ic music) - Hey y'all.

I'm Kiara Butler and welcome back to Generation Rising where we discuss hard-hitting topics that our diverse communities face every day.

Today's topic is long COVID and I'd like to welcome Dr. Francesca Beaudoin and Dr. Scott Rivkees from Brown University School of Public Health's Long COVID Initiative.

Welcome.

So happy to have you here today.

- Thanks.

Very happy to be here and talk about long COVID.

- Yes.

- Yeah, thank you.

Really important issue, appreciate the interest.

- Yes.

So there's COVID, the virus, right?

And then there's long COVID.

What exactly is long COVID?

- This is the million dollar question that we're still getting to the root of.

And to start, this thing has many names: post-COVID conditions, post-acute sequelae of COVID-19.

The patient communities and advocacy groups often refer to long-haulers or chronic COVID.

And so when something has a lot of names, you know there's bound to be confusion around it.

For our purposes, I think long COVID is the most commonly known name.

And we're talking about persistent symptoms that continue following that initial acute COVID infection.

So long past the point of normal recovery, people are still suffering from a variety of health effects that last weeks, months and in some people who were hit very early on, we're talking now years.

There are a lot of symptoms.

Some reports attribute more than 200 symptoms to long COVID.

- Wow.

- And so there's a saying going around, "When you've seen one person with long COVID, you've seen one person with long COVID," because people are not experiencing long COVID in the same way.

You know, some of the common symptoms that we're seeing are fatigue, shortness of breath, chest pain, cognitive dysfunction, this quote unquote brain fog.

But it also depends on who we're talking about.

Are we talking about adults or are we talking about kids for instance?

- Yeah, you know, just to put things in perspective, you know, it's hard to believe, you know, we've been in this pandemic, you know, for just two plus years, but there have been a hundred million Americans diagnosed with COVID.

We've lost a million individuals in this country.

And some people think as many as one in five, one in six individuals have had COVID.

So that's a staggering number of individuals who may have long COVID, you know, upwards of 15 million individuals.

- Mm-hmm.

And so in thinking about the name long COVID, we've been in the pandemic for about two to three years now and so we're starting to see those symptoms persist.

Do you think that more symptoms will emerge as the years progress?

- That's a great question and we, I hope, that we are getting to the peak of cases in terms of long COVID because we think that the earlier variants, so the start of the pandemic, that more people developed long COVID with those earlier variants plus vaccination does appear to be protective, both in developing acute COVID, severe COVID, and then long COVID.

So we may see a tapering off, but the question about, you know, what symptoms will we see far into the future is still to be determined.

We were just talking earlier about the potential for long COVID to result in dementias and other chronic illnesses.

- You know, it's really important, again, this is a new virus.

This is a new condition that we're still learning about.

And that's why it's really important that we continue to invest in research, try to understand really what is the impact is gonna be 'cause the impact is gonna have medical impact, but it's gonna go beyond that.

It's gonna affect individuals ability to work, individuals ability to perform in school.

So beyond the medical issue, there are other impacts as well.

- Yeah, so if I'm sitting at home, I just got over COVID, there's still some lingering symptoms, like what would my day-to-day look like?

What should I be looking for to know to go to a doctor to say, "Hey, I think I have long COVID.

- You know, if you get COVID, I think most of us are going to expect that we'll have symptoms for several days, even a couple of weeks.

But if you're hitting that three to four week mark and you're still not totally better, then it's time to see your primary care doctor.

And I'm gonna emphasize here that it's really important to have a closer relationship with your primary care because if you are someone that's, several weeks after acute COVID infection, you haven't returned back to normal, you know, persistent fatigue, trouble breathing.

In some cases we're talking about people that really can't even get out of bed.

Having that relationship with the primary care that can help make that diagnosis is key.

Long COVID mimics other things.

And so it's really important to distinguish, are we talking about long COVID or are we talking about something else?

If you are fatigued to the point of not being able to get out of bed, it's important that your doctor makes sure that something else isn't going on.

There's no test that we can do to say that somebody has long COVID.

And so this is a real challenge with making the diagnosis.

It is a diagnosis of, what we call a diagnosis of exclusion.

You rule everything else out.

And then based on the history, the symptoms, the timing, you get to the diagnosis of long COVID.

And many people are suffering with long COVID and probably don't even have the diagnosis because of those of those challenges.

- All right.

And so we know that there are a lot of health disparities, especially impacting the BIPOC community.

So the Black, Indigenous, people of color community, have you seen that community impacted more by long COVID?

What does the research say?

- You know, first of all, anybody who gets COVID is at risk for getting long COVID.

And we know that there's some communities that have been disproportionately affected by COVID.

We know that there's some communities that have disproportional access to healthcare.

So this is something that's being looked at at the present time.

But when you have situations where people haven't had vaccines, increased access to healthcare, this is where you're gonna see more long COVID situations.

- Talking about a type of inflammation so powerful that it can render someone like me completely blind in one eye, someone with no past medical issues, no family history.

It's not just, "Oh ha-ha, people are still recovering, people still feel sick."

No, long COVID quite literally wrecked my health.

- Fatigue got so bad to the point where I've literally felt like my soul was being taken out of my body little by little with a straw.

- And so, you know, we live in the world of social media, right?

- Sure.

- And so on social media, they say all the time, like, you should take things slow until you're feeling well.

Do you agree with that?

Should people take things slow?

If they start feeling good again, can they go back to their normal routine?

What do you suggest?

- We're learning a lot about what's appropriate, return to work, return to play, return to school in the setting of COVID.

I think this is where an ounce of common sense can play in that, in the initial acute phase of COVID.

When you are sick with COVID, if you're not feeling well, you should probably rest if possible.

As people are returning to work we are seeing some changing data about exercise.

In the beginning there was a thought that exercise may actually prolong the course of symptoms and make long COVID worse.

There's been some newer data coming out showing that an exercise program can actually help with the symptoms of COVID and actually promote recovery.

And so as the science changes, our understanding and what we do and how we respond has to change as well.

I think I'd like to loop back to the health equity piece as it relates to kind of return to work and resting.

Because this is another piece where we see health inequities play out.

If you have a very physical job that doesn't really afford time off from work, construction, maybe you're working in a warehouse, maybe you have limited sick leave, maybe you might be working two jobs.

That person's return to work looks very different than somebody that is working as an analyst and can work flexibly from home and can rest when they need to.

And so I think we need to pay attention to that as well.

Health inequities as they play out, both in getting COVID, access to care, treatment, diagnosis with long COVID, but also accommodations in the workplace.

- Yeah, and there's some individuals, you know, build on what Francesca's talking about, after you exert yourself, you may be exceptionally fatigued over the next couple of days.

So in terms of a question, you know, listen to your body, you know, if you exercise or have a physically demanding job and you're wiped out the next day, then you're gonna want to take it easy.

So again, follow your inner messages.

- Mm-hmm.

So I was just gonna ask about the recovery, recognizing that our society doesn't slow down.

Are there any other recommendations that you would give our viewers regarding like, living in a society that doesn't slow down, but then COVID is gonna cause you to slow down or the need to slow down?

- This is a problem that our society has, right?

If we look to our European counterparts, for instance, shorter work weeks, longer parental leave, family leave, medical leave.

And we have, in some ways this is like a bigger problem of, as a society slowing down and taking a break.

But this is an instance where I think long COVID can make us think about how we treat our health and recovery and taking care of each other.

Because this isn't just about long COVID, this is about other health conditions, caring for each other.

And so taking that pause and letting ourselves recover.

People with long COVID do recover, but we need to afford them the time and the space and the resources to recover.

But again, not just about long COVID in that case.

- Yeah.

It's really hard to slow down.

We're in very fast-paced society, lots of demands.

But if you're somebody who has long COVID, if you have fatigue, post-exertional fatigue, chronic headaches, other types of problems, this is where if you're in school, talk to your teachers, talk to your educators.

If your at work, talk to people in the workplace, you may need special accommodations.

And long COVID is now something which is now recognized under the American Disabilities Act.

- [Kiara] Okay.

- But you know, Scott, we're hearing from people that they are having trouble, A, getting the diagnosis of long COVID and then B, actually qualifying for that disability.

And this is where healthcare providers can do a better job of, you know, making the clinical diagnosis in patients, but also ensuring that they have access to and able to file for those disability claims.

And then I think the workplace accommodations is a great point.

And you know, creating that awareness in the employer community so that they can know what to expect when somebody has long COVID and how to, you know, how they can help that person get back to work.

- Yeah.

And I like that you actually had some recommendations for like shorter work day or shorter work week.

Do you have any additional things that workplaces could do potentially to help?

- You know, we've been so focused on COVID for the past two and a half years.

You know, cases are going down which is great, but this is one of the things, this is an important next phase coming out of this pandemic.

So employers, schools, we need to recognize all that this is something that's real up to one in five, 1 in 10 individuals who've had COVID have long COVID and that this is a medical condition similar to other ones which needs accommodations.

- Only about 25% of patients with long COVID actually recover fully within five months.

In a recent study published in "Lancet," in Respiratory Medicine in April 2022, they looked at patients with what they call long COVID.

So what are the symptoms of long COVID?

Patients with long COVID have persistent fatigue, poor sleep, some of them still have shortness of breath, they can have joint aches, they can have muscle swelling.

I have a lot of patients tell me that they have a lot of brain fatigue or brain fog.

These studies were also found in "Journal of Women's Health" in March of 2022, that women were most likely to be affected by long COVID.

- Hearing you say, "We have to recognize that this is real," I think is probably one of the most important things that we can underscore.

So just that awareness piece, when we talk to patients who have long COVID, they repeatedly tell us that they feel gaslit by the medical community, by other people in the community, by employers being made to think that it's in their head, it's not real, it's anxiety from the pandemic, some untreated depression.

And so just that first layer of like long COVID is real, we still don't fully understand it, but we need to approach it in the way that we would approach other chronic health conditions.

- And to that point, when COVID first started, we heard a lot about the older generation.

It's gonna severely impact the older generation, not necessarily the younger generation.

Have you seen the same thing in the research regarding the younger generation in terms of COVID and long COVID.

- COVID, if it's, I don't know, has it taught us anything?

I mean, we could talk about all the things, all the lessons learned from COVID, but we saw that it did not discriminate against younger people and that, really, even young adults have been impacted by COVID.

The effect on pediatrics a little bit different.

But yes, there's healthy young adults that had seemingly mild COVID infection that now have long COVID.

- Wow.

- Yeah.

You know, in in the United States there have been more than 14 million children, you know, individuals less than 18 who have gotten COVID.

And even if 1 in 10 get long COVID, that's gonna be substantial.

Another thing that's interesting too is that even though we think of long COVID being more severe in people who've had severe COVID, people hospitalized, people with underlying medical conditions, which is true, some people who've had asymptomatic infections also can get long COVID.

And younger individuals often may have, they have symptomatic infections, but also not even realize that they have had COVID.

So that can affect individuals.

We hear reports of individuals who are great students, great athletes having had COVID really struggling afterwards.

- And so clearly you all know that this is an important topic.

There's an entire initiative that you're doing research for.

And so like what, what are your key goals?

What do you plan to get out of the research?

What do you hope to get out of the research?

How can you make the research accessible to more communities?

I know I just asked a lot.

(laughs) - Yeah, no, thank you for letting us talk about the Long COVID Initiative.

Part of our job really is to also translate the research that others are doing and to make it digestible so that it can be consumed for a wide variety of audiences.

We know that misinformation was rampant during the pandemic and this holds true for long COVID as well.

And so we want to take what's out there and put it forth for the community, for policy makers, clinicians, employers.

But we also have our own research that we're undertaking.

And we, in looking at the broader landscape, are trying to address gaps.

The NIH and the CDC, the federal government, has put a a billion dollars into the RECOVER Initiative to understand a lot of the clinical aspects of long COVID.

But we feel that there are some aspects that are being underdressed, particularly around health equity, economic and social impacts and impact on mental health.

And so we really have a focus on that aspect of long COVID and trying to address basically those unmet needs through looking at big data, using a data-driven approach.

So health claims data, but also in clinical trials.

And so we're rolling out an intervention looking at a digital health intervention so an app for your phone that lets you access peer support for long COVID.

So a community of people that have long COVID, but also a behavioral intervention to address some of the underlying mental health aspects of long COVID.

And we're about to launch that shortly.

- All right, so I was at CVS just recently getting a COVID test for my partner and there's one that you can actually upload to your phone.

I think it's to get your results and I didn't trust it, right?

And so in thinking about an app, how are you gonna get buy-in from the community to actually use the app?

I know the purpose and I know that it's gonna actually benefit us, but how do you get that buy-in.

- Any type of research that you do you need to get buy-in from the community and the people who will eventually be the research participants and I think that digital health is no different.

And this is, I think, the wave of kind of the future of healthcare.

You know, think about us wired in all the times to our phones, iPads, computers, and this is a way to let people kind of easily access healthcare in some ways.

So I think about digital health as breaking down health barriers because now you don't have to leave your house, you don't have to schedule an appointment.

And for conditions that have a lot of stigma attached to them, and I think long COVID is one, I think it reduces stigma because you can interact with people from the comfort of your own home and often in an anonymous format when we're talking about things like peer support.

But it lets us do it in a way that is moderated and supervised, in this case, under the aspect of a research study, but not quite the unfettered advice of, you know, social media forums and so striking that balance, But you're right, there is a lot of distrust of electronic platforms and digital health.

And so it is striking that balance in getting input from end users and stakeholders and people that we want to use this app.

So that's part of the process for sure.

- Is there anything you wanna add to that?

- You know, in terms of the things that we're looking at, you know, there are a lot of studies that are focusing on what are the medical complications, lung disease, heart disease, nervous system problems.

One of the important things that we're also doing, and Francesca touched upon this, what's the economic impact on this, you know?

So having surveys with individuals in the workforce, getting to the point you were asking about how do we make sure that the workforce has special accommodations when things are needing, how do we connect with educators.

And also, individuals who have long COVID, you know, as Francesca mentioned, some people mention that they have trouble getting acceptance.

What are they saying?

How are they telling us?

And how can this help guide policies?

- Mm-hmm.

Thank you so much for that.

- What is long COVID?

Long COVID is when that virus gets in you, you get Omicron, you don't even get that sick, but your body is experiencing changes from that virus that long after the virus is gone, those changes persist.

- Is there anything that I didn't ask you all that you think our viewers should know?

- I would like the viewers to know that we're working on this, that people do recover from long COVID and it feels like there's so much that we don't know right now.

When I talk to people about long COVID, I'm often answering, "That's a great question, if we only had our crystal ball."

But the science is moving forward and it's moving forward fast.

And there are a lot of resources being put in to understanding long COVID.

So if you are somebody that's sitting at home saying, "I think I might have long COVID," nobody knows what to do about it right now, every day new data and new research, new evidence is coming out.

And so I think there's a lot of hope around long COVID.

And it is also calling attention to some of these, some understudied chronic health conditions like chronic fatigue syndrome that for years maybe has been flying under the radar.

And so there is some good coming out of this and I think there is hope to be had around long COVID.

- Mm-hmm.

What about you?

Anything you want our viewers to know?

- You know, we're coming out of a brutal two and a half years that have disrupted so much of our lifestyles.

We've had friends that have been affected by this.

We've lost friends, we've lost relatives with this.

But let's keep our guard up.

You know, we're moving into a different phase and long COVID is something which is real.

So if you have long COVID symptoms, reach out to your doctor, reach out to your care providers because this is something that needs attention as much as when individuals had COVID before.

- Yeah, I'm actually happy that you all are doing research and that you have this initiative because the most that I've seen about long COVID is on Twitter and it's people very angry sharing their experiences, talking about their symptoms and saying that no one believes them.

And so you all doing this work is really beneficial.

How can people stay in touch so that they can continue to follow your work, but also for support?

- We have a website aboutlongcovid.org.

You can sign up for our newsletter on that website where we put out kind of what's late breaking in the realm of COVID.

We also interview experts in long COVID and the many aspects of.

You can follow us on social media, we are on Twitter and our email address is there.

We are always willing to entertain inquiries from the community and to hear what people perceive as the ongoing challenges around long COVID.

- I do have one question and I think it's really important and it's in alignment, it's around vaccinations.

So should we get vaccinated?

Should we not get vaccinated?

I know people think the pandemic's coming to an end, things are opening back up.

Will the vaccination help me against long COVID?

- Yes, you should get vaccinated.

We know that vaccination is protective against initial COVID infection and you don't get long COVID unless you've had COVID.

And even if you still do get COVID, even though you get vaccinated, you'll have a less severe illness and it looks to be protective against developing long COVID as well.

And so I've rolled up my sleeves multiple times at this point in time and encourage others to do the same.

- Considering getting COVID vaccine boosters, also, now's a good time to get your influenza vaccination as well.

- Yeah, and I think that there's word that the COVID booster may turn into an annual booster as well.

Do you have any information on that?

- You know, so there are a number of vaccines who get annual basis, flu is a good example.

I think the thinking is that that is gonna be part of our annual vaccination regimen.

- Well, thank you so much for answering my questions today.

We have actually run out of time, but you can watch past episodes anytime on watch.ri.pbs.org.

And be sure to follow us on Facebook and Twitter for the latest updates.

I want to thank today's guests, Dr. Beaudoin and Dr. Rivkees for their time and their incredible work.

We have started a tradition where we actually invite our guests to sign the wall, and so I'm gonna give you all some chalk.

- Okay.

- All right.

(gentle jazzy music) - All right.

(gentle jazzy music continues) (gentle jazzy music continues)