Can She Solve the Mystery of Long COVID? Dr. Lisa Sanders Searches for Clues

This transcript was exported on Oct 20, 2023 - view latest version here .

Announcer (00:00)
th
The following episode originally aired on September 28 , 2023.
Mark Masselli ( 00: 12 ):
She is an internal medicine physician who's been called a paragon of modern medical detective
storytelling and now is tackling one of her toughest challenges, caring for long Covid patients.
Dr. Lisa Sanders ( 00: 23 ):
You have to understand that tests are questions. And if you've ever played 20 questions, it's
possible that the answer to your first 20 questions will be, "No." And that's where we are with
long Covid. The first 20 questions we ask for many people, the answer is, "No, it's not that." But
there's no test that says, "Wow, are you okay?" Tests don't work like that.
Margaret Flinter ( 00: 51 ):
Dr. Lisa Sanders, is the director of the Yale New Haven Long Covid Multidisciplinary Care Center.
It's a new centralized program with the unique approach.
Dr. Lisa Sanders ( 0 1:01 ):
Well, I educate the patients who come in and their family members, and when I speak in public
about long Covid, I certainly try to persuade people that it's real. But not having a blood test or
some sort of biomarker doesn't mean the disease doesn't exist. There are lots of diseases that
we diagnose based on clinical symptoms, so that's a bogus claim.
Margaret Flinter ( 01: 31 ):
This is, Conversations on Healthcare.
Mark Masselli ( 01: 42 ):
Dr. Sanders, welcome to Conversations on Healthcare.
Dr. Lisa Sanders ( 01: 46 ):
Thank you so much for having me.
Mark Masselli ( 01:4 8 ):
It takes years to develop effective treatments for complex conditions as we saw with AIDS.
Today, almost four years from the start of the Covid Pandemic, we know the lifesaving aspects
of the Covid vaccine and treatment have had a profound impact. But with long Covid, we know
that people are struggling with so many symptoms. Is it still an unknown of how many people
have been impacted with long Covid and what the long - term effects will be on their lives?
Dr. Lisa Sanders ( 02:1 9 ):

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

Look, we don't even know how many people really got Covid, so how could we possibly know
how many people have long Covid, it's hard to track these, it's hard to track people. Especially if
they're too sick or not sick enough to seek medical care. So we don't know. The estimates are
that about 10%, I think everybody agrees 10 to 12% of people who get Covid are likely to end
up with long Covid. And even though we don't really know how many people got Covid, that
turns out to be a lot of people.

Margaret Flinter ( 02: 54 ):
Well, That's really a great point, and I know the point's often been made that because we also
don't have good data on our marginalized populations and how they fared and what kinds of
services and treatment they accessed, even more confusing. But I know the World Health
Organization definition says symptoms must last at least three months after the initial infection
to be called long Covid. That is now generally accepted and is this length of time a key for you in
your evaluation of patients and your treatment planning? Tell us what that length of time... it
seems to the lay person, I think it seems like, "Well, three months is kind of definitive." How
does that play out in what you see in your program?

Dr. Lisa Sanders ( 03:3 8 ):
Well, we don't see patients until three months after their infection because we know that
symptoms that occur within that period often are gone by three months and that seems
reasonable. But even for people who have symptoms that last longer than three months, the
people that I see, there's some studies that show that the vast majority of these people feel
better. I don't say well, but feel better within a year. So I think that the prognosis for this is
pretty good. On the other hand, a year is a really long time to suffer and there are lots of
patients that I see who have been suffering for much longer than that. Most people get better
within a year, most not all.

Mark Masselli ( 04: 25 ):
I want to pull the thread on your statement that Covid becomes long Covid maybe in about 10
or 11% of the cases. What are you seeing as commonalities in the patients that you're seeing?

Dr. Lisa Sanders ( 04:3 9 ):
Let's see. I would say that fatigue is hugely common, hugely. Almost no one comes to us who
doesn't complain of fatigue, and it can be really a debilitating fatigue, like it's hard to get out of
the house, that kind of fatigue. Sometimes it's hard to get out of bed, that kind of fatigue. So
fatigue is a common problem.
( 0 5:05 ):
Brain fog or some sort of cognitive change that people notice is also a very common symptom.
Most patients who come with cognitive change talk about word finding difficulty and also
problems with attention or concentration. It's hard for them to attend the way they used to.
And in fact, that probably has a lot to do with the other most common complaint, which is
short - term memory problems. If you're not attending to the situation, it's very hard to

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

remember. There might also be another component of the memory difficulties, but I think that
the attention plays an important role. So fatigue, brain fog, those are probably the two most
common problems I see.
( 05:5 8 ):
But then there are a whole bunch of other problems. People feel short of breath, people have
chest pain, people get dizzy when they stand up. People talk about tachycardia. So we try to
figure out what to do with each of these problems, try to face them as they are because at this
point there is no treatment for long Covid. Based on the definition of long Covid is you had
Covid and then you felt bad. That's a pretty broad definition.
( 06:2 9 ):
And when you see patients with long Covid, they have different manifestations. Some people
are suffering from something that Covid did to them at the time that they had it. People with
shortness of breath often have some problems caused by Covid to their lungs. Other people
have disorders that are a little bit less easily attributed to instant damage from the Covid itself.
Maybe it's their immune system is different, or maybe it's an autoimmune disease, or maybe
it's just some other kind of problem. People say that there are six different kinds of long Covid,
and when you have something like that, there's not going to be, I don't think, a single cure or a
single treatment.

Mark Masselli ( 07: 22 ):
Let me just follow up on that around the sort of interdisciplinary nature of the team that you
need to have to address this waterfront of issues that people are facing. What's your team look
like?

Dr. Lisa Sanders ( 07: 37 ):
Well, we have three specialists who see most of our patients when they first come in. A
respiratory therapist sees all the patients who come in with some sort of respiratory or lung
problem, they get spirometry. Then a social worker sees them for two reasons. First, because
people often have issues with psychological problems of not being believed and not being
supported, which turns out to be very important when you have a chronic illness. Other times
people aren't able to work and so they need the more concrete skills of a social worker, so
that's been incredibly valuable.
( 08: 30 ):
And the third person who always sees everybody who comes in is our physical therapist
because one of the most common issues that patients with long Covid have is that they're
completely deconditioned. They've been laid low by their symptoms and they have not been up
and active the way they usually are. And so people are often very deconditioned and our
physical therapist tries to figure out a good program to get them back up to speed.
( 0 9:04 ):
So those are the people who see them in the office. But we also have very close relationships
with four other disciplines. We have a psychiatrist who sees patients who have anxiety or

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

depression. Sometimes that's a result of being sick, but sometimes it looks as if Covid can
actually cause those kinds of problems in some way that we don't really understand. So we
have a psychiatrist who sees patients who might need medical therapy for their new psychiatric
problems.
( 09: 34 ):
We also have cardiologist, a pulmonologist and a neurologist to see patients who need those
subspecialties. Those three specialties carried the burden of long Covid before we started this
clinic. So they have a lot of experience with seeing patients who have long Covid.

Margaret Flinter ( 09: 56 ):
Well, we really appreciate that there is a treatment center for long Covid, and thank you so
much for standing that up. I'm curious and very appreciative that you're talking about not just
treating the long Covid but treating the patient's response to long Covid, which is what a lot of
the individuals on your team would seem to do.
( 10: 16 ):
But as we look over the arc and having had the, for better, for worse, we've had the frontline
seat on the Covid pandemic for these nearly four years. What do you see in terms of trends,
people who were more recently infected in the last year and a half compared to the first couple
of years of the pandemic? Are we seeing differences in severity? How does long Covid today,
we've had enough time to say long Covid today, versus long Covid lasting from a infection back
in the 2020, '21 timeframe look? How is it different or is there any difference?

Dr. Lisa Sanders ( 10: 54 ):
There are differences. Certainly we know for sure that the worse your case of Covid was, the
more likely you are to develop long Covid. So the first blast of Covid was devastating,
devastating, and many people were terribly sick. And so they have a higher rate of developing
long Covid. And some of the patients that I see now developed long Covid in 2020 when they
got sick. More recent versions have a lower rate of developing long Covid because they're not
as sick and for some reasons, maybe because they're not as sick, but for some reason they have
a lower likelihood of developing long Covid and I think that's good news.

Margaret Flinter ( 11: 41 ):
Yeah.

Mark Masselli ( 11: 43 ):
I'm wondering how you answer skeptics who say there's no simple blood test or widely
accepted biomarkers to determine whether someone has long Covid. Then I wanted to pick up
on your statement earlier about the need for a social worker, that so many people are not
being believed, and some might be suggesting they're malingering, but the reality is so much
different. But first on the biomarkers, the challenge for this and generally the issue around
skeptics of how you're trying to educate people?

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

Dr. Lisa Sanders ( 12: 20 ):
Educate people. I don't know about educating people. I educate the patients who come in and
their family members. And when I speak in public about long Covid, I certainly try to persuade
people that it's real. But not having a blood test or some sort of biomarker doesn't mean the
disease doesn't exist. There are lots of diseases that we diagnosed based on clinical symptoms.
That's a bogus claim.
( 12: 56) :
And you have to understand that tests are questions and if you've ever played 20 questions, it's
possible that the answer to your first 20 questions will be, "No." And that's where we are with
long Covid. The first 20 questions we ask for many people, the answer is, "No, it's not that." But
there's no test that says, "Wow, are you okay?" Tests don't work like that. So it has to be a very
specific question, and we don't even know what the question is for many of these symptoms.

Margaret Flinter ( 13: 31 ):
I know, Mark, our clinical teams here at the community health center, really throughout the
history of primary care, there've been things that appear on the horizon for which the patients
need our support desperately, and we don't always have the answers. I like your analogy to 20
questions. It's more like a hundred questions you still may not get it, but lots of people are
asking though. A recent guest of ours was Dr. Leora Horwitz, who helps lead the National
Institute of Health study of Long Covid, as, I'm sure you know, called the Recover Project. I
wonder do you know what they're hoping to uncover with that project or can you tell us a little
bit about it? I think it's one of the largest research projects going on in long Covid.

Dr. Lisa Sanders ( 14:1 9 ):
I refer my patients to the people who keep track of that here at Yale, but I'm not involved
directly with that study. There's also another study here that's being done to look at whether
some of long Covid is caused by residual virus. So there's one project that's looking at seeing
whether a lengthy treatment with Paxlovid has any impact on how patients do. So there are
lots of studies going on, but we don't really know what the answer is yet.

Mark Masselli ( 14: 52 ):
Margaret, I just want to pick up a little on that of whether or not there is enough funding at NIH
or CDC to do the work that needs to be done. There was that huge infusion that came when we
started off and there was lots of money. Is it in the policymaker's rear view mirror right now,
and somebody like yourself who's a lead researcher at an incredible institution, what's it look
like to you in terms of getting the resources that you need?

Dr. Lisa Sanders ( 15:2 8 ):
Well, first of all, let me just say I am not a researcher. I'm a clinician, I see patients, I treat
patients. I try to get them referred to the right subspecialist or the right people that can help
them, but I'm not a researcher. I hope to be able to understand how long Covid presents in our
clinic. We've almost been up for six months and so at the six - month point, I'm going to put

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

together a database of the patients we've seen so far. But I'm not a researcher and I leave that
to the people who know research and understand research. I understand medicine, I
understand treatments in patients, but research is not what I do.

Mark Masselli ( 16: 16 ):
Will you publish on your findings there or what's the expectation in terms of taking that
important body of knowledge and sharing it?

Dr. Lisa Sanders ( 16: 27 ):
I don't know that I'll find anything that's worth publishing. There are many, many long Covid
clinics out in the world and there've been a lot of studies that look at what patients with long
Covid are like. There's not a lot of studies about what kinds of treatment to help people with
long Covid, were waiting for that. And that's one of the things I hope to find out. Are any of the
treatments that we're prescribing, or suggesting, or sending people off for, are any of them
working?
( 1 7 : 01 ):
And I look forward to finding out. Doctors are very poor judges of how successful their
treatments are. Some of that is because patients are very nice and don't call you up and go,
"That didn't work at all." But also we're all optimists because you can't be in medicine if you're
not an optimist fundamentally. So that's why it takes an assessment to really see how you're
doing. And that's the assessment I plan to take at the end of this month.

Margaret Flinter ( 17: 35 ):
Great. Well, we look forward to that, but also, again, speaking from the perspective of primary
care, it is incredibly reassuring to have some place to send patients or someplace to consult
with when you feel like you just have nothing left to offer in terms of the investigation or the
treatment. And I'm curious what you're seeing, and I would imagine it might be analogous in
other states, there aren't a lot of long Covid clinics, I'm glad there are some.
( 1 8:04 ):
But how are you working with primary care? Do you provide teleconsultation or trainings to
primary care providers? And if I could slide one more question into that, when you do look at
the patients who are getting referred, does it look like the populations in our communities? Is it
a diverse population? Is it representative of the many communities who are affected? What do
you think?

Dr. Lisa Sanders ( 18: 27 ):
Well, first, it is not representative of the communities that have been affected. I see very few of
the people who are traditionally underrepresented in medicine, we're just not seeing them, I
wish we did. And I'm trying to figure out the best way to reach out to those communities. I
haven't gotten there yet. We're only six months old, so that might seem like a long time to you,

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

but to me, it seems like yesterday. So we're still ramping up. I hope to start educating doctors
more.
( 1 9:07 ):
I'm going to Bridgeport to hospitalist conference to give a talk about long Covid there in
October, and I do what I can. I'll probably present some of my patients and findings at Yale to
our faculty there. I write about it occasionally, especially when I make a mistake in my diagnosis
column in the New York Times magazine. So I am doing what I can to spread the word, but I
have more work to do. We have more work to do to reaching out to other communities.

Mark Masselli ( 19: 42 ):
And speaking of spreading the word, we hear from so many, another recent guest of ours leads
the Mayo Clinic Covid Activity Rehabilitation Program, and he's Dr. Van, and he told us they're
seeing a decrease in long Covid cases and that patients do get better. And I think you've said
that over time, I sense that does match with your own experience.

Dr. Lisa Sanders ( 20:06 ):
Absolutely. The best thing that could happen to everybody is that we close down because we
don't have enough business. I don't see that happening right now, but perhaps soon. Not that
soon, but someday soon.

Mark Masselli ( 20: 23 ):
Yeah. Though we're seeing this most recent spike with a new variant out there, and that always
poses other problems. Margaret, you remember in February of 2020, we had Dr. Fauci, on and
he reminded us that coronavirus mutates, that's a given. I take it that while we hope there will
be a solution here, it doesn't seem like there's a lack of mutations happening globally, and this
is a global problem. And so I'm sure we're going to be in for a long run. But in this most recent
mutation, are you tracking at that level as well of what variant people have presenting?

Dr. Lisa Sanders ( 21: 10 ):
No, we don't. We don't because first of all, people usually don't know what they had. We see
them three months later. I suppose we could do a study to look to see, I'm not even sure if you
can find out which version of the virus they have because I'm not sure that that kind of
technology exists in testing. Maybe there's a difference in the antibodies, I don't know. But it's
a good idea. Now that you've suggested it, I'll think about it and ask around about it.

Mark Masselli ( 21: 42 ):
One good idea a day and we can go home, I think.

Margaret Flinter ( 21: 46 ):
Absolutely. Well, Dr. Sanders, we find ourselves on a beautiful day in fall at the advent of flu
season. And we were thinking that there might be a resurgence of Covid this fall. The calendar

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

hasn't turned to fall. The resurgence is already here. We're seeing it. We're not seeing state
level data yet in our state anyway. We'd like to see that very soon. But we can see in people
walking in the door, our own staff, colleagues, that Covid is definitely on the rise after a period
of being lower.
( 22: 21 ):
As you look at this fall coming, what's the messaging that your institution is doing around
getting the Covid vaccine out there? I know this is not specific to your domain of the long Covid
clinic, but it is your future patients that we're trying to prevent. What's being done to address
outreach, advertising, the underserved populations, and also the cost issues that may go along
with it this year. Any comment on that for our listeners?

Dr. Lisa Sanders ( 22: 52 ):
I don't know what Yale is doing. I know that certainly we promote vaccines for everybody,
especially people who have long. T he worst thing that can happen to somebody with long
Covid is that they shouldn't get Covid again. It doesn't necessarily make them worse, but it
certainly is not going to make them better. So a lot of times people are worried because there's
all this talk about symptoms after vaccines. Certainly that can happen symptoms after vaccines,
but you know what? Symptoms after actual Covid are so much more likely, so much worse, or
maybe not worse, but so much more likely.
( 23: 35 ):
I've seen a handful of patients who developed a version of long Covid after they had just the
vaccine. But they're just a fraction, a tiny fraction of the people who have long Covid. And many
more people got the vaccine, than got Covid. So you can tell that it's pretty rare to get any sort
of long - term reaction after the vaccine. So I encourage everybody to get the vaccine. Certainly
everybody on my staff, and I suspect most people who see patients at Yale will get this new
vaccine.

Margaret Flinter ( 24: 12 ):
Great.

Mark Masselli ( 24: 13 ):
Well, that's great. I think that's such an important message, and I think we've talked about it
before. It's not in the medical realm about we are a very divided society on this issue, and we've
had a number of people, Dr. Fauci, and many others who've been on, who've been attacked for
their positions. And is there a magic answer? You've been trying to speak as a physician to
people and just tell people what you see, but how do we bring people together?
( 24: 52 ):
Medicine had always been a place where, a little foreign policy, we were always united on
things outside the country, but it seems on medicine, on this particular issue, the country's
been divided. What are your thoughts about how we might find the seam of opportunity so
that we can work together? We can disagree, but not be disagreeable?

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

Dr. Lisa Sanders ( 25:1 8 ):
Gosh, I don't know. Isn't that what everybody's mother taught them when they were in
kindergarten? It's true that science has been taking it on the chin for the last few years from
people who have decided that science is not the way to go. I don't understand that position,
but I understand it's out there. I have run across very few people who are against vaccines,
once they have long Covid. So I'm not sure what to do about it. And the number of people who
get vaccines goes down, and I don't know that that's because people are anti - medicine. I think
that people have just feel ready to move on past Covid. I only wish that Covid felt the same way
about us.

Margaret Flinter ( 2 6:07 ):
That is a memorable quote, we might have to use that.

Dr. Lisa Sanders ( 2 6:07 ):
Please.

Margaret Flinter ( 26: 15 ):
We are unabashed fans of your column in the New York Times. I will admit probably like
anybody with a clinical background trying to guess the answer before you reveal it. And there's
some pretty challenging cases, all of them that you talk about. But I wonder if you could just tell
us a little bit about yourself and how you came to this area of being so interested in the
mysterious disease that nobody else can figure out the answer to. What brought you to this,
and just a little bit about your career trajectory?

Dr. Lisa Sanders ( 26:4 8 ):
As soon as I heard about this long Covid clinic that they were starting at Yale Haven Hospital, I
was completely interested in it because it's a chance to be part of something that's new, to be
part of what's the discovery process. I'm not a researcher, but I am a clinician, and I think that
being able to help people at a clinical level is so important. And so that appealed to me right
away.
( 27: 17 ):
And I've always been interested in areas of uncertainty in medicine. When I first was in medical
school, I came to medical school as a second career. I was in my late thirties and I had covered
medicine when I was in my last career when I was a television producer. And I thought I knew
medicine, but I didn't understand diagnosis. And when I first saw that diagnosis was not
something like the multiplication tables where you just memorize everything and then the
answer immediately.
( 27: 53 ):
When I saw that there was, at times, a need to figure things out. I was very excited about
diagnosis and it's really been a passion of mine since medical school, and I love that detective
work and I can tolerate and even enjoy the uncertainty that goes along with that. Trying to

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

figure out what it might be, what might be happening? And I felt the same way about this long
Covid clinic. I feel like this is something where we really don't know. It would be great to have
the opportunity to try to figure something out, even if it's just one patient at a time, because
that's how clinicians work. That's how doctors work, one patient at a time.

Margaret Flinter ( 28:3 9 ):
Thank you for sharing that with us. It's great.

Mark Masselli ( 28: 42 ):
Yeah, I think that's a great message. We were talking a little earlier about the divide that
happens, but I think earlier on we had Dr. John talking about how people have come to
understand public health and be excited about it. So there's this other side of the equation
here. What's your message to young people who are thinking about the medical field right now
and beyond Covid, but the excitement that you see to maybe encourage them to pursue this
noble profession?

Dr. Lisa Sanders ( 29: 17 ):
Well, when I started my column, I didn't say this because it sounds so goofy, but my hope was
to attract the smartest, best people to internal medicine, to general internal medicine, to come
and see patients in all their complexity and take whatever comes in the door. That is the nature
of being an internist.
( 29: 45 ):
And so I feel like I've had some success with that, and I hope to continue to have success
because this is, let's not call it noble, maybe it is, sure it is. But what it really is exciting, and
interesting, and changes all the time. If those are things that interest you, then this is the place
for you. If you're interested in this, come on in, the water is great. I've had such a lovely time
being a doctor. It's just been everything I've wanted it to be.

Margaret Flinter ( 30: 21 ):
Yeah. Well, we couldn't agree with you more. Thank you so much for all your years of practice.
Many more to come, and thank you for joining us, and thanks to our audience. Be sure to go
online to chcradio.com to sign up for updates. You can also share your thoughts and your
comments about this program. But we want to thank you so much for joining us today on
Conversations on Healthcare and sharing your experience of these past six months in particular,
as well as your comments on your career. Thank you so much.

Mark Masselli ( 30: 51 ):
Thank you so much.

Dr. Lisa Sanders ( 30: 52 ):
Thank you. Thanks for having me.

Transcript by Rev.com

This transcript was exported on Oct 20, 2023 - view latest version here .

Margaret ( 30: 56 ):
This copyrighted program is produced by Conversations on Healthcare and cannot be
reproduced or remitted in whole or in part without the express written consent from
Community Health Center, Inc. The views expressed by guests are their own, and they do not
necessarily reflect the opinion of Conversations on Healthcare or its affiliated entities.

Transcript by Rev.com