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If you can, I'd like you to think back to the start

0:38

of the COVID-19 pandemic. It

0:40

was early 2020 and it was

0:42

a scary time for everyone. In

0:44

part, there was just so much we didn't

0:46

know. It was an uncertain time

0:48

for me as well. I was trying to cover

0:51

the pandemic day in and day out on television

0:54

and also on this podcast, which back then was

0:56

called Coronavirus Fact Versus Fiction.

0:59

I have to tell you, I've been a doctor for 30

1:01

years now. And up until that point,

1:03

outside of HIV AIDS,

1:05

I had not really seen a brand

1:08

new disease class emerge so quickly,

1:11

so transmissible, so dangerous,

1:14

so deadly. There was a lot

1:16

to learn and

1:17

we all had to do it quickly.

1:19

So now flash forward to 2023, more than three years later.

1:24

And the truth is we are all still learning.

1:27

Perhaps no

1:29

aspect of this pandemic has raised more questions

1:32

than this mysterious phenomenon now

1:34

known as long COVID. I've

1:36

been treated

1:37

as COVID for 97 days. I'm

1:40

pretty much in the throes of it. They

1:43

are known as long haulers, diagnosed

1:45

with COVID-19, but months

1:47

later, still experiencing symptoms.

1:50

I'm experiencing symptoms, everything from blood clots, seizures,

1:53

tremors.

1:54

My

1:56

stomach is not what it used to be. Center

2:00

for Health Statistics now estimates

2:02

almost 7% of adults and more than 1% of

2:05

children have struggled

2:07

with long COVID at some point that

2:09

equates to millions and millions of

2:11

people. So as we continue

2:13

this journey through the brain on the podcast,

2:16

I wanted to know, how does long

2:19

COVID impact the brain? Does

2:21

the term brain fog even come

2:23

close to accurately describing what many

2:25

people are experiencing? And perhaps

2:27

most importantly, what can we do

2:30

about it? Today, we're going to

2:32

do a deep dive into what we know

2:34

about the long COVID brain, and

2:36

we're going to talk to someone who's been on the front lines

2:38

of this fight against long COVID. My

2:41

goal is always to have one

2:43

more thing that someone can try

2:45

that they haven't tried before. I'm

2:47

Dr. Sanjay Gupta, CNN's chief

2:50

medical correspondent, and this is

2:52

Chasing Life.

2:59

Okay, before we go any further, I thought it was important

3:01

for you to hear directly from someone who has

3:04

been dealing with long COVID. Because

3:06

what I've heard is that unless you've had it, you

3:09

probably can't truly understand what it feels

3:11

like.

3:14

Can you just tell me a little bit about your life before

3:16

this? Like, what were you doing? What was your life

3:18

like before all this happened?

3:22

I was an extremely busy

3:24

person, mom,

3:27

wife, dog mom. This

3:30

is Barbara Van Meter Nivens. Barbara

3:32

first got COVID in the fall of 2020, and it was an extremely

3:36

bad case. She had to go to the hospital,

3:38

she ended up in the ICU, she spent

3:40

nearly a month in the hospital before being released.

3:43

But here's the thing, even though she got to

3:45

go home, she was far from cured.

3:47

I went home on oxygen for 500

3:50

days. Her symptoms

3:52

were just not going away, and about

3:55

four weeks later, she saw a primary

3:57

care doctor hoping for some answers. And

3:59

I couldn't

3:59

understand why I still felt so bad,

4:04

why everything hurt. I was on

4:06

a walker. I was

4:08

crying.

4:10

And she patted my hand and she

4:12

said,

4:13

Barbara, you have

4:15

long COVID.

4:17

Long COVID completely upended

4:20

Barbara's life. When I first met her

4:22

in mid-2022, she told

4:25

me she hadn't worked in over a year. She

4:27

missed her stepson's wedding, her

4:29

niece's graduation, even her mom's

4:31

funeral. And what's more is

4:34

that she often had to deal with people who

4:36

didn't actually believe she had long

4:38

COVID. They were downplaying her symptoms.

4:41

What I was really struck by was how she described

4:44

the way long COVID actually feels

4:46

inside her head.

4:48

I feel like there's a virus in my brain and

4:52

it's changing.

4:55

It's changing things in my brain because

4:57

I can't think, I can't remember. I

5:01

just can't pull those things out.

5:04

Like I did before. It

5:07

was that phrase, changing things

5:10

in my brain that really stood out

5:12

to me. People often use the term brain

5:14

fog, but to people like Barbara,

5:17

the term brain fog undersells

5:20

it. And

5:22

it was people like Barbara that led my

5:25

next guest to go on a mission to uncover

5:27

the mysteries of the long COVID brain.

5:30

We were running out of beds. I still distinctly

5:33

remember in my lab we had a whiteboard

5:35

and we had the number of free beds,

5:38

free ICU beds just written on

5:40

the whiteboard and it was just going down every day.

5:43

This is David Petrino. He's a neuroscientist.

5:46

He's also director of rehabilitation innovation

5:49

at the Mount Sinai Health System in New York City.

5:52

Before the pandemic, his lab was primarily focused

5:55

on helping people recover from traumatic brain

5:57

injuries. They had just launched an app

5:59

for stroke survivors a place for them to

6:02

input their vitals and their symptoms so

6:04

doctors could then track the recovery. But

6:07

when ICU beds began filling up across

6:09

the city, he wanted to make sure

6:11

that the patients not sick enough to be admitted

6:14

didn't also get worse at

6:16

home. So what he did was he adjusted

6:18

the app to focus on respiratory failure,

6:21

and he started sending patients home with a pulse oximeter

6:24

and instructions to log their vitals on the app.

6:27

I still remember as March 15th,

6:30

we had our first patient join and

6:32

start being monitored. And

6:34

by April, we had about 8,000 people on the app. And

6:38

then the thing that happened was

6:40

around mid

6:43

April, we started

6:46

having people who had been on the app for a while.

6:48

Usually the trajectory was they

6:50

get sent home from the hospital, they get on the app, they

6:53

monitor their symptoms. And about two or three weeks

6:55

later, they say, well, thanks for everything.

6:58

I feel good. You know, I'll see

7:00

you later. By mid April, there

7:02

was like 20% of the people that

7:04

joined onto the app just weren't

7:07

getting better. And they

7:09

were reporting new symptoms. And

7:12

he says those symptoms were different

7:14

than what his team had been expecting. Organically,

7:17

people were coming up with extreme

7:19

fatigue, cognitive difficulties,

7:22

memory loss. They were telling

7:24

us that these were their problems, breathlessness.

7:27

They didn't say post exertional malaise.

7:29

No one knew what post exertional malaise was, but

7:31

they would say things like, I went

7:34

to get my groceries and then

7:36

I crashed. So crash was a big word

7:39

that was being used. I went downstairs,

7:42

my groceries were delivered. Carrying

7:45

them up the stairs back to my apartment caused

7:48

me to crash and I couldn't get out of

7:50

bed for two days. I

7:53

still remember we huddled as a group and

7:55

we said, what are we going to do? You know,

7:58

we don't want to tell them.

7:59

leave the app, but also

8:02

the app isn't helping them, that

8:04

this is something else.

8:06

Let me ask you a fundamental question. So you got these

8:08

patients who you're following on this app and they're

8:11

starting to describe other symptoms.

8:13

How do you separate them out

8:16

from people who may not have had COVID

8:18

but are just dealing with a very

8:20

significant amount of tumult

8:23

and anxiety in society at that

8:25

point? I mean, how

8:28

do you say for sure this is due to

8:30

COVID, that this is even long COVID? I'm

8:33

not suggesting it isn't, but I'm just saying as

8:35

a control group, what was your control

8:37

group here? Well, you

8:40

know, control group is

8:42

a term that we would use in research, right? The

8:45

wonderful thing is we were running a clinical program

8:48

which gives us perfect license to say

8:51

the one thing that all long COVID patients want to hear,

8:53

which is I believe you. In the early days

8:56

when we had thousands of people on the app

8:58

and several hundred were saying all

9:01

of these symptoms, we didn't

9:03

really need to say, oh, that's

9:06

long COVID and this is PTSD

9:10

or some sort of anxiety or depression

9:12

due to very rightly

9:14

so the world burning down around

9:16

us all. In the moment, we

9:18

just said to say, okay,

9:20

well, let's bring you in for an evaluation

9:23

and let's talk through

9:25

your symptoms and let's get a sense of what's going

9:27

on. What that got us very good at

9:30

was learning to characterize all the different

9:33

symptoms that we were seeing because we

9:35

were very exacting about it. Okay, you have

9:38

fatigue.

9:39

Let's measure your fatigue with a fatigue severity

9:41

scale because I want

9:43

to know how much fatigue. It's not good

9:45

enough for a clinician to say, oh, you're fatigued

9:48

and then write down patient complaints of fatigue.

9:51

But meanwhile, you're not really asking

9:53

how fatigued they are. What is the nature

9:55

of the fatigue? Same with cognitive

9:57

impairment. It's not good enough to write down.

9:59

brain fog in your notes. Okay,

10:03

is it executive function?

10:04

Is it short-term memory? Is it long-term memory?

10:07

What is the nature of the cognitive impairment

10:10

that this person's reporting? And let's

10:12

measure it. What about the brain

10:14

itself? What can we say at this

10:16

point happens to the brain after

10:19

COVID, at least in some patients? Yeah,

10:22

we're starting to learn a lot more about

10:24

what is happening in the brain during an acute

10:26

COVID infection. There was a truly

10:30

alarming paper that was published

10:33

in Nature about

10:34

two years ago now where a bunch

10:36

of scientists in the UK actually looked

10:38

at

10:39

brain imaging in not just people

10:41

with long COVID, but everybody who had

10:43

had COVID. And they showed

10:46

alarming changes in brain

10:48

size, as well as changes in cognitive

10:51

function after a COVID infection.

10:53

Even if the person that they were studying

10:56

didn't necessarily consider themselves

10:58

to have long COVID, their brains

11:00

had been changed. And that was

11:02

followed up with a study

11:04

that myself, Akiko

11:07

Iwasaki, we were both

11:09

really fortunate to team up

11:11

with Michelle Monge from Stanford

11:13

University. And we published

11:15

a paper showing that

11:18

when you infect rodents with

11:21

a mild form of COVID that only affects

11:24

their lungs, we were still seeing

11:27

chemical changes in the brain because

11:29

of the proliferation of these chemicals

11:32

called chemokines that then went into

11:34

the brain and caused damage to the

11:36

microglia, the cells that hold

11:39

together our brain cells. And

11:41

that was extremely alarming because when

11:44

we published that work and we saw this one chemokine

11:46

that seemed to be the culprit causing a lot of the

11:49

microglial activation, it was called CCL11.

11:53

When we tested our long COVID patients

11:56

for CCL11, we saw that

11:58

it was overexpressed. primarily

12:00

in the folks who had cognitive impairment, meaning

12:02

that there is some direct

12:05

brain activity going on, even

12:08

if the virus doesn't make it into your brain.

12:10

So

12:11

we understand that even

12:14

the systemic changes that can occur in long

12:16

COVID can cause direct

12:18

damage to the brain.

12:20

Basically, what Patrino is saying is

12:22

that the virus can cause direct impact

12:25

on the brain, even if

12:27

it doesn't directly attack the brain itself.

12:29

That's because chemokines, which

12:31

are small signaling proteins, unleash

12:34

a chemical reaction that can reach

12:36

the brain and damage the very scaffolding

12:39

for the brain cells themselves. And

12:42

then there are the dangers to our circulatory

12:44

system, our blood vessel system.

12:46

We're also, of course, seeing a

12:49

lot of research around inflammation of

12:51

the blood vessels that causes

12:54

these small circulating entities

12:57

called microclots, which are very,

12:59

very small clots. They're not large enough

13:02

to block a large blood vessel,

13:04

but they are large enough to block small vessels.

13:08

And not only have we been able to show

13:11

correlations between cognitive dysfunction

13:14

and specific amounts of microclots

13:16

circulating in the blood of people with long

13:18

COVID, we think that that could be

13:21

the story for persistent virus

13:23

and persistent COVID infection.

13:26

You know, I have three teenage daughters.

13:29

And one of the things I've noticed, just because

13:31

I have a lot of friends who are around the same age, that

13:33

there have been a lot of teen, and I would

13:35

say specifically teen girls, although that may

13:38

be my experience because I have all girls, but a lot

13:40

of teen girls who've developed something known as POTS,

13:43

which is postural orthostatic

13:45

tachycardia syndrome, basically

13:48

means their heart rate should up when they go from lying

13:50

to sitting or sitting to standing. And even

13:52

a little bit of activity will

13:55

make their heart rate really shoot up and they may feel lightheaded.

13:58

And, you know, these are girls who... who

14:00

before the pandemic were involved

14:02

in sometimes two or three sports, you

14:04

know, throughout the school year and now one

14:07

is kind of maybe even overdoing it for them. What

14:10

is the relationship between COVID

14:13

and POTS as far as you can tell?

14:15

Yeah, we published work in 2021

14:18

talking about how roughly 70%

14:21

of long COVID patients who are coming to our clinic

14:23

met American autonomic society

14:26

criteria for POTS. And

14:28

certainly we've seen a lot of individuals

14:30

with long COVID experience POTS.

14:33

We believe that the

14:35

most likely scenario of

14:38

why POTS is co-occurring with long

14:40

COVID is that the

14:42

vagus nerve, which is this long

14:45

nerve that runs through almost every

14:47

organ system in your body and does

14:50

a lot of what

14:52

we call autonomous functioning for our

14:54

body. You've heard of autonomously driven cars.

14:57

We've got this system

14:59

that just autonomously runs our

15:01

blood pressure, our heart rate, our breathing rate,

15:03

all of the things that our body doesn't

15:05

want us to think about, but needs

15:08

to regulate so that we can walk

15:10

and talk and do all the things that we need to

15:12

do. The vagus nerve can get knocked

15:14

out of balance by COVID in two different

15:17

ways. There's evidence

15:19

to suggest that it can be directly infected

15:22

during the acute period, which causes inflammation

15:26

and therefore dysregulation of the

15:28

vagus nerve. But also just

15:30

the general systemic inflammation

15:32

during the early days of COVID. We

15:35

heard a lot about this concept of cytokine

15:37

storm, which is our body producing all

15:40

sorts of inflammatory molecules. Well,

15:42

many of the inflammatory molecules that are specifically

15:45

produced during acute COVID are

15:47

irritants to the vagus nerve and they cause

15:50

vagus nerve inflammation. So seeing

15:53

dysordinoma and pots

15:56

associated with long COVID is

15:58

very common for us.

16:02

So, with all that in mind, how

16:04

do you correctly identify if someone

16:06

definitely has long COVID? Well,

16:08

Patrino has also been working for years now to

16:10

figure that out. In fact, his group

16:13

at Mount Sinai recently teamed up again

16:15

with Yale immunobiologist Dr. Akiku

16:17

Iwasaki on a study to see if

16:20

they could identify biomarkers for

16:22

long COVID, and the results were

16:24

recently published in the journal Nature. What

16:27

they did was they compared the blood samples from nearly 300

16:29

people, some who met the

16:32

diagnosis criteria for long COVID, second,

16:35

those who had COVID but who had fully

16:37

recovered, and third, people

16:39

with no evidence of infection. What

16:42

they found is that the groups differed in one

16:44

notable way, the amount of

16:46

the hormone cortisol. The long

16:49

COVID patients had lower levels of cortisol

16:51

in the morning compared to the people who didn't

16:53

have long COVID. Now normally cortisol

16:56

levels are highest in the morning to help wake

16:58

the body up, and they're lowest at night.

17:01

So the question was, is cortisol

17:03

the key to knowing if you have long

17:06

COVID? Is it the biomarker?

17:09

I'll tell you that Patrino, who co-authored

17:11

this study, doesn't actually think

17:13

that's the case. But he does say it's

17:15

a good start.

17:17

You know, Akiku and I are still analyzing that data

17:19

set, and we have a lot more papers

17:21

coming with a lot more interesting

17:24

findings around things

17:26

that are different in the long COVID population

17:29

versus the healthy control population. So we

17:31

need more of this work to be done. But

17:34

the second thing is, I think

17:37

that there is an interesting utility for

17:40

diagnostic tools like machine

17:42

learning to identify

17:45

cases of complex chronic illness. So

17:47

there are lots of conditions out there. Hypertension

17:51

is pretty black and white. You take your blood pressure.

17:54

If it's over a certain level, you get diagnosed with

17:56

hypertension, you know, hyperlipidemia.

18:00

same thing. We look at your cholesterol levels and

18:03

we make a decision over whether

18:05

or not you meet criteria for hypolipidemia.

18:08

For long COVID, long

18:10

COVID is an infection-associated complex

18:13

chronic illness. That means that

18:15

depending on your genetic history, depending

18:18

on your infection history, depending on

18:20

your past medical history, you will present

18:23

completely different from the last person

18:25

with long COVID. Some

18:27

things will be elevated, some things will be

18:29

diminished, and there's never going

18:31

to be this one unifying, you

18:34

definitely have long COVID biomarker.

18:37

I think it's never as simple as

18:39

just the one thing. The press

18:43

read through the article

18:45

and they said, low cortisol, that's it.

18:47

That's the biomarker. I'm like, please don't say that.

18:49

That's terrible. That is not the biomarker.

18:53

There are going to be tons of people with long COVID

18:55

who do not have low morning cortisol and

18:58

we don't want to have them get edged

19:00

out of a diagnosis of long COVID, which

19:02

is why we need to keep

19:04

doing the research that we're doing and keep pushing

19:06

forward.

19:10

Yet another study published just last month found

19:12

that long COVID was actually associated with

19:15

low levels of the neurotransmitter serotonin.

19:18

That was yet another lead for researchers to try

19:20

and chase down. But as Dr. Petrino

19:23

and others continue their research, I

19:25

guess the question is this, how do you

19:27

move forward when the world seems

19:30

to have moved on from some of these COVID concerns?

19:33

Frankly, it hasn't been worked

19:35

into the risk equation for most people.

19:37

Most people are thinking how do I avoid

19:40

acute COVID? And if you

19:42

get acute COVID, it's

19:44

very binary. Did I die? No.

19:46

Okay, well then I got through COVID

19:49

unscathed.

19:51

We'll be right back.

19:56

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Go.

20:13

And now back to Chasing Life and my conversation

20:15

with neuroscientist and long COVID researcher,

20:18

David Petrino.

20:23

Does it surprise you that people are not

20:25

more concerned about long COVID?

20:29

You know, I think it

20:31

doesn't surprise me because the

20:34

messaging around long COVID has been

20:36

not very unified.

20:39

You know, it's kind of presented as

20:42

there is this group of people who aren't really

20:44

recovering from COVID, but

20:47

it probably won't be you. And

20:49

so I think, you

20:51

know, one of the things that we always try to message

20:53

on is the idea that we have no idea

20:56

who is going to go on and get long COVID.

20:59

And now in 2023, our long COVID clinic is

21:02

getting swamped with people on

21:04

their third or fourth infection, and

21:06

they got through their first few infections

21:09

just fine, no worries. And this

21:11

is the one that got them and they

21:13

can't seem to recover. So we

21:17

advise caution, we advise infection

21:19

prevention using all the tools

21:21

in the tool belt. And,

21:24

you know, and I think that's the best advice

21:26

we can give.

21:28

You know, part of the reason I really wanted to do

21:30

this podcast was exactly what you said, the

21:32

unified message. And

21:34

I, you know, a lot of times for me, I sort

21:37

of liken it to I'm at a neighborhood

21:40

barbecue call it and you know, I'm talking

21:42

to my neighbors and my friends and you

21:45

know, and they may be asking sort of sort

21:47

of what is what is your level of concern,

21:49

for example, getting COVID and specifically

21:52

long COVID. If

21:54

you got asked that question, you want to give a unified

21:57

message. And again, these are your friends and your neighbors. This

21:59

isn't necessarily. your scientific audience

22:01

or whoever, what would you say?

22:04

You know, I tell people that I

22:07

wish that long COVID was being worked into

22:09

the risk equation that people

22:11

were making because it,

22:14

frankly, it hasn't been worked into

22:16

the risk equation for most people. Most

22:18

people are thinking how do I avoid acute

22:21

COVID? And if you get acute

22:23

COVID, you know, it's very

22:25

binary. Did I die? No. Okay.

22:28

Well, then I got through COVID

22:30

unscathed. So, you

22:32

know, I understand that lots of people

22:34

have really complicated situations.

22:37

Kids are going to school, kids

22:39

want to socialize, then you need to socialize

22:41

with the parents of the kids who want to socialize and

22:44

all of us are social creatures and we want

22:46

to socialize as well. So

22:48

typically my answer really

22:50

lands on I will feel

22:53

as though we're safe when we've made meaningful

22:56

progress on treating long COVID.

22:59

And if we all got together and focused

23:02

on that, the same way we

23:04

focused on rolling out vaccines

23:06

as quickly as humanly possible, we

23:09

could really make some progress in the next few years. There

23:11

are tons of drugs that we could be trialing

23:14

that we're not trialing due to lack of funds

23:16

and lack of interest. So, you

23:18

know, my message is always

23:22

fact along COVID in into your risk profile.

23:25

And if you can do something outdoors,

23:27

do it outdoors. If you can do something

23:29

and wear a mask, it's

23:32

not that disruptive to wear a mask

23:34

for most people. And

23:37

also just remembering that there are folks with

23:39

disabilities, there are folks who are already vulnerable,

23:42

who don't have that luxury of,

23:44

well, if I get COVID, it's not

23:47

such a big deal. So we need to protect

23:49

those folks while we're still foundering

23:52

on not having actionable

23:54

treatments.

23:56

To be clear, treatments for COVID in general

23:58

have come a long way since earliest days of

24:00

the pandemic. There's a lot we

24:02

can do to make sure people don't necessarily

24:05

have bad outcomes. It's especially true

24:07

when it comes to things like vaccines. Just

24:09

recently, the CDC and the FDA

24:11

cleared the way for updated vaccines that

24:14

are designed to combat variants that are currently

24:16

circulating. Now, you might commonly hear

24:18

them referred to as boosters, but you

24:21

can also think of these more like the annual flu

24:23

shot. There's likely going to be a new recipe,

24:25

so to speak, every year. And the data

24:27

is pretty clear. The vaccines go a

24:29

long way in reducing the risk of severe

24:32

disease. But what about long COVID?

24:35

Patrino says for long COVID patients, the calculus

24:37

around getting the updated vaccines, that's

24:40

a little bit more complicated.

24:42

We still recommend people get vaccinated

24:44

because it still demonstrably

24:47

decreases your risk of getting infected and getting

24:49

infected is much more dangerous and

24:52

much more of a risk factor for long

24:54

COVID. But we are

24:56

starting to become cautious around

24:58

folks with long COVID taking mRNA

25:01

vaccines because many

25:03

folks with long COVID show very

25:06

clear signs of viral persistence, meaning

25:08

that their body is unable to

25:11

clear the SARS-CoV-2

25:13

virus after an infection. So

25:16

the idea of

25:18

further injecting your body with mRNA

25:21

spike proteins, we do need to

25:24

have a rational conversation around

25:26

the fact that this may

25:29

not be good for people who already have circulating

25:31

spike proteins causing damage. That

25:34

doesn't mean that we're anti-vaccine, we're very pro-vaccine.

25:37

We acknowledge vaccines are

25:40

incredible tools for infection prevention, but

25:43

we also have to acknowledge that there is a whole body

25:45

of science emerging surrounding

25:48

these folks who have not been able to clear

25:50

the SARS-CoV-2 virus and

25:53

who very observably get

25:55

worse when they try and take a booster. And

25:58

so absolutely, we should. should

26:00

be understanding

26:03

the effect that mRNA vaccines can have

26:05

and trying to mitigate

26:08

some of that harm. I think

26:09

that's really an important message. I mean, I

26:11

think what people hear from

26:13

the CDC, and I guess this goes

26:15

to your unified message point, is

26:18

that people should still get the

26:20

boosters because it could decrease

26:24

the persistence of their long COVID symptoms.

26:28

That was one of their advisories, I

26:30

guess, several months ago. I

26:33

think for a lot of people listening who say, look, I may

26:36

have mild, not

26:39

dramatic, but mild long COVID symptoms,

26:42

boosters coming up now because it's the fall.

26:46

Should I get the booster or not?

26:49

And if you're at that barbecue talking to

26:51

Dr. Petrino, what does Dr. Petrino

26:53

say? This

26:56

is a fraught barbecue asking me

26:58

all sorts of questions. I don't

27:00

know if you get these questions

27:02

all the time. I do get these questions all the time.

27:07

It's a fair question. My

27:09

position on this tends to

27:12

look to history. At this point,

27:14

lots of people with long COVID have had

27:17

many boosters and

27:19

they know what their symptoms do

27:21

when they have a booster or not. The

27:25

first question I usually ask folks with long

27:27

COVID when they're asking, should I get a booster, is

27:30

have you had a booster before and did

27:32

it make your long COVID symptoms worse? I

27:35

usually get a very definite yes or no

27:38

to answer to that question. If

27:41

they say yes, my recommendation is, look,

27:44

take appropriate

27:46

precautions,

27:47

avoid situations

27:51

where you're at risk of infection.

27:55

I would say don't take yourself back with

27:57

a booster right now. If

28:00

they say no, then I say, well,

28:03

you know, a booster might

28:06

flee your symptoms, but getting COVID definitely

28:08

will flee your symptoms. So from

28:10

my perspective, I think it's just important

28:13

not to speak in absolutes because these

28:15

are complex problems. They're not simple,

28:18

settled science. We're learning

28:20

as we go and you can't boil

28:22

down a complicated message into 10 seconds.

28:26

We're also learning about who is most at risk

28:28

for long COVID. For example, studies

28:31

have shown that women have a higher risk of developing

28:33

long COVID than men, which Petrino says

28:36

is probably due to hormonal cycling

28:38

that women experience. He also says

28:40

there is a big concern when

28:42

it comes to children.

28:44

We've never really seen that

28:46

kids are immune from long COVID ever. We're

28:51

always noting in the epidemiological studies

28:54

that kids were seemingly

28:57

less likely to go on to develop

28:59

long COVID. But one of the things that I'd

29:01

say, you know, having run the clinic for

29:04

so long now is that

29:07

I would even question

29:09

that because, you know, many of the symptoms

29:11

of long COVID are just hard

29:14

to verbalize or vocalize for a child.

29:18

What's interesting is across

29:21

the board, the most common

29:23

symptom that parents come to

29:26

our clinic with when suspecting

29:28

long COVID in their kids is

29:31

a tummy ache, persistent

29:33

tummy ache. That seems to be, you know,

29:35

because we see a lot of GI

29:37

issues in long COVID and that seems to be the

29:39

thing that, you know, parents

29:42

notice that, you know, and then when you

29:44

start asking the parent, well, have you

29:46

noticed changes in energy? Do

29:48

they seem to be sleeping more? Are they a bit more fatigued

29:50

or are they a bit more emotionally labile

29:53

because they're, you know, because

29:55

they're so tired all the time. Do

29:57

they sort of run around and then?

30:00

crash, you know, then you start going

30:02

down the list and the parents like, yep, yep,

30:04

yep, that's all happening. And so

30:07

I definitely think we, it's been a

30:09

minimized area because we've wanted, you know,

30:12

everyone needs to go back to school, go back to life.

30:15

Don't worry, kids don't get affected. I don't

30:19

think that that's accurate.

30:20

What do you tell people who are listening to this

30:23

and say, look, I think that maybe I

30:25

have long COVID. I have

30:27

not been the same since my infection.

30:30

I'm, you know, have some

30:33

of the symptoms that Dr. Patino is describing.

30:35

What should they do?

30:36

The ideal thing to be able to do, and

30:39

I'm going to start with the ideal and then we'll move down.

30:41

But you know, the ideal thing is to try to

30:43

get yourself to a long COVID center with

30:46

clinicians that have experience treating

30:49

long COVID. Unfortunately, some of them are shutting

30:51

down, but there are still quite a

30:53

few long COVID centers that are open. If

30:56

that is not a possibility, then you know,

30:58

the next thing that I recommend is

31:01

to reach out to a physician and,

31:04

and show up armed with some

31:06

sort of written documentation of this

31:09

is what long COVID is. And so therefore

31:11

these are the things that I want tested,

31:14

you know, and I would say, I want

31:16

a full immune panel. I

31:18

want a full hormone panel. I want

31:22

to be tested for evidence of co-infection,

31:24

you know, reactivation of Epstein, bar virus,

31:27

herpes virus, et cetera. I

31:29

want to be tested for pots and disorder nomia,

31:32

because then at least providing

31:35

these cues to a physician that may

31:37

not have experience with long COVID. So

31:39

long as they're a trusted physician who in good

31:41

faith will run all the testing, then

31:44

as the abnormalities start to emerge,

31:46

we can treat those one at a time.

31:49

So, you know, at this stage,

31:51

my best advice is A, don't ignore it.

31:53

I would also say reach out

31:55

to communities, you know, the patient

31:57

led research collaborative is phenomenal.

32:00

all in pulling together lots

32:02

of patient voices. We've recently

32:04

been working with a

32:06

wonderful app called

32:08

Visible Health. They have

32:11

thousands of people with long COVID,

32:13

myalgic encephalomyelitis, in

32:16

their community doing daily

32:18

monitoring of symptoms and providing insights

32:20

on, hey, when my heart rate variability drops,

32:23

my fatigue is worse. Or,

32:25

you know, when this happens, I'm going

32:27

to have abdominal pain. And,

32:30

you know, this is really, truly,

32:33

you know, a community of folks with complex

32:35

chronic illness. So to

32:37

the extent that you can't gather expertise

32:40

from clinical care in your area,

32:43

next best thing or maybe even a better thing

32:45

is to reach out to the community and groups

32:47

like Visible that can provide

32:50

you with community-derived wisdom.

32:55

We're always trying to balance hope

32:59

and honesty. Honesty

33:01

should lead the way. But it doesn't

33:04

mean that there can't be hope. And hope,

33:06

I think, in and of itself has intrinsic value.

33:08

What would you tell somebody? I mean, should

33:11

they be optimistic, you know, that

33:14

they're not going to deal with us their entire lives?

33:17

Or what would you tell somebody? What

33:19

I tell my long COVID patients is

33:22

the same as I tell my folks with spinal

33:24

cord injury and stroke, which

33:25

is we're with you. We're

33:28

going to keep searching for

33:31

new interventions. And in the meantime,

33:33

I promise you that some

33:36

of the interventions that we already have to offer will

33:38

at least make you feel a little better. So

33:41

we're going to start there, small progress,

33:44

and we're going to shoot for big progress. And I'm not

33:47

going to give up. My team's not going to give up. You

33:49

know, my goal is always to have

33:52

one more thing that someone can try

33:54

that they haven't tried before.

33:56

Through that process,

33:58

we haven't run out of ideas yet. We've

34:00

got more ideas than we've got time

34:02

or bandwidth trial and so I think

34:05

that the future is hopeful.

34:12

I actually think depression evolved

34:14

as a way of helping us cope with adversity

34:17

even though it's very painful. I don't endorse

34:19

depression as a good thing but I actually think

34:21

that it is part of our deepest human

34:23

inheritance. It's this capacity to get depressed.

34:27

That's next time. Thanks for listening.

34:29

Thanks for listening.

34:36

Thanks

35:00

to Ben Tinker, Amanda Sealy, and

35:02

Nadia Kunang of CNN Health.

35:30

Thanks for watching. See you next time. Bye.