Imagine this:
You wake up in the morning,
pour yourself a hot cup of coffee
and start frying some eggs.
But something's off.
You don't smell the earthy aroma of coffee or the buttery eggs.
Instead, you smell cigarette smoke, sewage or rotting garbage.
People who've gotten COVID-19 haven't just been losing
their sense of smell and taste.
A subset of them have been smelling
and tasting the wrong things.
Like really, really wrong.
Even after they recover from the virus,
Everything kind of started smelling the same with the scent of
Smells like something burning and rotten all at the same time.
And for some people, the distorted smells aren't going away.
You know, doctors have said there's a chance that this might never come back.
It's known as the "COVID smell," or as scientists call it,
"parosmia,"
a condition that distorts your sense of smell.
One international study suggests it could be affecting about 7 percent
of COVID survivors.
Other studies have even higher estimates.
What this means is
parosmia could be affecting millions of people around the world.
Hi, I'm Yara, and I know:
This is a show that has to do with how food
intersects with our society.
But our sense of smell is a huge part of how we taste things.
So now we're going to take our nose clips off.
[laughter]
Oh, my God, that's crazy.
Without my sense of smell. I couldn't even sense what that was.
In other words, a lot of stuff just isn't tasteable
— well — without our noses.
So when something happens to this,
it inevitably impacts this.
And for folks who have parosmia, it can have serious consequences.
We've had patients ask us
if there's a surgery we can do to just cut the nerve to their smell
so they can at least not smell anything
because they're like, "I'm suicidal."
There has been some times where I try to make dinner, and I just break down crying.
I feel so alone.
I feel like no one can understand me.
It's almost like a disability.
I don't know why this is happening. I don't know how to fix it.
I don't know how long it's going to last.
This is the rest of my life?
This is awful.
So I wanted to find out how on earth COVID is doing this to people
and what life is like
when you smell, and taste, all the wrong things with no end in sight.
We're studying these things really very aggressively, and we're really trying
to get some answers to people. They deserve answers.
So what's it really like when your sense of smell and taste have gone haywire?
This is like my happy place. You know,
have your cup of coffee and, and just enjoy that,
but, ew, it just doesn't — it doesn't smell... normal.
We met up with Kim Minton.
She's been dealing with parosmia
for four months and counting
after contracting COVID in late 2020.
It was crazy. I didn't know I had COVID
and, all of a sudden, I went to grab some lemonade, and it tasted like nothing.
Absolutely nothing.
So you lost your sense of taste and smell?
Yep.
What happened after that?
So about a week later,
I was hopeful that I was going to have
some kind of taste or smell or something.
It was just nothingness.
And what happened was
everything tasted as if someone was smoking right around me.
I couldn't stand it.
There was no burning,
there was no cooking, it was just the smell of cigarette smoke?
Yes.
24/7.
And you're not a smoker, you told me.
Absolutely not.
So that went on for about a month.
I started to research a ton, and I found this group on Facebook,
and I realized that I was not the only person.
Do you want me to just like, chop these up? OK.
Sure.
I need to get oil.
Yeah.
So, see, it's getting warm, and it's starting to smell really nasty.
Ugh, I'm smelling rotten
garbage.
Rotten garbage from just that little bit of oil?
— Oh my gosh, absolutely disgusting.
It's so foreign.
Pineapple tastes like a cleaning solution.
Chips and potatoes.
It tastes...
rancid.
Chicken, sometimes, if it's prepared a certain way.
I get a terrible taste in my mouth
that's like rotting garbage.
Bad onion rotting in a basket.
That is what things smell like to me.
Onions are usually very pungent,
so I'm curious to see what you might be smelling —
— Onions are pungent,
but as much as I smell onion, I don't smell an onion.
You smell rotting onion from other things —
— Constantly. —
— but not from onion.
— But not from that.
Nothing.
Zero.
Nothing.
Wow.
But everything smells like onions!
That's crazy.
Bad onions!
Yeah.
Everyday I think,
"Maybe tomorrow's the day
that I'll be able to have something back."
Because I've heard
that it can come back as quickly as it left,
but I'm not real sure about that.
But how exactly is COVID doing this to our noses
and to our brains?
We headed to Philadelphia to visit the Monell Center,
one of the country's leading research institutes
focused on the science of smell and taste.
And, yes,
it just so happens to have a giant golden nose statue right outside of it.
Anyway, we're here to talk to Dr. Danielle Reed.
She's been studying the science of smell —
— for over 30 years.
Ahh, OK.
How is it that COVID is causing parosmia?
So here's how smell works. So,
basically, if you go all the way in up your nose
and you keep going and going and going,
at the very roof of your nose, there's a little patch of cells.
And those are your olfactory receptor neurons.
Basically smell cells right here in your nose.
And those smell cells have a very special mission,
which is to be monitoring for all the things that are in the environment
and send signals to the brain when they encounter
something that has an odor.
So let's say there's an odor right here in front of me or something
like a peach or an apricot or something.
It smells a certain way. It's giving off
chemicals or something?
Yeah, we would call those "volatiles."
So, the peach volatiles are in the air
and then you pull the odorant up into the nose, and you
[sniffing]
You sniff so that it goes all the way up high.
And then that volatile touches the cells in the nose,
and that causes the receptor to get excited
and send the signal to the brain.
So that's how you smell.
And so some of these volatiles go up what we call "the back way."
And so a lot of the beauty of eating
comes when we have those volatiles in our mouth.
So if you lose your sense of smell or it's in some way diminished,
you're also in some way also experiencing diminished taste.
Right, so people often use the word "taste" in a very general way.
So scientists — what we mean when we say "taste"
are the signals that come from the tongue:
sour, sweet, salty, bitter and umami.
That's that savory taste.
And then what happens in the nose is smell.
But often when people are talking about the general taste,
what they really mean is flavor.
Flavor is the marriage between taste and smell.
Because our taste and our smell become integrated in our brain,
and that's what we care about as — as eaters.
Let's do a little demonstration to show you the importance, OK.
So what we're going to do is we're going to put our nose clips on.
Wow, it's very fashionable.
Yes, it's a good look.
It's definitely a good look.
[laughter]
OK.
So we're going to take this jelly bean, and we're gonna
chew it up in our mouths
and we're going to try to guess what flavor it is.
We've eliminated our sense of smell now,
so this is just the taste receptors in my mouth.
OK.
So I'm getting a little sweet.
Yeah, I just taste like...
...sugar. Like sugary gum.
Right, so now we're going to take our nose clips off.
Oh, this is banana!
[laughter]
Oh, my God. That's crazy!
Bingo. It's banana.
Without, like, without my sense of smell...
Right.
...I couldn't even sense what that was.
You're going to get something without a sense of smell.
You'll get a sweet, you'll get a salty, you'll get an umami.
Right, but you're not going to have a meal.
Right, because what you just saw was the meal is the beautiful flavors,
and the volatiles and your brain putting it together.
You had the "Aha, it's banana."
So let's kind of shift gears now to
what COVID is doing to our noses and to our brains.
Obviously it's new for everybody, including scientists,
but here's what we know now about what happens.
The virus doesn't affect the nose cells directly,
but there are cells that are in the nose that sort of support the nose cells,
they give them nourishment.
The virus gets into those nourishing cells and infects those cells.
And we think that those cells then secrete an alarm signal.
And that alarm causes the — the smell cells
to stop making all of the things it needs to make to have a sense of smell.
Basically, COVID throws a switch and turns the receptors off.
So that's the...
That's complete absence of smell.
Receptors go off. You can't smell anything.
Now, what happens, we think, with parosmia, is as
the receptors are coming back, they don't come back on uniformly and correctly.
Some come back well, some are poorly.
And the sense of smell is not quite right.
Is it just something that's happening in our nose, or is it
the wiring of our brain also that's sort of changing?
So that's the other component of this.
The nose cells has to talk to the brain.
And we think that maybe in that rewiring process —
so when the lights come back on and the rewiring to the brain starts,
it's not quite right,
it's rewiring the wrong smell receptor to the wrong part of the brain.
Parosmia isn't something that's new.
It's been around for a while.
Things would cause parosmia in the past.
I know I've read about cancer, chemotherapy, brain lesions.
So this is a very old thing.
It was just a very uncommon thing.
And what's changed is it's much more common now.
So many more people have parosmia with COVID.
So we want to be able to do the research that makes people get better.
And a key part of that research
is collecting data on how people perceive both taste and smell.
But how do you measure that?
Well, one answer is the Monell Flavor Quiz.
A little box of smellable, and tasteable, substances.
So how exactly would folks with parosmia do on this flavor quiz?
We invited Kim and a couple other people dealing with the condition
to come down to the Monell Center and give it a shot.
So that's Kim.
Hello.
Boom.
[laughter]
This is Sakeenah.
Oh hi, hello.
Uh, oh.
There we go.
And that's Joe.
Oh, hey!
Yeah, sweet, nice to see you.
Oh, and that's Mackenzie.
She's a researcher who works on the Monell Flavor Quiz.
So, um...
I believe we're all vaccinated
— two weeks out from our last vaccination —
so if it's OK...
Da-da-da-daah.
Yes, so you guys all have a nifty little box,
and in it is something that we've designed here at Monell
that allows us to really characterize people's ability to taste and smell.
So what's cool about this test is
there aren't any tests on the market that do exactly what this does.
Often you'll just have a smell test or just a taste test.
But here we get the whole shebang,
because when you perceive flavor,
you perceive both smell and taste at the same time.
So, yeah, I guess do we — shall we —
Yes. So you can see that there are six smells up at the beginning.
So you can go ahead and select the first vial.
So with me as the control —
— in other words, the person without parosmia —
we smelled six different things.
Ooh!
Oh.
Oh, wow.
[heavy breathing]
[coughing] Wow.
And tasted six different things.
Ugh.
Oh.
Oh, I thi — Ohh, yeah, yeah, yeah.
Freshness.
Some of the tastes caught us off guard.
[coughing and laughing]
[coughing]
That's hot.
Spicy.
I can't taste anything, but I can feel the heat.
So it's capsaicin, which is the spicy compound that you'll find in red peppers.
But where things really got interesting was our sense of smell.
There were some major differences.
A childhood memory, linoleum cleaner.
Is this fish?
Mm-hmm.
OK.
It smells like garbage to me.
Maybe like a cat pee at the beginning there, too, I don't know.
Yeah, oh.
That's what you smell —
You smell cat pee.
I did get that yeah.
[slo-mo] Cat pee.
I mean, at certain points, we were smelling
completely different things.
Kind of like uh qu —
— Is it... gum?
Like a spearmint?
Oh, yeah.
Mm-hmm.
OK, I got propane.
Whoa, propane.
Joe?
It's not mint.
I don't know what it is, but it's not mint.
Whatever I'm smelling, it's not good.
That's parosmia at its finest.
And one smell in particular was unbearable to everyone but me.
I don't like this at all.
It smells like bad onions.
This is the smell that I have in my taste in my mouth all the time.
I don't cook with this anymore.
It's onion powder.
OK.
It's something that I used to know.
Can I ask you guys, is this the first time
you're all meeting another person with parosmia in person?
Actually, for me, yes.
I've met people that can't taste anything
but this whole change in — the distortion.
Yeah.
I think I may have met some people
who were like, "Yeah, I lost my taste for a little bit, but I got it back."
Nobody like me who's like, suffered this long.
I think the distortion — it's
— I think it started on my cousin's bachelor party in like, June.
You've had parosmia for one year.
Well, no. June, right?
June of — It's June again.
These tastes and smells and sensations
— it's so hard to convey to people
because you can't put your finger on what it tastes like. It's just bad.
I've put hot sauce on things to give them flavor.
Yeah. Oh yeah.
Same. Yeah.
Did you used to do that before?
Rarely.
If it's chicken, for instance, it has to have like some type of —
— Something!
— spice to like cover up,
whatever, like, rotten smell that is.
Nothing fixes it for me.
What do you live on, Joe?
Oh my God. It is — it's...
dwindling. Like, less and less stuff every day.
It's bread, cheese, certain sweet stuff, like ice cream.
For the three of you,
what would you say is the hardest part of having parosmia?
Like trying to figure out what you want to eat at night? It's just like,
"Whatever, I won't eat."
I want to know, when is this coming back? When is somebody going to figure this out?
It's like my entire life was — is not in color anymore.
I keep comparing it to like a light switch and it's like,
"Someone please turn on the light."
So coming here today and meeting you guys, it was like,
just reminding myself, "You're not alone in this."
With an increasing number of patients,
how are people coping with parosmia?
And how are doctors helping those patients?
We headed to New York to speak to a doctor and researcher
working on one of the largest studies of COVID-induced parosmia to date,
with hundreds of patients.
What are you hearing from them?
Well, we're finding that all have significant quality-of-life issues
that are actually worse than patients with just regular loss of smell.
You can see them just suffering.
They're in tears half the time.
They'd rather smell nothing than smell terrible, rancid meat all the time.
And we know through prior trials and prior evidence that any patients
with a change in smell will have increased rates of anxiety and depression.
You actually have a nice recording here of all the different smells
and how frequently you encounter them in the patients.
So what smells are very common?
The most common is a chemical kind of type smell.
Cigarette smells, gasoline smells are also pretty common.
Definitely heard the cigarette one.
Yeah.
Patients have significant weight loss,
nausea, inability to eat.
We have patients that are vomiting after they smell anything or certain triggers.
You know, there's a huge spectrum.
So you mentioned that kind of the psychological toll
it's taking on people is a huge component of your research?
Yeah.
What are among the most common kind of negative statements you're getting from people?
You know, the the senses of isolation, how it affects their eating
are some of the most common ones.
You know, when looking at COVID,
what worries us the most I think though is these
kind of long-haul symptoms, loss of sense of smell and taste, parosmia,
depression, anxiety, hearing loss, chronic pain, headaches.
We're about a year,
a year and a half, into this experience, we don't have great prognostic evidence
to tell them, you know,
this will go away in one month, two months, a year, if ever.
You know, we're still in this very early period of understanding,
um, how COVID affects the sense of smell.
And it may not be in the nerve, it may be deeper in the brain.
We don't know.
So is there a way to fully cure parosmia?
As of yet, there isn't.
A lot of people have fully regained their normal sense of smell
after a period of time.
But many, many others haven't.
I'm about almost a year with my parosmia.
I guess it'll make a year now.
Maybe this is what my life is gonna be like forever,
because it's almost a year and I haven't fully gotten it back.
Leading doctors throughout the country are trying a variety of techniques,
from nasal steroids, to fish oil supplements, to smell training.
In other words, smelling
very strong scents on a daily basis to reawaken your smell receptors.
Now, there is some research that shows some of these techniques
can have a modest impact in recovering some patients' sense of smell.
But the key words there are "modest" and "some."
None of them can fully fix parosmia, so to speak.
And that's, I guess, one of the lasting imprints COVID has left on our planet.
Long-haul symptoms that just aren't going away.
Parosmia is just one of them.
And what do you want people in this country, around the world
to know about parosmia?
It's not a joke, it's not a game.
We're not making this up.
Be grateful, and be thankful of everything you are eating right now.
Be appreciative and grateful for everything that you have 'cause,
just like that, something like this can happen.
Having five senses when you're born, and then losing two of them is like, unreal.
Unreal.
Get vaccinated.
[laughter]
Umm,
You don't want this.
You don't realize how much taste and smell
is meaningful until you have it taken away.