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Millions of people have long COVID brain fog — and there's a shortage of answers

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As the Biden administration ends the COVID-19 public health emergency, millions of Americans who contracted the disease continue to suffer from symptoms associated with long COVID.

Neuropsychologist James C. Jackson says people with long COVID can suffer from symptoms like exhaustion, shortness of breath and disturbed sleep. Some of the most troubling symptoms are neurological: struggling to remember things, to focus, even to perform basic daily tasks and solve problems.

These symptoms can lead to a loss of employment, income and important relationships. Jackson, who is a research professor at Vanderbilt University, says that while long COVID was initially associated with people who became critically ill with COVID-19, he's seeing an increasing number of patients for whom the initial illness was relatively mild.

"This is a little bit of a mystery," Jackson says. "Many people with mild cases are profoundly debilitated [with long COVID], and some people with quite severe cases are doing fairly well."

Jackson's new book, Clearing the Fog, is a practical guide for long COVID patients and their families, giving advice on how to find help, and information on treatments and strategies for dealing with symptoms.

He notes while the scientific community rallied in response to COVID-19, there's been less urgency in the response to long COVID, leaving patients and families on their own to find solutions.

"We were very successful at mobilizing our best scientists, our best experts to develop a vaccine in record time," Jackson says. "That same commitment to doing something game changing has too often been absent in the context of long COVID... We're making progress, but I think we've got a long way to go."


Interview highlights

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Little, Brown Spark

On the number of people who have long COVID

There's a range of estimates that people report. In the book, I talk about the number 200 million [worldwide]. 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. I think the worldwide piece is important because this isn't a United States problem, particularly. 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.

On the type of cognitive impairment associated with long COVID

So the thing that people talk about the most is they talk about "memory problems." ... 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 ... 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.

On the mental health issues that often accompany long COVID

There's no question that mental health issues are tremendously important in the context of long COVID, and why wouldn't they be? 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. ... 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.

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. It's only anxiety." ... Patients worry that if they say, "I'm a little anxious," people will say, "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.

On why it's important to redefine "brain injury" in the context of long COVID

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 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.

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.

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.

On how social isolation may worsen long COVID

[People with long COVID] feel like other people don't really understand them and they feel like the overtures they have made to try to connect with people ... 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 has not gone necessarily very well. They often recede into this hermit-like existence. 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, 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. 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.

On how to ask for help with long COVID, especially if you lose your job or can't work

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. ... If you're cognitively impaired, you're obviously less good at filling out complicated forms. You're less good at advocating for yourself.

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 ... 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.

Sam Briger and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.

Copyright 2023 Fresh Air. To see more, visit Fresh Air.

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Dave Davies is a guest host for NPR's Fresh Air with Terry Gross.