If you've been on the internet for the last 10 years, you know Dianna cowern.
She's Physics Girl, an amazingly talented science educator, an empathetic and authentic
person and also my friend.
These days, her videos look different.
because dianna cowern has Long COVID, a condition that didn't even exist a few years ago.
And so when I saw these videos that her team and her friends were putting out, I thought,
what can I do here?
For some people, they share her Patreon, they post on Insta about her struggles.
But for me, it's this.
I make videos about questions that I have.
So I emailed her team.
And with their consent, I made this video.
what is Long COVID?
what is ME/CFS?
What is post-exertional malaise?
What is happening to my friend?
Will we ever have a cure?
Let's kick into it.
[MUSIC PLAYING]
Long COVID is a brand new disease.
It's only a few years old.
without covid, you don't have Long COVID.
and it happens to people who get COVID-19
and then have these post-COVID symptoms for weeks,
or months, or longer.
that's Long COVID.
between 10% and 30% of people who get COVID-19
may develop Long COVID.
Long COVID has tons of symptoms, ranging from fatigue,
or cough, to trouble thinking, even just pain.
These are the most common.
Some people experience all of these symptoms,
and some will only experience one or two.
Clearly, there's a lot to unpack here.
So to find out what's happening, if there's anything
we can do at all, I called Dr. Ziyad Al-Aly,
one of the top us experts on ME/CFS and long covid,
which he studies every day.
- so my friend Dianna, she's bedridden, she's exhausted,
she crashes after the smallest of activities.
She's been to the ER multiple times.
She says she has to keep her eyes closed most of the day
and she can't be on her phone 'cause it tires her out.
- a lot of people with Long COVID have brain fog,
a lot of them have fatigue,
a lot of them have dysautonomia, et cetera, et cetera.
But it's not only that,
it's really Long COVID is much, much more than that.
There are a lot of people with heart problems, kidney
problems, diabetes, high cholesterol.
So those are really the long-term health effects
of SARS-CoV-2 infection, spanning really
a broad array of organ systems, nearly every organ
in the body.
And it shows a similarity to another known condition called
ME/CFS, myalgic encephalomyelitis chronic fatigue
syndrome. The nice thing about medical words
is they literally tell you what's going on just
by reading them.
Myalgic, which is pain in a muscle group or muscles.
Encephalomyelitis is the inflammation
of the brain or spinal tissue.
Chronic, which means it's not just once.
It's repeated, consistent, persistent.
Fatigue is not like sleepy.
It's more like running a long race.
You're exhausted.
You're out of battery.
And syndrome.
Syndromes are not always recognized as diseases,
because diseases typically have a known singular clause.
COVID-19, the virus causes it.
Syndromes, we don't know always what causes them.
according to a 2019 nih report on ME/CFS,
There can be difficulty with concentration and short-term memory, but also something
called orthostatic intolerance, which is like not physically being able to sit up for treatment.
Not that there is treatment available right now anyway.
Long COVID comes from covid-19, of course.
ME/CFS has existed for decades, and it may come from a variety of different infections.
We're not entirely sure.
But are they the same thing?
because we don't fully understand Long COVID yet, and because we don't fully understand
in ME/CFS, it's very hard to pinpoint sort of distinctions between the two.
There's a lot of overlap in the symptomatology, in the symptoms and the clinical presentations
and the phenotype, if you will, between ME/CFS or chronic fatigue syndrome and long covid.
Long COVID had this event, this infection that they just couldn't ignore.
ME/CFS is also thought to be triggered by infection, but there wasn't this global
pandemic affecting millions all at once.
But it was harder to pin down what infection might have caused it.
and it doesn't help that ME/CFS comes with this one-two punch of post-exertional malaise
or PEM.
and this is what's happening with people like Dianna.
This is when doing anything, even a simple task like getting out of bed to boil water
for pasta or checking your email, causes the body to need a ridiculously huge amount of
rest.
This isn't like depression where the motivation isn't there and it's something inside of you.
This is physically exhausting, and resting might not help.
You could still be exhausted hours after being in bed.
Symptoms can appear 12 hours or 2 days after the physical or mental activity that triggered
them. Yeah, mental activity.
Again, checking your email, reading texts.
This can cause PEM to flare up.
Imagine if just reading about your disorder or listening to a doctor could knock you out
for days.
now with long covid resembling ME/CFS, and there being so much overlap, it's hard to
deny, something's up.
we don't know why do some people get COVID-19 and after that they get, you know, this profound
fatigue, post-exertional malaise, brain fog, and muscle pain, you know, being tired, exhausted.
And some people, you know, emerge from it unscathed.
It could be genetic predisposition, it could be environmental factors that play a role,
that could be the initial acuity of the infection, how their body and their immune system dealt
with the infection, their body did not clear the virus completely.
800,000 to 2.5 million people may have ME/CFS in the united states, and there are more of
them now, assuming of course that there's a big overlap with Long COVID.
Studies over the last 35 years since the 1990s have found abnormalities in so many different
systems that it's actually hard to get diagnosed with ME/CFS.
Not just because it affects so much, but also because doctors don't believe people have
it. Doctors thought it was psychosomatic. It was all in your head. And that attitude
is still around today, even with millions of people affected.
I would argue that those two conditions are absolutely real. I feel that ME/ECFS has been
underfunded and understudied and under-evaluated and patients were not really taken seriously.
We ignored the post-viral condition for more than 100 years. So we under-invested in that
and then we got caught unprepared with Long COVID. if we had paid attention to the me/ecfs
immunity, we would be definitely in a much, much better place now than we are.
the overlap between long covid and ME/CFS has helped research into both.
in the biggest study that i could find, the main concern was do participants have ME/CFS
or not?
How do we know if we don't know what the root cause is?
And they were super picky about who could join the study.
Possible patients had a "two-plus week stay" at an NIH facility.
They were subjected to exercise studies, mitochondrial assessments,
metabolic chambers, immune assessments,
brain scans, muscle biopsies, spinal fluid draws.
This is like House MD up in here.
The study's not published yet, but it's going through peer review, and once it gets
out it will hopefully help the ME/CFS and long covid communities.
It's hard to deny these things exist once there's a quote unquote "real study"
about them.
And the overlap does mean that there might be money for research into both, which is
good, which means maybe we'll get a treatment for both.
the list of fda approved treatments for Long COVID is zero.
there is millions and millions of people with Long COVID.
This is not one or two.
That is literally depending on which statistics you use,
there are like 14 million, 20 million, 26 million people,
millions of people in the us alone with Long COVID,
millions of people who are suffering from Long COVID.
the main, main, main issue with Long COVID,
we need to know how to treat it.
It's sort of like plumbing.
We can soak up the leak.
We can catch it in a bucket.
We can replace the water damaged stuff,
but we can't stop the flood because we can't find the leak.
but there are some guesses as to where ME/CFS and long covid
comes from.
Studies are using Paxlovid to eliminate
leftover viruses in the body.
That could be one cause.
Studies are exploring blood thinners and anticoagulants
in case microclots are reducing blood and oxygen flow.
And of course, there's treating the symptoms of the disease.
someone like Dianna, who has a racing heart,
We have something for that, beta blockers.
If someone has muscle pain, we have something for that.
A lot of doctors specialize in just one thing, though--
feet, eyes, brains, guts, your nose and throat,
overachievers.
Funding to study things are typically
split to accommodate those specialities.
Brain doctors don't usually collaborate with lung doctors,
but with this, they have to.
long covid and ME/CFS are multi-system syndromes.
Before 2019, there was no single research group
to tackle Long COVID because it didn't exist.
But that's not the case anymore.
Experts in Alzheimer's, in infection, neurologists,
nephrologists, so many doctors are all focused on this.
But it takes time.
We really cannot afford for things like, oh, yeah,
I'm going to do a trial and get you the answer in 10 years.
We need to keep looking for things that work
to try to systematically search our list of candidate drugs
to figure out or discover which ones really work
and which ones don't work.
So if we can only work on symptoms, what about PEM?
How do you treat exhaustion?
For that, it's called pacing.
It's lifestyle change.
Basically, you plan your day knowing your budget of energy,
like the stamina gauge in "Zelda, Breath of the Wild."
You have to stay within your limits or you fall off a cliff.
[SCREAMING]
Weirdly, pace is what we called how to time out a meal when
I worked at Olive Garden.
You know, it's the starter, and then a little break,
and then the main, and a little break, and maybe dessert,
and you bring the breadsticks and the salad in between,
You have to leave some more gaps,
but you don't want too much time between.
But you have to think about the entire thing
right as they're sitting down.
And think of it that way, just with fewer breadsticks.
When you wake up, going to the store
might be a big activity.
So you have to build in space in your schedule
in order to crash later.
And everyone with PEM has to find their own limits,
called their energy envelope.
And it's hard.
And I feel for people who experience this.
my friend Dianna has it, but so does my friend anthony.
And there are meds for some of these things,
and holistic methods as well, like physical massage
and rehab and soaking in tubs.
And the CDC even recommends acupuncture as an option.
And all of this can create other difficulties
that impacts your mental health,
things like depression and anxiety and stress.
so the best option to not get long covid in ME/CFS,
if you can, is to avoid COVID altogether.
- People need to understand that
if you've dodged a bullet once,
if you've got COVID the first time,
and you've dodged a bullet once,
it does not necessarily mean you're gonna dodge the bullet
every single time.
If you get reinfected again,
you're pretty much trying your luck again.
You're trying that Russian roulette again.
- It is so hard to watch this happen to your friends.
And that feeling is something that millions of people
are experiencing all over the world.
Will our family or our friends or our partners get better?
Will they recover?
Nobody knows.
'cause Long COVID can last for weeks or months.
A CNN reporter got it in 2020 and is still affected.
She thought she would never be rid of it.
At one point, she even contemplated suicide
because she felt trapped in a body that
wouldn't cooperate anymore.
Eventually, she did get better, but it's not guaranteed.
And she doesn't think she's back to what she was before.
I think we can all identify with this idea
that you're not believed by doctors.
I have ADHD.
They used to think that wasn't real.
They thought we were faking or that our parents
had messed us up somehow.
Now we know better.
There's something else going on.
and one day, i hope we know better about ME/CFS
than Long COVID too.
I hope we can accept that they're real
and that these humans need our help.
There are several studies coming out.
recover Long COVID is happening now.
there are new nih studies of Long COVID coming out too.
that tough to get into study from 2016 on ME/CFS
is almost publishing.
and dr. whittemore, an ME/CFS intramural study fellow,
said that they're very close to submitting their publication,
and they're going to get multiple papers out of it.
But medical journals, they don't work very fast.
And people are arguing that they should release their papers
before peer review.
That's called a preprint, but that can affect then
if the paper gets picked up by a major journal.
And if it's not in a major journal, it's not as trusted.
And if it's not peer reviewed, it's also not as trusted.
- But I can tell you from my perspective,
I'm deeply committed to this, you know,
I definitely want to see progress in this area
and I want to continue to fight on all cylinders
to move the ball forward.
That's really needs to happen.
and the patients with Long COVID deserve nothing less.
We need to make sure that we're, you know,
moving the ball forward and especially
not only understanding Long COVID, but really solving it,
really truly meaningfully solving it for them.
You know, prevention strategies and treatment strategies.
- Something that you can do right now.
Dianna has a patreon.
You can help her there.
The link's in the description.
Kyle is doing a lot for her, but it's hard.
Her Patreon will directly support them.
another way to help her and other patients with ME/CFS
is to one, believe the patients, validate them.
It's literally written that way
in one of the papers I read.
They're telling doctors to validate their patients,
because so many don't believe it.
two, find an org that's helping with ME/CFS.
There are so many.
Here are some on the screen.
And you can pick one of these or find one
in your region or your country.
There are tons, and you can support them,
and you'll get more research funding.
Three, learn about it.
Remember when Michael J. Fox announced he had Parkinson's?
It made people learn about it.
They recognized it, and they supported the research.
This is the same.
Participate.
Be vocal.
Dianna and anthony would want you to.
I learned a lot from this video.
I hope that you did too.
Thanks so much for watching.
Keep our friends and our family members in your thoughts.
Support them.
Validate them.
And I'll see you in the future.