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Most people who have COVID-19 recover completely within a few weeks. But some people — even those who had mild versions of the disease — continue to experience symptoms after their initial recovery.
Sometimes called “long haulers” or “long COVID,” these patients can have fatigue, shortness of breath, brain fog and other symptoms long after the time of their infection.
Post-COVID-19 syndrome conditions are generally considered to be effects of COVID-19 that persist for more than four weeks after you’ve been diagnosed with COVID-19 infection.
A recent Mayo Clinic study on post-COVID-19 symptoms found that more women than men suffer long-term effects. Women predominantly showed symptoms of fatigue, followed by muscle pain and low blood pressure, while men primarily experienced shortness of breath.
Research is also underway to better understand what may be causing post-COVID-19 syndrome.
“We do have some research now that shows that some of the cells that are used to create immunity after an infection, they may be malfunctioning in this condition in patients with long-haul COVID,” says Dr. Greg Vanichkachorn, director of Mayo Clinic’s COVID Activity Rehabilitation Program. “We also now have some research that shows that patients with this condition can have antibodies against themselves, otherwise known as an auto-antibody. And this may be associated with the long-haul COVID state, so immune dysfunction and auto immunity, they may be at play here.”
The COVID Activity Rehabilitation Program at Mayo Clinic helps people experiencing post-COVID-19 syndrome by working with patients to decrease symptoms and improve overall functioning and quality of life.
Guest: Greg Vanichkachorn, MD, MPH
Host: Halena M. Gazelka, MD
| Published:
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Infectious Disease Subspecialty
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Past Notes
Coming up on Mayo Clinic Q&A,
most people who have COVID 19
recover completely in a few weeks,
but some people may have symptoms of
the disease long after their initial
recovery.
These people are described as long
haulers.
Unfortunately, we still have
patients who are now suffering
more than a year and a half out from
their infection.
Initially, it's thought everybody
and I will say that most of those
patients they are doing better for
the recovery process is so
slow.
So the long October name doesn't
really seem appropriate,
unfortunately,
on this Mayo Clinic Q&A.
We'll explore the treatments and the
research being done to slow
down the effects of long COVID.
I think with this impact
that we're seeing from long haul
COVID, there's going to be more
emphasis on getting this kind of
research done and frankly, more
funding.
I think once we have that, they will
be able to develop things like a
diagnostic test and then
also have more definitive treatments
other than a slow recovery.
Welcome everyone to Mayo Clinic Q&A.
I'm Dr. Helene Gazelka.
While most people with COVID 19
recover completely.
There are others who struggle to
return to complete health after the
virus.
Sometimes these are called long
haulers or long COVID.
These patients can have fatigue,
shortness of breath, brain fog
and other symptoms long after the
time of their infection.
Here, to help us better understand
long COVID is the director Mayo
Clinic's Kovic Activity
Rehabilitation Program Dr.
Greg with an education.
Welcome back to the program, Greg.
Thanks again for having me.
It's good to good to be back.
Well, I'm so happy to have you back
because we haven't really talked
about this in a long time.
And in terms of COVID, it's
been about forever as far as
research keeps coming along.
So I'm excited for you to give us
some updates.
Absolutely.
And let's start with what is
the right thing to call this.
We hear it called long COVID
or long haulers syndrome.
What's appropriate term?
Yeah, that's a that's a great
question, and it sort of shows
an insight about where we are still
with the research in this area.
Even though it's been about a
year and a half since our team first
started working with patients with
long haul COVID, we
still don't have a name that we can
all agree upon across the world.
Some people call it long haul COVID.
Others call it post-acute the
quality of SARS-CoV-2, which
is quite a mouthful, and we tend
to use post-COVID syndrome here.
But as right now, there
just is no agreed upon name
on this condition.
All right. So I was worried that I
was calling it the wrong thing, but
I
guess they all fit.
Yeah, I think we just
need to get together.
But can you tell us who is?
Do you know yet?
Who is susceptible to this?
Who is most likely to have
long COVID syndrome or post-COVID
syndrome?
Well, we see two different buckets
if individuals have a very severe
acute infection, and these are
the kind of folks that ended up in
the hospital or maybe even in the
ICU if they have
long haul COVID after that,
they tend to have more severe
symptoms.
And this makes sense because we
already know that patients coming
out of the ICU for whatever
medical condition can have a really
long road of recovery after
that.
But on top of that, it seems
like pretty much anybody else can
get this condition as well, too.
In fact, most of the patients that
we've seen here in our program,
75 percent were not
hospitalized as part of their acute
infection. In fact, many of them
just didn't get any medical care at
all. They were able to take care of
themselves at home.
We also have not found any
relationship with pre-existing
health conditions like asthma
or high blood pressure,
no relationship to depression or
anxiety or fibromyalgia
or chronic fatigue.
I will say that the patient
population that we see in this age,
this condition tends to
be younger than the patient
population that we associate with
severe acute infections.
The average age is about forty five
point four in our patient
population.
And for whatever reason,
we tend to see more females,
the males.
Sixty eight percent of our patient
population has been female, and this
is a finding that's been reproduced
in other studies, including
another recent study that came out
here at MeOH just this past
month.
More remains to be determined about
what is leading to that.
But other than that, it really is a
condition that anybody can get
interesting what causes it.
And this is another good question.
Remember, most of the research right
now is one trying to figure out
what's the best name for this and
also how this condition presents
across different socioeconomic
groups and patient populations.
But that being said, there has been
some scratching on the surface
about what could be causing this
condition on a chemical level, on
a biochemical level.
So, for example, we do have some
research now that shows that
some of the cells that are used to
create immunity after an infection,
they may be malfunctioning
in this condition in patients with
long haul COVID.
We also now have the research that
shows that patients with this
condition can have antibodies
against themselves, otherwise
known as the El Autoantibody,
and this may be associated with
the long haul COVID status or
immune dysfunction and autoimmunity.
They may be at play here.
We also now have some information
saying that the neurological system
may be more impacted by
the acute infection than we
previously thought.
Now these are all just initial
research studies, and a lot is left
to be done in this area.
But there does seem to be a
biological plausibility centering
on the neurological system and the
immune system that causes
this long condition.
Very interesting.
Greg, do you know if there's
preventative measures that can be
used while the person is ill with
COVID, such as monoclonal antibodies
that help prevent this?
This is a question that we get quite
a bit, and we've had a couple of
patients receive monoclonal antibody
and then go on to get long haul
COVID.
So as promising as it sounds, we
have not seen that be associated
with improved outcomes
and prevention of long haul COVID.
That being said, it is an area that
I'm really interested to see as part
of future research when it comes to
treatments.
I will say that patients these
days, they're coming in to be seen
sooner than later.
Early in the pandemic, patients were
arriving three to four months out
after their infection because they
weren't certain what they were going
through and getting care was
difficult.
But now, as this condition is more
recognized and more programs are
available, we're starting to see
patients three to four weeks out
from their infection.
And if these patients do get long
haul COVID, I will say that their
courses tend to be less severe
than what we have seen in the past,
and they're getting better, faster
now. It kind of begs the question,
is it the fact that we're seeing
them earlier that's making them
get better, faster or the fact
that a lot of these people have been
vaccinated too early
to determine? But in any case, I do
recommend that patients get care
sooner than later.
How long does it last?
Typically, you know, this
is the age old question for
something called long haul COVID.
It's now more than a year and a half
out from the start of this
condition, really.
And unfortunately, we still have
patients who are now suffering
more than a year and a half out from
their infection initially.
It's thought everybody and I will
say that most of those patients,
they are doing better with the
recovery process is so
slow.
So the long haul COVID name does
really seem appropriate,
unfortunately.
Greg and our patient from
Mayo Clinic Connect there have been
talk about loss of
employment due to long haul COVID.
Have you seen this concern with
your patients?
Work has always been something
that's been a focus of us here
in the Caap clinic, being an
occupational medicine clinic,
primarily because we always
ask about work abilities
and try to get patients back to
their job. And unfortunately,
that is not always possible
because of the prolonged nature of
the recovery process.
Many employers just can't wait
unfortunately forever for these
patients to get better.
So yes, we have seen quite a few
individuals who have not been able
to get back to their normal work
or been out of work completely and
lost their job.
Well, that's that's difficult
given how do you treat
this? What is your program like for
individuals who have long haul
COVID?
But one of the first things that we
do for patients in this is making
sure that nothing else is going
wrong.
There are some things that can
happen after the acute infection,
like blood clots or opportunistic
infections, bronchitis
or a pneumonia that comes in that
can really complicate the recovery.
So we want to rule out all of those
kinds of of life potentially
life threatening conditions early
on.
But after that, the real main focus
is helping patients recover in
an appropriate fashion.
Most people, when they have COVID,
no pun intended, they're really sick
of being sick and want to get
back to their normal lives.
So they try to do whatever their
normal lives may be, whether it's
going to work for eight hours or
or training for a marathon.
And with that, they resume
their normal activities and they
have a flare of their symptoms,
sometimes lasting for days.
And this is kind of a hallmark
feature that we see with long
haul COVID.
But then that unfortunately sets
up this vicious cycle where they
try something and they're tired and
then they're down and out.
They become more deconditioned
and they try again and so on
and so on and so on until they're
very deconditioned and very
demoralized.
So, very early on, if possible,
we like our patients to visit with
our we have a team or team
of occupational and physical
therapists to help establish
a proper rate of recovery in
the proper recovery activities
along those lines.
We will often use medications and
other treatments to help a lot of
the symptoms.
A lot of the symptoms, like headache
or nausea or dizziness
that can get away get in the way of
patients trying to recover.
And so we treat those symptoms so
patients can better rehabilitate
more effectively.
And then we walk along with them
through this path, which tends to be
a good patient that gets better
around four to six months.
And then there's a group of patients
that takes a little bit longer.
The process is always too long,
though, for everybody.
That sounds incredibly frustrating.
Very much so.
Our patients do deal a lot with
some of the mental health issues
that can come with being sick for a
long time and losing function and
work.
And that's an important part of our
treatment as well.
Many patients, by the time they come
to us, they've been told some very
unhelpful things about their
condition, like this is all in their
head or they just
have depression and anxiety, or
they just need to tough it out and
be like the rest of us.
And that's very demoralizing
for patients. They have a lot of
guilt and self-doubt.
So one of the first things that we
do for patients is simply just
listen to them and let them know
that their symptoms are not just all
made up in their head and that we're
going to try to help them as best as
we can get through this really
mysterious condition.
Greg, you mentioned earlier that you
were all working together in the
medical community on a name for
this.
But what else do you see as
some of the most important research
that's taking place?
You mentioned some a little bit ago.
Yeah, you know, I really think that
we need to get a better
understanding of what is going on
at a cellular level with this
condition.
And this is a condition that's very
similar.
I won't say that it's the same, but
it's very similar to chronic fatigue
and fibromyalgia.
We've known about those conditions
for decades, but just because
of priorities in medicine
and stigma. Unfortunately, we
haven't made a good headway about
explaining what's going on in these
types of conditions on a cellular
level. I think with this
impact that we're seeing for long
haul COVID, there's going to be more
emphasis on getting this kind of
research done and frankly, more
funding.
I think once we have that, they will
be able to develop things like a
diagnostic test and then
also have more definitive treatments
other than a slow recovery.
The other diseases you mentioned,
chronic fatigue and fibromyalgia,
if I'm not mistaken, are also more
common in women.
Is that
true? Correct?
Yes. We also see more autoimmune
issues in women as well, too.
I think there is a biological basis
for this, not just a socioeconomic
basis.
Of course, both could be at play.
Mm-Hmm.
Interesting.
Thanks so much, Greg.
Any last words you'd like to share
today with our listeners?
You know, I tell patients that this
really is a long haul condition
and it may take a while.
Again, we do have patients now a
year and a half out with symptoms
still.
But that being said, I don't want
patients to lose hope.
We are still again at the very
beginning of trying to understand
this condition.
Again, we don't even have a name
that we can agree upon to call this.
So while things may be long
haul right now and it may be
important to develop coping skills
to manage these symptoms,
I'm hopeful that over the next year
or two we're going to have a lot
more progress on the science and
that we may have a cure or a
treatment that can fix this within a
few weeks.
Well, we hope with you, Greg, and we
look forward to hearing more when
you come back next time
and said, Thank you again.
So much for having me. It's always
been a pleasure.
Thanks to Dr. Bright Finish.
Sean is the director of Mayo
Clinic's COVID Activity
Rehabilitation Program for
being with us today to talk about
long haul COVID.
I hope that you learn something.
I know that I did.
We wish each of you a wonderful day.
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