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Brian Lehrer: It's the Brian Lehrer Show on WNYC. Good morning again, everyone. We'll turn now to one of the more confounding public health stories of the COVID era with a look at brain fog. We haven't had a good medical description of what causes it, I don't think, and still don't all that much but we're starting to get a better appreciation for at least how widespread of a problem it is. Three months after an initial COVID infection, somewhere between 20% and 30% of people have reported lingering brain fog.

Among long haulers, brain fog is a reported symptom of about 65% to 80% of the time. That's according to a few national institutes of health studies cited in an article by our next guest, Ed Yong of The Atlantic. Now, let's be clear because the term brain fog isn't all that specific, you might get the impression that it's a big umbrella of cognitive impairments, distraction, fatigue, whatever you want to apply to it but it's actually more narrow than the label might suggest.

What do we know about brain fog today that we didn't when the pandemic started, and what can be done about it at a policy level, and at the patient level? Joining me now is Ed Yong, science writer at The Atlantic. He's covered so much of the pandemic and has come on a number of times on this show to talk about some of his really important articles along the way. Ed, it's great to have you back. Welcome back to WNYC.

Ed Yong: Hi, thanks so much for having me again.

Brian Lehrer: Let's start basically if you could describe what brain fog as a symptom is, and maybe just as importantly, what it isn't.

Ed Yong: Right. It's often jarringly referred to as being no more than a hangover or the kind of fatigue you get when you're a bit tired, a bit sleep-deprived. People who have it hear no end of other people saying things like, "Oh, we're all a bit off our game. It's a pandemic." Despite that stereotype, and despite the slight woolly-sounding name, brain fog actually is very specific. In almost all cases, it is a disorder of executive function. That's the mental skills that include holding things in mind, focusing your attention, and blocking out distractors.

Those skills are so foundational, that if you lose them, even really simple tasks that most of us do without thinking require conscious effort full of thoughts, and become almost absurdly difficult. People who've had brain fog have told me that they've struggled with things like reading, just making sense of words strung together, driving, just holding something in mind for a long time.

Even something as mundane as unloading a dishwasher. You have to recognize the objects there, you have to remember where they go, you have to hold all the information in mind when you put the object in the right place. Even that can be too hard for a lot of people who are really struggling with the symptom.

Memory also takes a hit because your brain neither efficiently chooses what kinds of information to store nor then retrieves that information well. A lot of brain fog manifests as what looks like short-term memory loss but this isn't a neurodegenerative condition that affects the elderly. It's not dementia, it's not a mood disorder like depression or anxiety. It's definitely not like stress, fatigue, anxiety, you name it. It is a very real and profound neurological disorder that affects a lot of people with long COVID and a lot of people with non-COVID conditions that have occurred long before the pandemic.

Whether you're talking about traumatic brain injuries, other complex chronic illnesses like ME or fibromyalgia, people undergoing chemotherapy for cancer, most of these conditions have been neglected, stigmatized, and marginalized, which is why relatively little is known about this condition and why it is so often mocked and trivialized, but it is very real. It has a huge and debilitating impact on the people who have it and it is time for everyone else to really understand what it means and pay attention to it.

Brian Lehrer: Listeners with brain fog help Ed Yong and us report this story, 212-433-WNYC. If you believe you have brain fog caused by COVID or for that matter, caused by any of the other conditions Ed just listed, but particularly if you think you have brain fog caused by COVID, call up and describe it as specifically as you can. Call in and tell us how it's affected your life, like how you've had to reshape your behaviors and your schedules, and maybe your relationships and maybe your work to manage around the brain fog, 212-433-WNYC, 212-433-9692, or tweet @BrianLehrer.

What has your doctor advised? What kind of life hacks or medical hacks or actual medical treatments have you or your doctor come up with to make it possible to live with your case of brain fog whatever that looks like to you? Let's have the brain fog conversation. Let's have you with COVID-induced brain fog that you're experiencing help have a conversation about how to manage it and what needs to be done and what questions need to be answered, for that matter, in addition to whatever we may think to ask. 212-433-WNYC, 212-433-9692, or tweet @BrianLehrer.

Ed, you describe some of the range of symptoms, how do you find it's affecting people's lives?

Ed Yong: Hugely. We've talked about the list of things that people struggle to do, the really basic things of everyday life. Buying food, making meals, reading, driving, working, all of these things become harder. Now, there's a range of presentations, a small number of people spontaneously get better back to baseline, some people don't get better. I've talked to people who have been sick since the very start of the pandemic for more than 900 days.

I've talked to people who've had brain fog from other pre-pandemic illnesses who have been sick for decades, people whose entire careers have been curtailed. I spoke to a woman named Fiona Robertson, whose brain fog stopped her from studying theoretical physics in college. She talked about once sparkling, being able to understand how the universe works through the complex math that she was studying and that entire pathway was shut down for her because of her experience.

A lot of people, probably the majority of people do get better over the course of many months but the most common story I think is you get better and you can get on with a relatively normal life but often with extreme effort, things are slower, you need longer recovery periods, you need a lot more mitigations. A lot of people never quite get back to their previous level.

There's a lot of people who were high performance, and now feel average, who can't do tasks that they used to do really easily unless they write out every step and go through the arduous checklist process. There are people who can do things like work and drive and so on but they have to make sacrifices, either they need long recovery periods afterwards or they might have to cut out other things like socializing, for example. There's a huge cost to even people who have "recovered" and I think that that piece is massively missing from the societal conversation around COVID and its long-lasting impact.

Brian Lehrer: What do you mean there's a cost after you've recovered? What does that cost look like?

Ed Yong: Like I said, firstly, either you might need a lot of mitigations. You might need a lot of recovery periods built into your life because even small amounts of mental exertion can be extremely draining.

Brian Lehrer: That's during. If I understood you correctly, you just said, even after people have recovered, they're paying a price. Or did I misunderstand?

Ed Yong: That's what I mean. When we talk about recovery, in most cases, a lot of people do better but don't get back to their previous baseline. That's what I'm hearing from patients or from clinicians who treat long haul as in people with other similar illnesses. There is still a gap between what life was like and what life is like now.

For some people, that gap is manageable and tolerable. For some people, it isn't. Sometimes it depends on what kind of job you do, to what extent executive function is necessary for that. There are many cases in which people I've spoken to are, say, back at work, for example, but they just don't feel like they are performing in the way that they used to be able to. Their career options feel dimmer, things are just harder. They are a bit slower, they require more effort.

Brian Lehrer: Before we go to some of our callers and it probably won't surprise you that our caller board immediately exploded and filled up when we invited people with brain fog to call in. Do you know the mechanism, just biological science, know the mechanism by which COVID leads to all these symptoms that you've been describing? Like when it came to COVID, and the lungs, especially early on, I think it was an inflammation reaction, as well as some other things. Do we know the mechanism when it comes to brain fog?

Ed Yong: Yes and no. There have been a bunch of different hypotheses and some really interesting data coming out. I can give you some pretty good guesses as to what the mechanisms are with the caveat that there's still uncertainty around all of this. For example, you talked about inflammation, we know that inflammatory chemicals can travel from the lungs to the brain, and there, they disrupt some of the cells that normally play a supportive role for the nervous system, that help to clean up detritus and prune our neurons so they work efficiently. A lot of those cells go berserk, they go rogue, and they cause more damage than good.

As a result, parts of the brain involved in memory might produce fewer new neurons. The neurons that we have might lose some of the electrical insulation that allows currents to flow along their length efficiently, which might explain why people with brain fog feel like their processing speed is shot. There are also other problems. COVID also affects the vascular system, the blood vessels, it damages them, it might fill them with small clots, that can lead to reduced blood flow to the brain and other body parts.

The brain is massively dependent on blood, oxygen, fuel. It's a gas-guzzling organ, it needs all of that stuff. If that supply is throttled, it just doesn't have enough to fire on all cylinders. I could go on, there's probably lots of different mechanisms at play, but what I really want to emphasize are two things. Firstly, this is not psychosomatic, this is not in people's heads, brain fog is a cognitive impairment caused by real neurological problems, it is caused by structural and chemical changes to the brain that we are starting to understand.

The second is that some of these things, prop things that I told you about also take place in other conditions. I talked about chemotherapy, for example. I talked about other post-viral chronic complex illnesses. If we had given more weight to those things in the pre-pandemic era, and actually studied them to the extent that they deserve to be studied, I would have a much clearer set of answers to you now and we would have a lot more to offer people who are now struggling with brain fog as a result of long COVID.

Brian Lehrer: Linda in Whippany, you're on WNYC with Ed Yong from the Atlantic. Hi, Linda.

Linda: Hi, thank you so much for the segment, Brian. Mr. Yong, I'm fascinated because it is the first time I have ever heard such a wonderful description of my brain fog. What you just said now, my ears are perking up. I'm like, "Oh my goodness." I started February 21, a day after my second shot, when I fell unconscious. Ever since then, long COVID hasn't stopped, the brain fog. I have activities to do, so I look at my calendar. I walk away, I have to walk back to my calendar, I forgot them.

I do this so often, and you're right, I'm struggling, and it's using a lot of energy and it's tiring me. I have dizziness that won't go away. What you just said now about blood clots going into the brain, I'm overwhelmed with what you're talking about.

Brian Lehrer: You had the misfortune of getting COVID just after you had your second shot. Have you been to doctors and have you gotten any medical advice that you've considered helpful with your brain fog?

Linda: At the beginning, absolutely no, no one was believing me at all. Finally, I did have one doctor who prescribed Paxlovid for me and it helped a little bit. I had a cough that wouldn't go away. That helped a little bit, a little bit with the dizziness but no, nothing else. Nobody's giving me anything.

Brian Lehrer: Did you say Paxlovid?

Linda: Yes, I'm sorry.

Brian Lehrer: Yes. Linda, thank you. Well, you heard how frustrating it is, Ed. Let me take one more call before you give a response. Let's hear what Michelle in Kingston has to say because she says she's currently being treated for long COVID cognitive issues. Hi, Michelle, you're on WNYC.

Michelle: Hi. Good afternoon, Brian, how are you?

Brian Lehrer: Good.

Michelle: I'm calling from Kingston, New York, Ulster County. I had COVID two times. I had it first in March of 2020. I possibly maybe had it three times, but I got it again in June, end of June this summer. I was given Paxlovid, and then after my Paxlovid finished, I got rebound COVID. The night that my COVID rebounded, I literally felt like my brain was being eaten alive by something. I just couldn't speak to people, I couldn't for days. It felt like a brain injury.

When my doctor asked me if I felt like I had brain fog, I said, "It feels more like brain damage, we should stop calling this fog." No one knew what to do with me. Other doctors dismissed everything that I was going through. I finally landed at our regional hospital down in the Southern part of Ulster County, and they have a long COVID program. I'm going there and getting physical therapy for the physical issues that I'm having, and then speech therapy for the cognitive issues.

A lot of the speech therapy has been teaching these strategies to work around my issues, giving how to make lists, how to set timers, how to make visual schedules for myself. When I have a conversation with somebody and I say I'll follow up on something, I have to write it down immediately or it's like the conversation never happened.

It's been difficult because I'm on City Council here in Kingston, and I have not been able to work my full-time job. When I show up just even for a little bit like a microburst, it will give me a migraine and send me backward, and I know that I've done too much.

Brian Lehrer: Michelle, thank you for reporting on all that. Very helpful for people, I'm sure. Interesting, Ed, to hear that the treatments they're giving her, if that's the right word on medicines so much when it comes to the brain fog symptoms, it's habits to get into to try to manage it. What's your reaction to these two callers?

Ed Yong: Thanks to both of you for sharing your stories. I'm sorry this is happening, and I know how hard this can be. I think a lot of the things that we've just heard are things that I've heard echoed throughout all the interviews I've done. The cost of this, like how much it affects your daily life, your ability to work, the denial of it, like how hard it is to get even basic recognition that you are suffering, let alone medical help. Sadly, almost everyone I've talked to has been dismissed and ridiculed and treated poorly by friends, family, colleagues, medical professionals, the people they trust most to hear them out.

This is a really, really common story. On the subject of treatment, what I do want to say is that most of the approaches of the people who I respect and hear from are about managing symptoms, sadly. There's little in the ways of what we might have considered like a cure, but symptom management can do a lot, it can help people regain a lot of their quality of life.

The most important thing that everyone on this show needs to understand is that you have to pace yourself. The single biggest mistake that people make when they have this condition is to try and push themselves back to normal. That can be really dangerous because often brain fog comes hand in hand with a different symptom that's very common called post-exertional malaise, which is different from fatigue.

It means that even if you exert yourself physically or mentally, even to a minor degree, you can crash in a really, really bad way that worsens all the other symptoms. This is a hallmark symptom of ME, chronic fatigue syndrome. It appears in a lot of these other complex chronic illnesses, it affects a lot of people with long COVID. What this means is that a lot of people with brain fog think, "I really want to get back to work, I want to push myself through it."

Sometimes they're told by their doctors to exercise their way out because as we all know exercise is theoretically good for the brain, but not if you have post-exertional malaise. If you are going to meetings, if you are trying to do emails, if you're trying to go for a run or anything like that, and you feel yourself much worse afterwards, you might well have post-exertional malaise, and you really need to pace yourself, because one of the things I hear really commonly from folks who have complex chronic illnesses is I pushed myself and got much, much worse.

For long COVID, for especially for people with post-exertional malaise exercise is not the right treatment. It could make things worse and a lot of doctors do not know this. Patient communities are a huge source of wisdom here in terms of this, in terms of like tips on how to pace yourself, how to learn, how to live with a condition that honestly is very difficult to live with. I think sometimes those communities have been a source of immense help to people who are struggling with this for the first time and who don't get the validation that they need from the people who they're seeking help from.

Brian Lehrer: It's interesting we're getting a number of callers expressing gratitude that you're bringing this out into the legitimacy open, let's say, people who have other conditions where before COVID brain fog was even more dismissed as in your head, or whatever it is, than it was. We're hearing from people with ME, we're hearing from people with MS, we're hearing from people with ADHD saying thank you, thank you, thank you. Judy in Mattawan, you're on WNYC. Hi, Judy.

Judy: Hi. Good morning, Brian. Thank you so much for taking my call. Can you hear me?

Brian Lehrer: Yes.

Judy: I just wanted to say I'm currently under the care of a neurologist who believes I have lung COVID and brain fog to it, and it has definitely interfered with my capacity to work. I have definitely gaps in my ability to remember things. For example, I went to text my friend the other day and I couldn't remember her name. I will get in the car, I've lived in the same area for five years and I can't remember which road to take to get to the place I've driven to for five years.

I have two young boys and they think it's funny when I can't remember things like the name for the pasta I'm going to make for dinner but it's not funny. If I'm reading something for work, I have a really hard time recalling what I've read or I've been in a meeting I've introduced myself and can't remember my title which is not great. It's not a good look when I'm meeting with clients.

I had COVID in December of last year and it's just been a really long time. My neurologist does think it perhaps-- we activated my Epstein bar, which I had a long time ago, so he does think it's an inflammatory thing, so he's sending me to a rheumatologist to see if we can deal with the inflammation, but it's been frustrating. It's scary if I'm in the car with my kids and can't remember where I'm going, that's not a good feel.

Yes, nothing has really seemed to help. It makes me really anxious to feel this way. It's not a good feeling, but it is. I really thank you for bringing this up as a topic because I'm not the first person. I know other people who have dealt with this short and long-term and it's scary to be a young person and managing this as a thing. It's scary.

Brian Lehrer: Thank you for being so clear in your description of the things that the brain fog causes in you. Everybody's hearts go out to you, obviously, and you've helped others just by describing it so well.

Ed, we're starting to run out of time in the segment. I think one theme that we're hearing from all the calls is that there are no specific treatments. She talked about seeing a neurologist who's sending her to a rheumatologist. They haven't come up with anything yet. The other caller from Kingston was going to Ellenville Regional Hospital where they're giving her behavioral things to do. Should we be asking if medications are on the horizon for this, or is that even the wrong question?

Ed Yong: One of the people I spoke to who studied the neuroinflammation idea is hopeful that if that's the case, then this could be reversible. If this was the result of brain damage that comes from severe oxygen deprivation, or like a virus directly infecting the brain for a long time, that might be a bit different. I think if the inflammation mechanism is right, then it does raise some hope.

Now, for that hope to be realized, we need to take this seriously. We need research. Frankly, we need research that should have been done decades ago when people with conditions like ME and all the other things that you named that have been neglected said that they were going through this and were cast aside. We would be in a better place to offer, to talk to, to help the folks who've called in today.

In lieu of that, while we wait for the medical establishment to catch up, I guess I would just say that it's down to everyone else to show people who have brain fog the necessary compassion that they deserve.

It's not funny. I agree with the last call. It's not funny at all. I think trying to actually understand what this symptom means, empathize with people who have it, and maybe make accommodations in our own lives or our workplaces so that the burden of having to live with this and trying to make the necessary mitigations shouldn't have to only fall on people who are struggling with disability themselves.

There's a lot that people who don't have brain fog can do to reduce the stigma that folks who have it feel to make sure that they don't feel the need to push themselves to a place where they might jeopardize their health even further.

Now, this is a thing that this, the pandemic, long COVID, brain fog, all of it has always been and remains a whole of society problem. It shouldn't just have to be down to the folks who are going through it to fight that fight alone.

Brian Lehrer: Ed Yong, Y-O-N-G, staff writer at The Atlantic, where he covers all things science. Listeners, thanks for sharing your stories on the phones, and Ed, thanks so much for joining us.

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