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Long COVID remains a mystery: 5 Things podcast

On this special episode of the 5 Things podcast: In the beginning, people suffering from what is now called long COVID were forced into the shadows. Their symptoms – debilitating tiredness, lung issues and non-specific pain – didn’t seem to fit together. Over 3 years into the pandemic, the medical community is still grappling with the question of treatment. Why has it remained such a mystery? Dr. Francesca Beaudoin, Director of the Long COVID Initiative and Chair of the department of epidemiology at Brown University, joins 5 Things to explain.

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Hit play on the player above to hear the podcast and follow along with the transcript below.  This transcript was automatically generated, and then edited for clarity in its current form. There may be some differences between the audio and the text.

Dana Taylor:                 Hello and welcome to Five Things. I’m Dana Taylor. Today is Wednesday, September 6th, 2023, and this is a special episode of Five Things. In the beginning, people suffering from what is now called Long COVID were forced into the shadows, their symptoms, debilitating tiredness, lung issues and non-specific pain didn’t seem to fit together. They ping ponged from specialist to specialist. No one seemed to want to treat all of their symptoms. Over three years into the pandemic, the medical community is still grappling with the question of treatment. Why has it remained such a mystery? I’m joined today by Dr. Francesca Beaudoin, the director of the Long COVID Initiative and Chair of the Department of Epidemiology at Brown University. Dr. Beaudoin, thank you for joining me.

Dr. Francesca Beaudoin:         Thank you so much for having me.

Dana Taylor:                 So I want to start with a recent analysis that came out in the journal Nature Medicine that showed that people who have had even a mild case of COVID are at a heightened risk of lung problems, fatigue, diabetes, and other conditions associated with Long COVID for up to two years. First, what is Long COVID?

Dr. Francesca Beaudoin:         I pause because it’s still hard to answer that question. I can give you the definition that the World Health Organization gives us, which is new or persistent symptoms three months after an initial COVID infection lasting for two months or longer. And those symptoms can take a variety of forms. And my initial hesitation is because two and a half, three years later, we’re still really grappling to understand and accurately define Long COVID.

Dana Taylor:                 Well, for people who suffer from this disease, it can be isolating and devastating. I recently saw a tweet on X, formerly known as Twitter, by one sufferer who wrote, “Thanks to Long COVID, I’ve lost my independence, my fitness, my sense of identity, my friends, my dreams.” Is it the wide array of symptoms that are causing so much suffering? Is it the isolation and loneliness? How do you advise patients to navigate all of the layers at play here?

Dr. Francesca Beaudoin:         There’s a few things to unpack there. The burden of symptoms for some people is really high. And I think a commonality is the persistence of symptoms, lack of recovery after the initial COVID infection, and then a component of interfering with your day-to-day life activities. Importantly, that’s actually not a part of the official definition, but I think when we think about people impacted by Long COVID, what they’re telling us is they have trouble going to work. They have trouble interacting with their family, doing things that they enjoy. I’ve talked to people who have trouble getting out of bed every day, and that to me is pretty staggering and remarkable. And then there’s other people who can’t go to the gym anymore, and we might say, “Well, no big deal. Going to the gym is a luxury,” or whatever, but for that person, going to the gym is a big part of their quality of life.

                                    And so even that level of impact is important and we need to be thinking about. And then there’s people maybe with more mild symptoms, persistent loss of taste and smell. Taste and smell are important to us in our enjoyment of food and other things. And so even that impacts people’s day-to-day quality of life.

Dana Taylor:                 Well, in the beginning, a lot of Long COVID patients complained about being bounced around from specialist to specialist with doctors not wanting to treat all of their symptoms. Why did it take so long for the medical community to reach a consensus that this condition is real and patients need specialized care?

Dr. Francesca Beaudoin:         There’s a few things here. One is that there’s not a clear test to diagnose Long COVID. And so for a lot of people, this ends up being a diagnosis of exclusion, as we sometimes say in medicine, meaning ruling out other things. And that’s actually part of the definition is that there’s not something else going on because Long COVID can mimic a lot of other health conditions. And so there is a piece of this that is a diagnostic challenge. Then there’s a component that it does involve multiple systems throughout the body. If you’re having both extreme fatigue, cognitive dysfunction, “brain fog” and shortness of breath, who should deal with that? I feel strongly that a person’s primary care provider should be integrally involved in the care so they can coordinate across specialists, but it’s not clear who owns the care of Long COVID. And so it begs the question of where should people go for quality multidisciplinary care about Long COVID? There was a recent commentary, I believe in the New England Journal of Medicine, highlighting this and calling for funding for centers of excellence for Long COVID care.

                                    And you see that centers of excellence play out with other chronic health conditions, and it’s a place where people can receive high quality evidence-based multidisciplinary care. And so perhaps there is a role for centers of excellence in Long COVID that doesn’t exist yet, and it doesn’t help people today with Long COVID. So a lot of frustration there in both the medical community and in patient community. And I think part of why we are seeing more now than in the past is the large burden of the pandemic in general affected a lot of people. And then there’s probably something very specific about this infection and this virus that led to all of these downstream consequences. And we also have the ability to capture some of this through data in a way that we couldn’t before. And so it’s interesting that we didn’t know about it. It shouldn’t have been a surprise, and this is a good place to focus as we think about future pandemic preparedness, the consequences, the ripple effect once the initial infection is stabilized or resolved.

Dana Taylor:                 So there’s treating it and then there’s the question of whether or not it’s curable. Is it?

Dr. Francesca Beaudoin:         There currently is not a cure for Long COVID. This is an area of interest and focus. Currently, we’re spending a lot of time talking about symptom management. The National Institutes of Health just launched a series of clinical trials as part of the recovery initiative with the goal of trying to facilitate recovery of Long COVID. The majority of people have some recovery, but there is a subset of individuals who have persistent symptoms and have not gone back to their “baseline” before having COVID.

Dana Taylor:                 Well, I wonder how prevalent is it? How many Americans have had it?

Dr. Francesca Beaudoin:         Hard to know exactly. There are some good estimates. The current estimate from the Centers for Disease Control, I believe, is that about 6% of Americans, which is a huge number, would satisfy criteria for Long COVID. The important thing to keep in mind there since we’re talking about nearly one in 20 US adults, is that the symptoms vary quite a bit. And so that’s not one in 20 people have completely debilitating Long COVID not leaving their house, but that encompasses the range of people who are still having some lingering effects from their initial COVID infection. Even if that is an overshoot of the number, this is real. The burden is high. A lot of people are affected. We’re talking about millions and millions of people.

Dana Taylor:                 So who’s getting Long COVID? Are there groups that are more at risk?

Dr. Francesca Beaudoin:         Anybody can develop Long COVID. There’s cases of young healthy people in their late teens, early twenties, developing Long COVID. But we’ve come to understand that people who have a more severe initial infection are at higher risk, vaccination appears protective, the number that … There’s some consensus around is that 30% reduced risk of Long COVID if you’re vaccinated. And then studies seem to demonstrate that women and older adults are more vulnerable to developing Long COVID and also having persistent symptoms.

Dana Taylor:                 So has the disease itself changed over these past three years or just our understanding of it?

Dr. Francesca Beaudoin:         Probably a combination of the two. I think the data is constantly evolving, emerging, but I think there’s some indication that earlier variants, so early in the course of the pandemic, that you were probably more likely to develop Long COVID with those initial versions of COVID versus later. Now we’re seeing some escalation in COVID-19 cases in this tale of summer 2023. We won’t know the downstream effects of that for months, and so it’s always this moving target. But I think that we’ve seen some evolution in both the risk of developing Long COVID from those viruses, but then other things have changed too, right? We’ve introduced vaccination, we have Paxlovid, changing variants, and so it’s very hard to disentangle all of these things that are happening simultaneously over time. If you were to develop COVID-19 today, what is your risk of Long COVID? I don’t know that I can give you the answer to that.

Dana Taylor:                 So what are the most important steps that people with Long COVID should regularly do to take care of themselves and to recover?

Dr. Francesca Beaudoin:         This is where a close relationship with your primary care physician, primary care provider is important, somebody that knows you and that can work with you in the steps to A, getting a diagnosis. If there are things like true disability, if need for work-related accommodations, pursuing some of that, engaging and making referrals to specialists as needed for symptom management, potentially giving access to clinical trials. This relationship with somebody that knows you and that can do appropriate diagnostic tests to make sure that there isn’t something else going on, because that would be unfortunate if we just started lumping all new health conditions and saying like, “Oh, it’s Long COVID. It’s Long COVID.” Low thyroid levels can look very similar to Long COVID, and that’s just one thing, but there are many, many more. There’s two things going on. There’s being able to emotionally, psychologically handle having a chronic health condition. And we could say that with diabetes, with cancer, with every other thing, and then there’s pursuing the best course of treatment and evidence. There’s a lot of parallels between Long COVID and other chronic diseases.

Dana Taylor:                 Well, does it exacerbate underlying conditions or precipitate other health problems?

Dr. Francesca Beaudoin:         That is a concern, and I think a real concern. There are studies reporting that people are likely to get a new dementia or Alzheimer’s diagnosis in tandem with Long COVID. And is that because Long COVID is exacerbating those underlying cognitive impairments or is it because now someone’s going to the doctor more because they’re having new health problems, and while they’re there, other concerns, other health conditions get unmasked. Is it because they’re in the healthcare system that we’re finding these things out or is it because Long COVID is causing it? And really hard to separate those two things.

Dana Taylor:                 Well, I don’t think that there’s anyone who isn’t ready to move past Long COVID, but it is what it is and it’s still here. Do you think that there’s enough awareness of Long COVID across the general public?

Dr. Francesca Beaudoin:         Awareness is better, I think, especially in this age of politicizing health, healthcare, medicine, misinformation, disinformation; it’s really important to provide good information that people can understand. Stories and narratives are more powerful for people than numbers sometimes. If we had a close family member that was impacted by Long COVID and we watched it with our own eyes, that’s much more believable to us than quoting these prevalence numbers and millions of people. And that doesn’t touch home. That doesn’t resonate with us. And so I think it’s really important when we’re communicating information and thinking about how do we get the message across in a way that builds trust and is accurate, and actually helps improve public health. So health for the population, but also for the individuals involved.

Dana Taylor:                 Well, what’s been the most promising development in the fight against this disease?

Dr. Francesca Beaudoin:         I think we have a much better understanding of the what and the who than we did early on. We still need to do much better in the way of treatment. People have very limited treatment options. I mentioned the RECOVER Initiative. I would be remiss in saying the RECOVER Initiative has been a little bit of a disappointment and still waiting to see headline results coming from a more than 1 billion investment by US taxpayers. And there’s been media attention around that lately and I hope that that attention is actually some fuel to continue doing the studies that need to be done. And there are new studies coming down the pipeline. I am more of an optimist than a pessimist, and so I’m hopeful that we will make improvements, but this is the nature of learning as we’re going. And same thing with vaccine development during the pandemic and building the tracks as the train is barreling ahead. Vaccination is protective in developing initial COVID infection and appears to also be, even if you get COVID, makes it less likely to develop Long COVID.

Dana Taylor:                 Thank you so much for joining us, Dr. Beaudoin.

Dr. Francesca Beaudoin:         Thank you so much for having me.

Dana Taylor:                 Thanks to Cherie Saunders for her production assistance. Our senior producer is Shannon Rae Green, and our executive producer is Laura Beatty. Let us know what you think of this episode by sending a note to Thanks for listening. I’m Dana Taylor. Taylor Wilson will be back tomorrow morning with another episode of 5 Things.

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