Mayo Clinic Long COVID Expert Dr. Greg Vanichkachorn: Cases Down as Stigma Continues

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Speaker 1 ( 00:04 ):
Studies show that around 10% to 20% of people infected by the COVID virus may go on to develop
symptoms that can be diagnosed as long COVID. What should you do if you think you're dealing with it?
And what's the latest research telling us about long COVID?
Dr. Greg Vanichkachorn ( 00:20 ):
If we can get people more comfortable in accepting this condition and just treating the patient and their
symptoms versus, "Oh, is it long COVID? Is it not long COVID? Is it not real? Or is it real or just in their
brain?" These people in the end, all they need is our help.
Speaker 3 ( 00:33 ):
Dr. Greg Vanichkachorn is the Director of Mayo Clinic's COVID Activity Rehabilitation Program. He's an
international expert on helping those coping with COVID months and even years after their initial
infection. It's a situation with big implications for our healthcare system.
Dr. Greg Vanichkachorn ( 00:50 ):
Because of what we see in long COVID, we think that pushing the body too hard, and the too hard part is
the key here, can actually make things worse. Because of long COVID and its inflammatory changes that
we think underlie it, individuals with this condition, they don't have the normal physical responses to
activity and exercise.
Speaker 3 ( 01:12 ):
And this is Conversations on Health Care.
Speaker 1 ( 01:23 ):
Well, Dr. Van, if we may, welcome to Conversations on Health Care.
Dr. Greg Vanichkachorn ( 01:29 ):
Thank you so much for having me. It's my pleasure to be here.
Speaker 1 ( 01:31 ):
You identified long COVID very early in the pandemic in your occupational medicine practice. We know
COVID symptoms can create biological changes. Research led by a scientist at the University of Helsinki
suggests that genetics plays a role, but right now there are no tests nor biomarkers to diagnose long
COVID. And unfortunately, no therapies to treat it. I'm wondering if you could describe for our audience
long COVID?
Dr. Greg Vanichkachorn ( 01:59 ):
Yeah, absolutely. Long COVID is a group of symptoms that occur after a COVID infection that lasts way
longer than the normal recovery period. We're often talking weeks or months after a COVID infection.
Now, the symptoms that we see primarily with this condition, the number one thing is fatigue and it's
quite extraordinary fatigue. So for example, someone would report that they might do something as
simple as take their dog out for a walk around the block or take out the trash and then they can
experience fatigue that sometimes lasts for hours or even days afterwards. It's quite disabling. The other

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symptoms that we commonly see are shortness of breath, headaches, as well as troubles with thinking,
often referred to as brain fog.

Speaker 3 ( 02:47 ):
Well, Dr. Van, obviously these are incredibly troubling for people and I think we've heard a lot about the
changes in long COVID over these years since the vaccines became available as the course of the
pandemic moved on. Are you still seeing new patients who present with this kind of picture or has it
modified over time? And the way that we have so many variants of COVID vaccine and the COVID
pathogen itself, is long COVID also changing?

Dr. Greg Vanichkachorn ( 03:17 ):
We actually have not seen much of a difference in how long COVID actually presents. I would say what
we have noticed though overall, and this is good news, is that there has been a decreased frequency of
the occurrence of long COVID and we think this is primarily due to the different variants of the
coronavirus out there. Of course, time will tell what's going to happen this fall with some of the new
variants that are out there, but I'm hopeful that we won't see a massive increase in the number of cases.
( 03:44 ):
With that being said, even though the Omicron variant seems to have less cases of long COVID, we still
have a steady stream of new patients that come in requesting help, sometimes two or three months out
after their infection in 2023.

Speaker 1 ( 03:58 ):
There's a study out right now in the journal Nature Medicine that found long COVID symptoms create a
greater burden of disability than heart disease or cancer. Are you seeing this in patients, and what's your
reaction to these findings?

Dr. Greg Vanichkachorn ( 04:14 ):
I am seeing these in patients. My reaction is one of not surprise and highlights the importance of
tackling this condition and similar conditions in medicine. Being an occupational medicine provider, one
of the things that my group has been very focused on from the very beginning when we started working
with these patients is how is their function actually doing and how are they doing with their work?
There's a lot of focus on the symptoms out there and that makes sense, but those symptoms come
down to affect a person's ability to live their life, both at home and at work.
( 04:45 ):
At the time of presentation to our clinic, a little bit more than half of the individuals that we saw were
able to work in some form. That sounds promising, but at the same time, the average time to
presentation between someone's infection in a place like Mayo Clinic Care was about three months. So
another way to look at that is three months out after an infection, only a little bit more than half of
individuals are able to get back and work in some form.
( 05:12 ):
In some of our other studies out there too that have looked at the long - term effects of the long COVID
phenomenon on work, it was found that individuals seven months out after their infection, 72% of
individuals who were fully employed went down to 44%.

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Speaker 1 ( 05:29 ):
Were you seeing any waning of symptoms 18 months out or we may not be that long for the study?
What have you been identifying?

Dr. Greg Vanichkachorn ( 05:37 ):
Yeah, that's a great question. There's a lot of gloom and doom out there when it comes to long COVID,
but we do see that people get better. Some people have permanent symptoms and they're still battling
with those, but some people do get fully better, sometimes around four to six months out typically, but
for individuals who are experiencing the long - term course of long COVID, what we have seen is the
fatigue and the physical complaints like muscle aches and shortness of breath, that does seem to get
better, most of the time fully, but really seems to be lingering or some of the cognitive effects like brain
fog.

Speaker 3 ( 06:09 ):
Well, it's good news certainly that we think that whether it's the changes in the variants or it's the
vaccines that people have, that it certainly reduces the risk. But I'm curious, Dr. Van, this is not the first
disease of our clinical lifetimes to present with fatigue, with muscle aches, with some cognitive
disability. We're in the northeastern part of the United States. We've certainly lived through the advent
of the Lyme epidemic and all the sequelae.
( 06:38 ):
When you see patients, is it usually very clear cut? Do you think in practice generally not in specialist
practices like Mayo may offer that people get a diagnosis correctly? Might we be missing other things?
Do you have a protocol for what else should be looked at? Maybe share a little bit about that with us?

Dr. Greg Vanichkachorn ( 06:58 ):
Yeah, the problem with long COVID or the two problems with it is that the symptoms can be quite
nebulous and overlap with many other medical conditions like you alluded to. And also, we don't have a
diagnostic tool that we can use to say, "Aha, this is long COVID." So oftentimes the diagnosis right now,
it comes to a matter of exclusion. When we first start working with patients, we go through a general
workup, take a general history, and we do diagnostics as we need to, maybe for Lyme's disease or
cardiac inflammation, but if we don't find anything and the story fits with symptoms worsening after a
COVID infection, that's when we start to think, "Okay, maybe this is the diagnosis of long COVID."
( 07:38 ):
The problem with that is that there may be people out there who are overdiagnosed as having long
COVID and individuals out there who are underdiagnosed as long COVID, and it's a trend that we're
trying to figure out and solve and prevent with additional research.

Speaker 1 ( 07:54 ):
You're an advocate for olfactory retraining for long haul patients. You say it's a way to speed things up
for those who've prolonged trouble with taste and smell after an acute COVID infection. I wonder if you
could explain to our audience how this training works and how did you alight on it?

Dr. Greg Vanichkachorn ( 08:14 ):

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Absolutely. So the loss of taste and smell, that's something that we have all heard about during the
acute infection, but for some folks it does last for quite a bit of time, several months, and that can be
quite a miserable few months if you imagine you can't taste or smell anything, or sometimes things that
normally taste and smell good, taste bad. The nerves that are involved in taste and smell, they have this
ability to regrow. It's called neuroplasticity, but essentially, they can be regrown. And by using odors to
stimulate the nerves that are involved in smell, we believe that we can help them regrow properly and
form the proper connections that bring back normal taste and smell.
( 08:55 ):
There's also some additional research that using things like olfactory retraining can help rewire some of
the deeper parts of the brain to actually help improve cognition. The process is pretty straightforward.
We have individual smell, four different odors, twice a day for 30 seconds at a time, and we had them
do that quite frequently for... Sorry, quite a prolonged period of time, about three months, and patients
will notice an effect. It's subtle, but a subtle effect of getting better faster versus later.

Speaker 1 ( 09:25 ):
Are you planning to publish on this or have you published on this?

Dr. Greg Vanichkachorn ( 09:29 ):
People are ahead of us on that. One thing I will say is that we try to stick to only the research driven
interactions or interventions here at Mayo. So that comes from after seeing some similar results in the
research.

Speaker 3 ( 09:41 ):
Very important to get out into the primary care field where people may not be as familiar with the
literature. So thank you so much for sharing that. That's certainly a low risk intervention for people.

Dr. Greg Vanichkachorn ( 09:53 ):
Absolutely. A very easy fix.

Speaker 3 ( 09:55 ):
I noticed another piece of advice that's been attributed to you is that long COVID patients should focus
on resistance activity instead of things like walking and cycling, counterintuitive somewhat. My answer
to almost everything is take a brisk walk, you'll probably feel better, but in this case, you're saying they
shouldn't do activities that elevate the heart rate. Why is that?

Dr. Greg Vanichkachorn ( 10:18 ):
Absolutely. So first of all, I'm a big proponent of exercise in healthcare, and so I'm never going to say the
exercise is a bad thing, but because of what we see in long COVID, we think that pushing the body too
hard, and the too hard part is the key here, can actually make things worse. Because of long COVID and
its inflammatory changes that we think underlie it, individuals with this condition, they don't have the
normal physical responses to activity and exercise.
( 10:50 ):
So for example, most of us, when we start to go for a brisk walk or do some more vigorous exercise,
there's that warmup period where our body adapts and it goes from being a horrible experience to

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being something enjoyable, but that change doesn't seem to happen well in individuals with long COVID,
and it's similar to some of the problems that we see with things like postural tachycardia syndrome or
pots. So the body's just not adapting to that.
( 11:14 ):
So in individuals with long COVID, if they try to push themselves too hard and just grit their teeth and
exercise their way fully back to recovery in a no pain, no gain attitude, their bodies just crash and they
experience increased inflammation. And then their symptoms get worse for hours or days, that leads
them to rest and leads to further deconditioning, and then they get stuck into this vicious cycle. So it's
not so much about not doing activity or exercising. It's just about a slower pace to that activity.
( 11:47 ):
Interestingly, in those folks who have conditions like postural tachycardia syndrome or things like
chronic fatigue and fibromyalgia, they're able to tolerate more recumbent resistance exercises before
they can get to tolerating things like cardiovascular exercise. So that's why we have people start with
things like the recumbent cycling or rowing. Once the musculature regains its strengths and tone, we
think the body is better able to push around blood flow during activity and then they're able to
transition to the cardiovascular exercise.

Speaker 1 ( 12:23 ):
That's great advice. It was hard to hear that you are evidence driven in terms of your work. We note that
the National Institute of Health has started a research initiative to study longer term effects of COVID -
19, including long COVID, and one of the leaders of the NIH Recovery Program is Leora Horwitz from
NYU Langone. She's been a guest on our program, and the goal here was to identify causes as well as
means of prevention and treatment. I'm wondering what you could tell us about other research that
you're keeping an eye on or engaged in?

Dr. Greg Vanichkachorn ( 13:05 ):
So I think there's two phases of research that's going on right now that are both important. One is
what's really underlying the condition of long COVID on a chemical level? What is the process that's
going on? We still don't understand that, or the process that's going on for potentially similar or the
same conditions like chronic fatigue and fibromyalgia. So I'm always on the lookout for anything that
could indicate, okay, there is a new inflammatory marker that may underline some of these changes.
There has been some good research such as the genetic research that came out recently involving the
FOXP4, I believe it was, gene, and how that may be more present and somehow related to long COVID. I
think if we can get the answers to what's going on on an underlying level, that will open up a whole new
doorway of therapeutics that we could use and be able to focus where our treatments are.
( 13:55 ):
The other thing that I'm looking out for is exactly that randomized clinical trials well - designed about
treatments, and right now there's hardly anything out there in that level. There are some anecdotal
pieces as well as some smaller observational studies that have given us some hints on things that we can
use, but we're still quite lacking in this area.

Speaker 1 ( 14:17 ):
Yeah, I think she has 15,000 people in her study, which is probably closer to the size that we'd like to
see.

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Dr. Greg Vanichkachorn ( 14:26 ):
Yes, exactly, exactly. For example, we have a lot of people who are wanting to use Paxlovid for the
treatment of long COVID, and I've had plenty of patients with long COVID who took Paxlovid during the
acute infection or even afterwards, but I'm not ready to say that Paxlovid doesn't work. What we need
are some of the large numbers, like the studies that are being done by the NIH, including here at Mayo.
We're partnering with them on that. That's the kind of information we need before we can say yay or
nay.

Speaker 1 ( 14:52 ):
We had Dr. Ashish Jha on the show yesterday and former Biden COVID Czar there, if you will, and now
back at Brown as the Dean who I think Margaret was really pushing Paxlovid as a treatment for those
over 50. But as you say, there's probably more data out there

Speaker 3 ( 15:15 ):
As a preventive, not for long COVID.

Speaker 1 ( 15:17 ):
Right. No, as a preventive for sure. I was just wondering about the level of financial support that you
think that's out there. I'm wondering if too much of this, "It's now in the rear - view mirror," is influencing
the financial support that's really needed to do these very detailed clinical trials? What are you feeling
or seeing out there?

Dr. Greg Vanichkachorn ( 15:42 ):
Yeah, this is probably my greatest fear when it comes to long COVID. We've had post - viral conditions for
the longest time since all the way back to the Spanish flu even, [inaudible 00:15:54] influenza and Lyme
disease, but there hasn't been a lot of emphasis on this because it just hasn't been raised to a good level
of awareness. When the pandemic came, that all changed and now everyone was focused on long
COVID and there was lots of support for research and such, but these things take time. The pandemic's
behind us, we're seeing less numbers of long COVID, but it's not going away. So I am worried that the
financial support is going to run out behind trying to figure out these really serious conditions that are
affecting millions of people out there. But fortunately, by having discussions like we are right now, we
can keep this on the forefront and keep the science moving forward.

Speaker 1 ( 16:31 ):
Are you seeing anything maybe internationally? We've been keeping an eye on the UK and other places,
anywhere that you and your team are looking at for if it's not happening in the states where other
people are taking a leadership role here?

Dr. Greg Vanichkachorn ( 16:49 ):
I would say the UK has been really paramount in a lot of the early research, and we do have some
connections there as well through Mayo Clinic. And so if we were to branch out across the world in
which we hope to do, that would be my number one choice. We've also had some good success working
with our folks down in Australia.

Speaker 1 ( 17:06 ):

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Yeah, that's right.

Speaker 3 ( 17:08 ):
Dr. Van, the concern among so many others is around health disparities, also with long COVID, and
maybe you could comment on this is a starting point of health inequity and health disparities,
inflammatory diseases, chronic illnesses, disparities in access to healthcare. Based on what you are
seeing, do people present differently based on factors like race and ethnicity as well as age? We're
hearing young women may be more likely effective, which is not as maybe is apparent to some. Tell us
about that and how do we address that? Part of it is the research and making sure those studies are
large enough. Obviously like the All of Us Project nationally, but could you comment on that a bit?

Dr. Greg Vanichkachorn ( 17:58 ):
Yeah, thank you so much for asking about that. I think that's something that's really quite overlooked,
this disparity part about long COVID. It's something I'm really passionate about. Long COVID affects
everybody across the population, right? That's got to be the case. Here at Mayo Clinic, what we have
noticed is that certain individuals are able to access care for long COVID, and that's the same across
other institutions. A person that typically can go to a specialty clinic for long COVID, they've got support
for things like financial support, paid time off, long - term disability through an employer, all those kinds
of means for travel and such.
( 18:34 ):
That's not something that's available across the board to all individuals. For example, we have not seen
in the research or in our clinical practice, individuals who work more on the forefront of our industries,
let's say farmers or agricultural workers or line workers from automotive factory. We know those
individuals must be out there and suffering symptoms, but we're not seeing them get care.
( 18:59 ):
Health disparities, of course, they existed long before COVID came around, but if anything, the
pandemic and the long COVID phenomenon has exacerbated that disparity. So we are actively working
with some of our local groups, community engagement boards and so forth to see if we can improve
that, reach out and improve that disparity. One area that we are particularly worried about are
individuals who are already living with disabilities. It's very difficult for them to get care already. How are
they doing now if they have long COVID?

Speaker 1 ( 19:34 ):
In the category of insult to injury, there are skeptics out there about long COVID and you've been
concerned that patients can be stigmatized and not believed. I'm wondering if you could share your
insights you have on blaming the victim situation?

Dr. Greg Vanichkachorn ( 19:53 ):
Providers of medicine and medicine in general, it's an area where the unknown is not willingly accepted,
the mysterious. And when someone doesn't know what something is, it's easy to just chalk it out to
something else for a quick answer. So a lot of people who were presenting with these symptoms early
on, providers didn't know what to make of it. They never had heard about these kinds of long - term
issues. So they reached for whatever they could find was the most common explanation that seemed
the most similar, and that often resulted in diagnoses of anxiety and depression.
( 20:23 ):

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And what I remind folks out there, other providers who are trying to tackle this issue is that, okay, let's
just say, devil's advocate that this condition is all related to some sort of psychiatric fallout from COVID.
Well, those people, if they had that condition, they need our care as well too. And I remind individuals
that the care for patients with long COVID is typically not that much different than how we would treat a
patient if they didn't have long COVID. So for example, if they have anxiety, we would use the same
tools. If they have a headache, we would use the same tools. There's only some subtle differences that
need to be acknowledged, such as the pacing piece.
( 20:58 ):
So if we can get people more comfortable in accepting this condition and just treating the patient and
their symptoms versus, "Oh, is it long COVID? Is it not long? Is it not real or is it real? Is it just in their
brain?" These people in the end, all they need is our help. That's where we're mindful.

Speaker 1 ( 21:14 ):
Well, I also think it strikes an important chord for us in the context of team - based care, right? Because
you really need to bring on all the disciplines, certainly the behavioral health professionals along with
the medical clinical team as well, and obviously occupational therapy and a whole range of people in
terms of the approach that really needs to be taken for people who have long COVID.

Dr. Greg Vanichkachorn ( 21:42 ):
And I would just add in, you asked about the stigma, and that is definitely a part of long COVID. There's a
stigma for patients who get this diagnosis. I would say there's also a little bit of a stigma for providers
who give the diagnosis as well too. So all the way around, it can be a very difficult situation for people to
understand.

Speaker 3 ( 22:04 ):
Dr. Van, you obviously are expert in this area, have so much to offer, and you pointed out that you're
seeing the people who get to you, but hard to know who are you missing, but knowing that you're
missing certain groups of people just by the populations that surround you. I wonder what your take is
and what's the force multiplier here to get this knowledge out? Across the country, we have 1,300
community health centers with 12,000 sites take care of 30,000,000 people. We have the Veteran
Affairs, we have primary care associations, but it seems like we need a systematic way to get this
knowledge out to everybody. You're probably familiar with Project Echo that originated in New Mexico.
We've run Project Echos. Have you given thought to this or are you participating in any initiatives like
that to try and really disseminate this knowledge?

Dr. Greg Vanichkachorn ( 23:00 ):
Yes, absolutely. So interestingly enough, I started my career as a primary care doctor, and so enabling
the primary care community to help individuals with long COVID has always been a long - term goal of
mine, and we are working on several initiatives and strategies to help bolster the primary care
community in this area. So for example, I work very closely with a think group at the Minnesota
Department of Health, and the sole purpose of that group is to develop tools for primary care practices,
public health centers across the country to have better access to important knowledge and tools used
for the treatment of long COVID.
( 23:40 ):

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We have already done several ongoing education seminars about long COVID. Those are the first things
that we did, but we find that what providers really, really need is something that they can access right
then when the patient is right in front of them and they're busy [inaudible 00:23:56] every 15 minutes.
And so having things like the tools that we're developing with the Minnesota Department of Health, I
think that will be helpful.
( 24:03 ):
Frankly speaking, another thing that's been really good is telehealth. During the pandemic, a lot of the
regulations and limitations for telehealth went down and we were able to help patients from all across
the country. That's not the case at this point. So I do think that there could be a network of long COVID
experts that would be available across the country if we're able to make some headway in that kind of
area.

Speaker 1 ( 24:28 ):
Well, let me pull the thread on that theme of access because I think particularly focusing on the great
work that Mayo Clinic does, because people often hear Mayo Clinic and they think they need to hop on
a plane to get to Rochester, Minnesota, but that's not really the case. And what kind of long COVID
patients can be treated close to their home? I know here in Connecticut, we are a statewide practice,
but in one of our counties, Middlesex Health, there's a strong partnership with Mayo Clinic. And also,
Cleveland Clinic and others have similar types of network. Is that one of the ways that people should
understand that they can access some of the best and brightest minds locally?

Dr. Greg Vanichkachorn ( 25:13 ):
Absolutely. Absolutely. So again, we use telehealth quite a bit to interact with patients from all across
the US during their early parts of the pandemic. And right now we don't try to foster a model where we
just bring everybody to Mayo Clinic to get their ongoing care. Long COVID, as the name suggests, can
sometimes last for several months and need ongoing treatments. So something that we always ask our
patients about is their support in their local community where they have a primary care provider. Is
there a physical therapy practice that they can work with?
( 25:42 ):
And so we try to provide the guidance and treatment interventions that patients can use in their local
community and stay there. We think that's going to be best for the patients and we respect their
finances as much as possible, and also empower their local community for that next patient. And again,
it's more difficult now. Now we have to be licensed in that state to see a new patient from the state. So
because of that, my colleagues and I, we are getting a lot more medical licensees done so we can reach
out more.

Speaker 3 ( 26:14 ):
Yeah, that's been challenging across the country. I know our time is drawing to a close, but I did want to
ask about one essential element of care I think that you described, and that's what can we do within the
behavioral health community? I think you've talked about using cognitive behavioral therapy in your
practice there. Maybe tell us a little bit about, for people who aren't familiar with it, what underlies CBT
as we refer to it that is helpful in this scenario?

Dr. Greg Vanichkachorn ( 26:45 ):

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Now, there is all sorts of emotions when it comes to being ill. And then when you throw in something
like COVID that uprooted our entire lives and crossed over political boundaries and such and divided
things along that axis, this is a very traumatic experience for a lot of individuals. And so when I see
individuals who've experienced long COVID, sometimes they've been told some very terrible things and
have been shunned to the side by families or friends, there can be a lot of underlying emotion and
damage that's done by the time they see me.
( 27:16 ):
Part of the process of healing from long COVID is definitely in the physical side, and most people want to
focus on that when they see us. But I often remind patients that both the mind and body work together
and we have to address both in order for them to get better. Sometimes that's as simple as treating
anxiety and depression with medications, but oftentimes it relies on really exploring what a person is
feeling and the reasons behind that. So I've found using skills in CBT, Cognitive Behavioral Therapy, to be
very helpful in talking to my patients about this. Sometimes the only intervention we do is just talking
with them and helping them reframe their condition and how they're going to progress through it.

Speaker 1 ( 27:55 ):
Thank you so much, Dr. Van, for joining us today, for your insights, for your pioneering work. Thank you
to our audience for joining us as well. There's more online about Conversations on Health Care,
including a way to sign up for email updates. Our address is chcradio.com. Again, we really appreciate
your time today.

Dr. Greg Vanichkachorn ( 28:14 ):
Thank you for having me.

Speaker 1 ( 28:15 ):
Alrighty. Take care.

Speaker 3 ( 28:21 ):
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