DAVE DAVIES, HOST:
This is FRESH AIR. I'm Dave Davies. Tomorrow, the federal COVID-19 public health emergency declared by the Centers for Disease Control and Prevention comes to an end. But millions of Americans who contracted the disease continue to suffer from symptoms, many of them debilitating - a condition known as long COVID. Our guest today, James Jackson, is a recognized expert on the cognitive and mental health impacts of long COVID, which he says are quite common. He writes in a new book about people who are happy standouts in their jobs who, after getting COVID, are chronically affected by fatigue, cognitive impairment and depression or more serious symptoms such as delusions and hallucinations.
Jackson's book offers practical advice to patients suffering from long COVID, with suggestions on finding professional help and information on treatments and strategies for dealing with their symptoms. Jackson's knowledge is informed by his work with hundreds of long COVID patients, his previous work with patients suffering from post-intensive care syndrome and, to some extent, by his own struggles with obsessive compulsive disorder. James Jackson is a licensed psychologist specializing in neuropsychology and rehabilitation and a research professor of medicine at Vanderbilt University. He's also director of Long-Term Outcomes at the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt. He's the author of more than 150 scientific papers. His new book is titled "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide."
James Jackson, welcome to FRESH AIR.
JAMES JACKSON: It's really my pleasure to be with you, Dave. Thank you.
DAVIES: So let's talk about long COVID. First of all, how common is it? Do we know how many people suffer from it, either in the United States or worldwide?
JACKSON: There's a range of estimates that people report. In the book, I talk about the number 200 million. That's a huge number of people, and that's an estimate that is widely quoted. I think there's some debate among experts about whether it's more than that, about whether it's less than that. But if...
DAVIES: But that's worldwide, just to be clear. We're not talking about...
DAVIES: ...In the country, right?
JACKSON: ...Worldwide, worldwide. And I think the worldwide piece is important because this isn't a United States problem, particularly, you know? This is very much a global problem. And, indeed, some of the resources that could be used effectively to treat long COVID, those are even less available in some developing countries than in the United States. So that number, 200 million, that's more people than live in the country of Mexico.
DAVIES: And people who get it aren't simply those who spent weeks on a respirator - right? - it's - it affects people who had all kinds of experiences with the virus, right?
JACKSON: I think the idea, initially, was that if you were critically ill in the ICU with COVID, if you were on a ventilator, you would likely have - or at least be at risk for - these bad outcomes. And certainly, you are. Certainly, those people are. But I think the thing that surprised many people and the thing that has proved to be true and alarming is that vast numbers of people who were not hugely sick - that is, they had a very mild case of COVID, some of them report they had almost no symptoms at all - those are among the people who are profoundly impaired cognitively, from a mental health standpoint, physically. And this is a little bit of a mystery that is, many people with mild cases are profoundly debilitated, and some people with quite severe cases are doing fairly well. So we're not exactly sure why that is, but it's (inaudible), not a robust relationship between severity of COVID and the likelihood of these long COVID symptoms. They cast a long arc in the lives of people who were not very sick.
DAVIES: You have an interesting history in dealing with, you know, cognitive effects of illness. And in the 1990s, you and a neuroscientist, Ramona Hopkins, did some research (inaudible) on patients who had suffered from acute respiratory distress and, in many cases, had spent a lot of time in intensive care units. You looked at the cognitive impact here. Tell us about what you did and what you found.
JACKSON: Mona Hopkins is a preeminent neuroscientist in Utah. And in 1998, she published the very first paper on cognitive outcomes - cognitive impairment - in ICU survivors. She studied people with a condition called acute respiratory distress syndrome. And she found, I think, in one of the papers that 78% of people that she studied were cognitively impaired. That was in 1998. In about 2000, the research that I started to engage in began in earnest. We published a paper, I think, in 2003, looking at ICU survivors generally. And we found that between a third and half of those people who had been fairly healthy before - they weren't cognitively impaired - they developed brand-new cognitive problems.
In subsequent studies and in subsequent years, we have found out that those cognitive impairments ICU survivors have are as similar as we see in people with moderate traumatic brain injuries. In many cases, they're as severe as we see in people with early Alzheimer's disease. So huge numbers of people, lives derailed by cognitive impairment. And this is important because I think these insights about the effects of critical illness certainly informed a lot of my thinking about what might happen following COVID. And unfortunately, things did come to fruition in the way that we feared they might. That is, even people who are not in the ICU have profound cognitive problems.
DAVIES: You know, it was interesting, when you wrote about this research that you did - and this was pre, you know, COVID. It was other illnesses that put people in the ICU for periods of time. You asked the patients that you were doing research on whether they had ever been referred to somebody to deal with cognitive issues. What did they tell you?
JACKSON: Yeah. They told us, in one voice, that that had not been the case. And that was shocking to me and a little hard to believe. But as I consulted my colleagues around the country, Mona Hopkins being one, they really had the same experience. I think, unfortunately, physicians - thoughtful and well-meaning, excellent, clinically, etc. - they have a certain notion about what constitutes a brain injury. A brain injury is a stroke. A brain injury is, you know, you fall off a ladder and you crack your skull on the driveway. That's too often what is defined as a brain injury. And of course, it is.
The problem is there are a lot of other ways to get brain injuries. You can be in the ICU on a ventilator. You can have not enough oxygen get to your brain, something called hypoxia. That can be a brain injury. You can be delirious, which is deleterious to your brain. That can cause a brain injury. And you can have long COVID. That, too, can basically be a cause of a brain injury. So we need to change the paradigm a little bit so that people start appreciating, gosh, you can have this medical pathway to a brain injury and we need to refer you to cognitive rehabilitation. It's not only that you're in Iraq and you survive an IED explosion. It's not only that you're on the football field and have a concussion. There's a medical route to a brain injury, but no one - almost no one gets referred for rehab. We have to change that.
DAVIES: All right. So in the last few years, you've been seeing a lot of these symptoms from people who had suffered from COVID and had been in intensive care. One of the things you write in the book about this issue of people dealing with long COVID is that they're both battling their illness and the disbelief in the medical establishment. People just haven't made this connection enough.
JACKSON: It's a huge difficulty and it is fighting a war, if you want to use this metaphor, on both fronts, right? It's fighting a war on both fronts. And that is you're trying to put out the fire - or at least deal with the fire that is your illness, and you're being battered and buffeted, beaten down by this interaction with health care providers who you feel are dismissive of you, who, all too often, subtly say, you know, have you been to a psychiatrist? You don't have any physical symptoms. Maybe this is all in your head. People are explicit about this - primary care providers, physicians to varying degrees. But the net effect is patients often feel ashamed. They often feel a stigma. They often feel like they're being called lazy, or at least that is implied, that you just need to buck it up, get better, right? So that, along with the reality of these symptoms, makes it a tough challenge for these folks to endure days and weeks and months.
DAVIES: We're going to take a break here. Let me reintroduce you. We're speaking with James Jackson. He is a research professor of medicine at Vanderbilt University who has treated many patients suffering from long COVID. His new book is "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide." We'll continue our conversation after a quick break. This is FRESH AIR.
(SOUNDBITE OF GILAD HEKSELMAN TRIO'S "DO RE MI FA SOL")
DAVIES: This is FRESH AIR, and we're speaking with James Jackson, research professor of medicine at Vanderbilt University, who's treated many patients suffering from long COVID, often with cognitive impairment. His new book is "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide."
You know, you say that a lot of - a high percentage of patients that you deal with say their brains just don't work anymore. But you notice that - you note that what they're experiencing is different from Alzheimer's or dementia, generally. You want to tell us how and what kinds of things they are experiencing?
JACKSON: Yeah. Sure. Let's talk about that. So when we think of Alzheimer's disease in particular, we typically think of this drip, drip, drip, this sort of worsening progression that occurs where, a year in, you're at a particular place cognitively. Two years in, that's worse. Three years in, it's even worse. You're progressing. You're declining. With long COVID and cognitive impairment, in most of our patients, thankfully, we're not seeing this consistent progression degradation of cognition over time. It's a lot more like a brain injury in that way. And when we think of a brain injury, what we see are really significant cognitive problems, but often, they're a little more static. That is, they don't necessarily get worse, and sometimes they get better. So it's probably a little more like a brain injury than it is like Alzheimer's disease.
The exception to that is that, in older patients who develop COVID and then long COVID, in some of them, they already had a cognitive decline process in play. It was underground, hadn't emerged yet, hadn't really raised its head through the surface yet, but that process was at work. So in those folks, that declining process, we think, is probably accelerated in the context of long COVID. And some people are transitioning more quickly than they otherwise would to dementia or Alzheimer's. It's a concern in our older folks. In our older patients, we refer them to Alzheimer's disease research centers. We get them dementia evaluations. In our younger patients, we're hugely concerned about them, but when they say, hey, doc, I'm 30 years old. I'm 35. I'm 50. Do I have Alzheimer's disease? I'm happy that the answer, generally, is no, you probably don't. Let's check it out, but you probably don't.
DAVIES: Right. So what do they experience? I mean, there are different kinds of impairment. Just briefly, what are the kinds of impairment they are experiencing?
JACKSON: Sure. So the thing that people talk about the most is they talk about memory problems. They often say, oh, my gosh, my memory is not working. And memory, I think, is the term that most people know. If you surveyed people and said, hey, list the nine cognitive domains, let's list 11, you know, let's list cognitive functions, memory is the thing that everybody would reference, right? So when people say memory, that's what they think they mean. It may not be what they mean. So often they have memory problems, but more typically, the problems are with processing speed - that has to do with how quickly you can process information - and with attention and with this thorny thing that we call executive functioning.
And I say thorny thing because executive functioning is associated with ability to function in so many areas. People with executive dysfunction, problems with function, they have problems driving. They can't manage their money. They have a hard time managing their medication. They can't plan for the future. So executive dysfunction, processing speed, inattention and some deficits with memory. And if you put it together, because often people have all of that, it's a really toxic cocktail. And what it means for people is they have a hard time functioning in the workplace. They often aren't functioning well socially. They're not reading social cues. They're disinhibited. It's a huge problem at its worst.
DAVIES: Right. And so often, many quit their jobs because they just can't perform anymore, and then they lose their income, and they lose social relationships, and terrible, you know, cascading effects occur. So let's talk about what they can do, what one can do to try and get better. You know, you say that there are strategies and treatments. Some are restorative. That is to say, they try and help the brain regain some of its functions. But a lot of it is really designed to help patients manage the changes in their brain function, you know, their deficits, in ways that improve their lives. That's the general idea. What are some of the strategies that help people?
JACKSON: Yeah. I love this question. Back a decade ago, a little more than a decade ago, I spent part of a year in Ely, England, a lovely little town outside of Cambridge, at a cognitive rehab hospital, a very famous one at the time, founded by Barbara Wilson, an eminent neuropsychologist. It was called the Oliver Zangwill Centre. And when I went there, the goal was to really learn how to do cognitive rehab. And it was all about compensation. It was about teaching people skills to offset the deficits they had.
One big one we worked on was something called goal management training. It's really the best empirically validated - it's the treatment with the best evidence for problems with attention and executive functioning. And when I learned about goal management training, frankly, at the beginning I thought, oh, my gosh, you know, this is a strategy. How much does a strategy help? How much can a strategy help? And as I looked at the lives of the patients that were being treated at the Oliver Zangwill Centre, I quickly changed my tune.
I recognized that although this is strategies - it's planning, it's learning to use notes, it's managing your day differently - I realized that if people are integrating that into their lives so often, it is a game changer. And we see that, that when people get cognitive rehabilitation - not in every case, but reliably - they do better, they get better. That contrasts - that compensatory strategy approach, that contrasts with more of a neuroplasticity-based approach, where the idea is that we are going to engage your brain in a particular, specific way. And in so doing, we're going to try to leverage this natural process for growth that is at work. Those are neuroplasticity-based strategies. And often we recommend both of them, compensatory approaches, neuroplasticity-based approaches. And when we wed those together, people often get a lot better.
DAVIES: Yeah. It's interesting because I imagine a lot of people who are really frustrated that their brains just aren't working as they used to, and you're telling them, hey, you're going to give me lists and Post-it notes? But it really is a matter of sort of regular use and ways of thinking - you know, reminding yourself to be thinking about the way you're thinking. And over time and with practice, it actually makes a difference. And people can function in a way they didn't before. They could drive, for example, if they didn't before or, you know, attend a work meeting and function effectively.
JACKSON: Absolutely. The goal is that these strategies and ways of thinking, that they become integrated, that they become embodied, you know, second nature, if you will. Often, one key thing that happens in the context of those strategies is in the area of problem-solving. Where people get derailed often is that they can still solve problems with these brain injuries, but normally it might take them not very long. Now it takes them five times as long. Now it takes them 10 times as long.
So one of the things that happens is we teach people how to prioritize. We teach people that old saw - how do you eat an elephant? One bite at a time, you know? We're going to break some challenging tasks down so that you're not overwhelmed. There are a range of things that we're going to teach you. The people that are the experts' experts in this space are speech and language pathologists. And I would say, you know, may their tribe increase. We need more of them. They are an underrated set of contributors in this long COVID battle. And they've become, many of them, very dear to me because I've seen the way they've improved the lives of our patients.
DAVIES: And are these kind of treatments, this strategizing - because, you know, it's not a drug, it's not a surgery - are they covered by insurance, typically?
JACKSON: They generally are covered by insurance. I'm happy to say that piece isn't the challenge so much. The piece is finding these folks who don't necessarily grow on trees. In large- and medium-sized cities, you will find SLPs. That's the abbreviation, SLPs. But in rural America and small towns, there are not so many of them. For that reason, we're really thankful for telehealth, which has been a game changer during this pandemic season because often people are able to get speech and language pathology support virtually, get that cognitive rehab virtually. And in our experience, that still seems to be very helpful.
DAVIES: OK. So let's talk about the other kind of treatment where you're actually hoping to get the brain better, I mean, to kind of use its regenerative properties to function better. I mean, this is a big subject. But generally, what kinds of treatments are there? How well do they work?
JACKSON: They're often technology-based. So often, there are programs that are available either on a computer or an iPad. Sometimes they're proprietary. Some of them are broadly available in the community. You can buy a subscription to a brain-training program. It's a complicated topic because there have been a number of bad actors in the last 20 years or so in this space, who have noticed, I think, that there is a burgeoning interest in the brain. And they have created programs, things of that sort, charge people a lot of money for them and there's no evidence of their efficacy.
I was a skeptic about this as recently as probably five or six years ago, about the notion that technology-based solutions could improve the brain. But as more and more research emerges, I've become more convinced that this is absolutely an avenue that we need to explore. There are companies grounded in rigorous research. There's a program called BrainHQ that a lot of people engage in. There's a game that is FDA-approved that you can play on an iPad, a video game. It is FDA-approved for children and teens with ADD and ADHD. So we think that there are things like that that could be really helpful, perhaps, to people with cognitive problems in the context of long COVID.
DAVIES: We're going to take another break here. Let me reintroduce you. We're speaking with James Jackson. He's a research professor of medicine at Vanderbilt University and director of 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." He'll be back to talk more after this short break. I'm Dave Davies and this is FRESH AIR.
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DAVIES: This is FRESH AIR. I'm Dave Davies. Our guest is James Jackson, a psychologist specializing in neuropsychology and rehabilitation and a research professor of medicine at Vanderbilt University. He's done research on and treated patients suffering from the cognitive effects of long COVID. In a new book, he describes impacts on brain function and mental health from long COVID and offers practical advice for patients and their families. He also describes his work with patients suffering from post-intensive care syndrome and draws lessons from his own battle with obsessive compulsive disorder. His book is "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide."
So there are things that can help long COVID patients, strategies to help them day to day, kind of compensate for some of their cognitive losses and some promising techniques to help them maybe regain some brain function. But there's another thing that you write about that's a problem here, and that is mental health issues. You said you find that among the greatest barriers to improved cognition is untreated psychological issues. What are we talking about here?
JACKSON: There's no question that mental health issues are tremendously important in the context of long COVID. And why wouldn't they be? You know, if you've lost your job, you're socially isolated, you've lost a lot of hope, in that context, it's really normal, I think, to feel depression, to feel anxiety, to develop PTSD in some cases because it's hugely traumatic, this situation. And, in some cases, for people to have worsening OCD, increased suicide and suicidal ideation is another thing we're concerned about. It's a topic we engage in our support groups all of the time.
So mental health issues, not only are those a concern, but I think another concern is the stigma that many people feel associated with these. Many people are really, really reluctant to have a conversation with their provider about a mental health issue because for some of them, they worry, I think, that that provider will say, see, I told you so. It's only depression. You know, it's only anxiety. I should say parenthetically, you know, if anybody's had anxiety, I wouldn't add the word only to it. You know, anxiety can be massively debilitating.
But patients worry that if they say, I'm a little anxious, people will say, exactly. It's all in your head. And the reality is both can exist, right? You can have physical problems. They can be completely real. And along with that, you can have debilitating mental health problems. And that's what we see. Probably in a third of cases, that's what we see.
DAVIES: Your understanding of this, I gather, was informed, in part, by your own experience with obsessive compulsive disorder, which you developed just five years ago - right? - about 2018. That's kind of unusual, isn't it? Or is it?
JACKSON: It is. It is. I was diagnosed with it in 2018. 2018 was a season of my life where I had some health problems. I had just broken my ankle in a - I'll say, a mountain bike crash. It wasn't quite that exciting. I hit a mailbox and went flying through the air, dislocated my ankle. So I broke my ankle. I had diverticulitis. I had to have surgery, had some other stresses going on. And one day, almost as if you turned on a breaker switch from off to on, I started having these really disturbing, pretty obsessive thoughts that just wouldn't go away.
And I went to see a psychologist, and I said, you know, what's going on? And her office - just a stone's throw from here, actually - and she did a diagnostic workup, and she said, you've got - I think you've got OCD. And I said, OK, how do we get rid of it? Let's get rid of it. And she said, no, no. You know, you've got OCD. Like, you don't really get rid of it, Jim. We're going to find a way to help you live with it.
DAVIES: You didn't want to hear that, right?
JACKSON: Yeah. We're not living with this. Like, how do we burn it down? And she said, you know, we're living with it. And it took me about a year, Dave, to get to the place where I was ready to accept that I could live with it. And it wasn't a simple thing - still isn't. But what I learned and what's relevant here, I think, is I learned that, gosh, you can find a way to live. You can even find a way to thrive with hard, unwanted things. I don't want OCD. I don't want it today. I don't want it tomorrow. People with long COVID, they don't want long COVID. In both cases, you can find a way to live, to coexist with really hard things. That's the genesis of this insight for me.
DAVIES: So do you think this experience changed the way you understood and dealt with patients who were dealing with these life-changing problems?
JACKSON: Oh, my gosh. You know, the OCD was both so hard and, in some ways, oddly, quite a gift to me because I became, I think, a much more empathic person. I understood better than I had how things have the potential to get in the way. Before OCD, I had really powered through. You know, if I had a goal, I just found a way to achieve it. There weren't necessarily that many barriers, and suddenly, I had one. I had a big one. So I think I've become much more caring, much more empathic toward patients.
The other thing that's happened that I think has been really lovely is I'm a lot more vulnerable. I tell my story a lot more freely. In the support groups that we lead, I talk about my OCD, as appropriate, quite a bit. And I got a text from a patient just last week. She said some version of, you know, not most - most doctors don't share their quirks with us as freely as you do. It's super helpful for me to have you be vulnerable.
And I think when I'm able, in that group context, to be vulnerable, it gives people permission to take their own mask off and relate in a way that shows that they're not perfect. And I think that's really empowering. I think we could all find a way to be a little more empathic, to be a little more vulnerable, and OCD has helped me with that.
DAVIES: You know, obsessive compulsive disorder can take different forms in the popular imagination. And you write that yours was not the charming version that people joke about - people who over-organize their closets or, you know, compulsively fold their napkins. What did you experience with your...
JACKSON: The version of OCD that that I have is popularly referred to as pure O. And pure O refers to the idea that there are primarily obsessions without a lot of obvious compulsions. And for me, that takes the form of a lot of upsetting thoughts that come at random times. And it's hard to get rid of them, and they're pretty terrifying. I'll just give a quick example. Some time ago, around the beginning of the pandemic, I was watching a TV show, kind of a silly B-movie. And in the movie, some folks were on an airplane, and someone had written the word bomb on a piece of paper. And they had passed it to the stewardess. The movie unfolded from there.
But six months or so later, I got on a plane and I thought, oh, my gosh, what if I say the word bomb? What if I write the word bomb on a piece of paper? What if I hand it to a stewardess? I was terrified, actually, that that was going to happen. It didn't happen. That's not something I would do. But OCD can convince you that it likely will happen.
And the problem is, if you're worried that you're going to say the word bomb in an airport, before long, you decide not to go to the airport, right? Before long, you decide not to fly. If you're worried that you're going to grab the steering wheel and run over someone on the side of the road, before long, you stop driving. So the terrifying thing about OCD is if you give in to these fears, and they're ever-present, often, your world really starts to shrink. And I didn't want my world to shrink. I desperately didn't want my world to shrink. And so the process of therapy for me was identifying the fears, starting with the smaller ones, moving to the bigger ones, leaning into them again and again and again through something called exposure therapy - the scariest, hardest and best thing I think that I've ever done.
DAVIES: And over time, you learn to manage it.
JACKSON: Yeah. You know, exposure therapy stops you in your tracks. You know, you're exposed to things that you're afraid of, and you realize that you can find a way to tolerate them. So for me, the OCD waxes and wanes a lot. When I'm in more stressful situations, it tends to get worse. When I'm taking care of myself, it's usually a little bit better. It shows up in surprising ways at surprising times.
But I think what has happened is I've realized that I can learn to live with it using techniques that Steven Hayes and others invented in the context of something called acceptance and commitment therapy. I've learned that I can live with really hard things. And this is the invitation for our long COVID patients - not casual, not glib, but there are hard things. You don't want them. They're physical, they're mental health-related, they're cognitive. If they're not going away, we've got to find a way to deal with them. How can we help you live with them?
And that's what I've learned from my OCD, that I can live with this. I don't want it. And you can live with yours.
DAVIES: We're speaking with James Jackson. He's a research professor of medicine at Vanderbilt University who's treated many patients suffering from long COVID. His new book is "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide." We'll continue our conversation in just a moment. This is FRESH AIR.
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DAVIES: This is FRESH AIR, and we're speaking with James Jackson. He's a research professor of medicine at Vanderbilt University who has treated many patients suffering from long COVID, many of whom have cognitive impairment. His new book is "Clearing The Fog: From Surviving To Thriving With Long COVID - A Practical Guide."
You know, you have a chapter about social isolation, and it's certainly not surprising that people who suffer, you know, these cognitive impairments and mental health issues would tend to lose touch with people that they know. And, like, I mean, a lot of studies show that. But why do long COVID sufferers find themselves so isolated?
JACKSON: There are a variety of reasons. One of them is they feel like other people don't really understand them, and they feel like the overtures they have made to try to connect with people who didn't develop long COVID are often met with negative sorts of things. That is, they engage with people - they're wearing masks. People look at them with a side eye. They feel embarrassed. Often people don't get how impaired they actually are because they don't look impaired. So often they've tried to connect socially. That is not gone necessarily very well. And they often recede into this hermitlike existence.
You know, often their fatigue is very confining. Couple that with fears about getting COVID again. Their world gets smaller and smaller and smaller. And the problem with that, I think, is as a point of fact, we know that the more social support people have, the better they do. The less social support they have, the less well they do. And as people recede into that house or that apartment, sometimes that room, they lose those social connections. And not surprisingly, they get more and more depressed.
DAVIES: You have advice on how to think about returning to work, some other practical issues like that. And then there's the issue, I guess, ultimately, at some point, of whether, you know, disability assistance is warranted and available. You know, since the Americans with Disabilities Act, I mean, employers have been required to provide, you know, accommodations to people with disabilities. Can that be required from people suffering from impairment related to long COVID?
JACKSON: It can be. It can. And we see some great success stories, and we see some stories that are really sad. You know, we see some individual employers that are happy to play ball, that are happy to grant thoughtful accommodations, that bend over backwards to retain employees. And we see some companies who see an opportunity perhaps to be rid of someone who is struggling, and they take that. You know, we see the best, and we see the worst.
But there are recourses. There are legal processes. There are ways to advocate. And we encourage people to do that. And I encourage my fellow health care professionals, psychologists, physicians, et cetera, to really advocate aggressively for their patients in this way.
I've got in my office a stack, literally a stack of disability-related papers and paperwork that I'm in the process of filling out right now. That advocacy function is really important. People need us, and with thoughtful letters, thoughtful legal consultation, people can get accommodations, they can remain in a job. But this is really stressful, and for many it's an uphill climb and something we need to do a little bit better at, I think.
DAVIES: And is Social Security disability insurance available to people with long COVID?
JACKSON: It is. Social Security, short term disability, long term disability for some people - there are a range of options that are available, but people need to be aware first of what is available. They need to think of how to ask for it. And where cognitive impairment comes in and is very relevant, unfortunately, is that if you're cognitively impaired, you're obviously less good at filling out complicated forms, right? You're less good at advocating for yourself. And that's where family members come in. That's where friends come in.
Asking for help is one of the things we work on in our support groups almost constantly - asking for help, the right and wrong ways to ask for help. The research says that if you ask someone for help - whether it's to take you to the store, whether it's help in filling out a form - if you ask them directly, they'll almost always help. If you send them an email, they often won't. So learning to ask for help - it's an important skill, and it's one that people with long COVID unfortunately need to learn.
DAVIES: Before we go, I wonder what's happening in terms of research on finding a cure for long COVID. I mean, well, let me ask this. Do we understand the biological mechanisms underlying long COVID - how this virus creates these ongoing problems?
JACKSON: I think it's a really complicated question. And the reason it's a complicated question is because, although we've been talking about long COVID as if it's a monolithic thing, as if it's a monolith, there in fact are probably many different kinds of long COVID. You know, there's long COVID with primary cognitive problems. There's long COVID primarily driven by fatigue, et cetera. And all of these likely may have some different mechanism. Many of those mechanisms likely have to do with inflammation. They may have to do with clotting. We've got a lot of work that we need to do.
That's both in the basic science space, that's in the translational, the clinical space. We need more randomized controlled trials. I think we were very successful, as you know, at mobilizing our best scientists, our best experts to develop a vaccine in record time - huge success. I feel like that same urgency, that same commitment to doing something game changing has too often been absent in the context of long COVID. I think we need that same urgency that we had to develop the vaccine to be aimed at developing long COVID therapeutics. We're making some progress, but I think we've got a long way to go.
DAVIES: Well, James Jackson, thanks so much for speaking with us.
JACKSON: It's really my pleasure. Thank you so much for having me. Have a lovely day.
DAVIES: James Jackson is a research professor of medicine at Vanderbilt University and director of 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." Coming up, Maureen Corrigan reviews Claire Dederer's new book about how to regard works of art whose creators have done terrible things. It's called "Monsters: A Fan's Dilemma." This is FRESH AIR.
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