also CBT, Cognitive Behavioral Therapy, and CPT, Cognitive Processing Therapy, what else?
James Jackson, Psy.D.:
Many of those therapies you referenced are specifically for post-traumatic stress disorder, CPT, cognitive processing and PE, prolonged exposure. That would be another one, EMDR, I think that's relevant because there are people with Long COVID and other chronic conditions who have PTSD, there absolutely are. And for them, empirically validated treatments are important. This is the point that I would emphasize that whether it is cognitive rehab, Christina, or whether it is mental health treatment, we want to engage in things that are effective, right? That have a track record of being effective. So, all treatments are not created equal. Right? They're just not. And I think if you're talking to your therapist, you know, laying on the couch and spending countless hours and days rehearsing and revisiting memories from your childhood. That's probably not necessarily going to help your PTSD related to Long COVID, right? You need you need effective therapies. And the term that people can Google or look up is empirically validated and empirically validated just means there's an evidence base that supports this treatment for this condition. So, for PTSD, cognitive processing therapy, and prolonged exposure, those are empirically validated. The V.A. has a great website at the National Center for PTSD. Anybody with PTSD can Google the National Center for PTSD. There is a lovely discussion about treatments that work or don't work. I think the key message here is what works for PTSD, works for PTSD, whether PTSD is due to COVID, or whether PTSD is due to a sexual assault, or whether PTSD is due to combat. What works, works. What works for brain injuries, works for brain injuries. So, it's not hugely relevant to me, it's not that I don't care, but it's not usually relevant to me whether the cause is COVID or whether the cause is a TBI. If you're having deficits in attention and deficits in processing speed, we're going to use the same approach. If you have executive dysfunction, we're going to use goal management training, and that's going to focus on learning strategies, teaching a technique called Stop and Think, and at the end of the day is probably going to help.
Christina Brown Fisher:
What are the barriers to access? You and I have talked about the VA system. Obviously, not everyone is going to have access to that. Not everyone is also going to have access to Long COVID clinics. What are kind of the challenges that people might find in trying to access the appropriate care?
James Jackson, Psy.D.:
It's a huge problem. I wish I could give a great answer beyond saying it's a huge problem. If you look at the most recent research and I probably need to revisit, I think there are 250 or so Long COVID clinics, plus or minus in the United States and many others around the world. There are several states that don't have a Long COVID clinic at all, and there are certainly locales where there are no Long COVID clinics within a day's drive, let's say. You know, I'm from Michigan. If you live in the northern edge of the UP it's a long way to go to get to Ann Arbor. Right? Could you get there? Yeah, I guess you could. Are you going to drive it? Probably not. So, so there are problems with access. Telehealth has changed the game that way a bit, um, made it better.
Christina Brown Fisher:
And just as effective, just as effective?
James Jackson, Psy.D.:
I think, in many cases just as effective. I think the problem as it relates to cognitive rehab at least, the problem of knowledge, that is awareness of what is out there is at least as big as the problem of access. The dynamic for me has been that when I say to thoughtful people, "Hey, you should get cognitive rehab." They say, "that sounds okay. What is that? I've never heard of it." You know, I say, "oh, you should see a speech and language pathologist," they say, "what is that?" You know, "I don't know what one is.”
Christina Brown Fisher:
They think it has something to do with if you can't speak, yeah, I had an SLP, but we were doing far more than just that.
James Jackson, Psy.D.:
They are uniquely capable, and they have a role to play.
Christina Brown Fisher:
What is their role with Long COVID patients?
James Jackson, Psy.D.:
So, you noted correctly, SLP's in the title Speech, and Language Pathologist is speech and language. And, and often people think, "gosh, my speech is fine," right? "There are no deficits in my language. I don't need an SLP," so in some ways that the title is perhaps not working in their favor. But their expertise, their training and their role has to do with helping people improve cognitive deficits, helping people improve deficits, find strategies, develop workarounds, learn new tools. And when we refer people to our SLP's and I have made dozens, if not hundreds of referrals during the pandemic. When we refer people to SLP's they get better, they reliably get better, and it is a beautiful sight to behold. And I wish I only wish that more people were quicker to embrace this idea of referring to SLP’s. Do we have enough SLP’s to see millions of people with Long COVID? No way, right? Like, no way. But are there a lot of them who are underutilized? You know, I think there are.
Christina Brown Fisher:
You've already identified a few different ways that people can engage to get support, whether that be finding, obviously a Long COVID clinic, even though they're far and few between, utilizing telehealth services and recognizing that they're not losing anything by not being in-person. We've talked about Speech, Language Pathologists, SLP’s, and also technologies and where to go to find the ones that have the research and have the data backing up their efficacy. We talked about the N.I.H. You also mentioned in your, in your book, which I thought was very interesting, which was engaging with universities and organizations that are conducting trials, that are conducting research as a way to help support as well. How does one do that?
James Jackson, Psy.D.:
Yeah, it's a great question and I think many people would love to take advantage of clinical trials, but they don't know how to go about it, and, and it's fairly simple. That is the first step is fairly simple and that is there's a website it’s www.clintrials.gov. It’s a very user-friendly website. You've got a box or two where you can type in breast cancer, you can type in TBI, you can type in and multiple sclerosis, whatever you want to type in, and it is going to find all of the trials around the world, certainly in the United States, but likely around the world that are registered with the federal government.
Christina Brown Fisher:
So registered with the federal government, that's important?
James Jackson, Psy.D.:
Well, here's why it's important, though, because the current rule is if you have a trial of any consequence, any, it really has to be registered with clintrials.gov. And and, if it's not, the issue is if it's not, when you get ready to publish your results, however sexy they might be, they're not getting published, it's a requirement. So, if there is a clinical trial and it's not registered with clintrials.gov, it could be fine, probably not, you know, maybe a little slipshod. So, anything that is worth pursuing, you're going to find on clintrials.gov. You type in Long COVID, type in Long-COVID and cognitive impairment, it's very user friendly. You're going to find a lot of options and you should pursue them.
Christina Brown Fisher:
What are you recommending to people who now might be concerned, more concerned about contracting COVID, much less Long COVID?
James Jackson, Psy.D.:
It's a dance that we do with our patients because on the one hand, we really want to affirm their anxieties and their fears about contracting COVID again, right? Because they have those. I'm thinking of one of my patients who contracted COVID at the, at the hairstylists, at the hair salon and wound up in the ICU, almost died, is deathly afraid of returning to the hair salon, right, doesn't want to get her haircut. Could she survive without going back to the hair salon? I think she could. Right? Might it be healthy for her to go to the salon, face that fear? I think it might. Right? So, at the end of the day, we want people to be thoughtful and we want them to be comfortable increasingly living with uncertainty. Right? We want them to flex their uncertainty muscle to be comfortable living with uncertainty because the only way I think to 100% ensure that you're not getting COVID again is literally to never leave your house. Right? It's to decide not to leave your house, and, and you can do that and you might not get COVID and there are other ills that might befall you. Right? Social isolation is a problem. Loneliness is a concern. Disconnection from others is an issue. So, we've got to balance the, the anxiety around COVID, quite rightly, with the need to engage with other people. And we provide some guidance. But at the end of the day, we leave it to patients to kind of figure out where they fall on that spectrum.
Christina Brown Fisher:
I like that. Flex your uncertainty muscles. I tell my son all the time that he needs to flex his patience muscles. I've never heard uncertainty muscles, but that's really that that's really great because, you know, everything, quite honestly, is uncertain. And if we live in this kind of paralysis mindset of “I'm not going to do this, or I'm not going to do that,” then you don't get to live much of a life at all.
James Jackson, Psy.D.:
Exactly. Yeah, exactly, exactly. We want to acknowledge that the limitations are real. The challenges are real. The situation is hard, and we want to acknowledge that, “oh my, we can do hard things when we're surrounded by a cadre of people, in a support group, in a community, with your provider,” You know I've been so inspired by the Long COVID patients that I've interacted with. You know, I think one thing I learned in my own journey with OCD is that I'm probably stronger than I know. And you probably learned that, I suspect as well. Right?
Christina Brown Fisher:
Yeah, oh, I learned it alright.
James Jackson, Psy.D.:
Yeah, me too, me too. So, one thing I've noted is, is our Long COVID patients, like so many people with chronic illnesses, they're stronger than they know, right? They're stronger than they know. And the challenge is to help them embrace the idea that they're stronger than they know. And as our Long COVID patients learn to be less fearful, they do better. They do better. So, if people are listening with Long COVID, my final comment lean into that fear, right? Don't be reckless, but let's lean into the fear and let's kind of wash our face, dust ourselves off. Let's lean into that fear again and let's not do it alone. Let's do it with support. Because trying to engage this solo is a recipe for disaster.
Christina Brown Fisher:
My guest --- Dr. James Jackson. He is a neuropsychologist and a research professor of medicine at Vanderbilt University. He leads the Long-Term Outcomes at the Critical Illness Brain Dysfunction and Survivorship Center at Vanderbilt. His new book is “Clearing the Fog: From Surviving to Thriving with Long-COVID, A Practical Guide” For more information about how to order the book and some of the insightful tools we discussed on today’s program, they’re provided in the show notes. Thank you for joining me.