State releases first survey on how long COVID has impacted Minnesotans

[THEME MUSIC] NINA MOINI: Our top story this afternoon-- the State has released its first findings about how COVID-19 has impacted the long-term health of Minnesotans. The Department of Health survey showed that 4 in 10 people who responded had experienced prolonged symptoms, such as fatigue or brain fog. The survey had a limited number of participants, but it's the first major insight public health officials are getting into long COVID, almost five years after the pandemic began.

Here to talk about the findings of the survey is Kate Murray, the supervisor of the State's Long COVID Response. Kate, thanks for joining us today.

KATE MURRAY: Yeah, thanks for having me, Nina.

NINA MOINI: Long COVID is one of those things that it feels pretty mysterious still to me. It seems like a lot of people are suffering. A lot of people are not feeling heard when they feel that they are experiencing long COVID. And it's been five years for a lot of people.

So we talk about one or more symptoms that last a while after the initial COVID infection. But some people recover in months, and for some, it's been literally years. So how are you defining long COVID. these days?

KATE MURRAY: Yeah, you're right that it is challenging to define because it can really present differently in different people. But there is a definition that the National Academies of Science, Engineering and Medicine released last year, and we're referring to that one. And it's really symptoms that are lasting three months or longer after the initial COVID-19 infection. And they can impact systems all across the body.

NINA MOINI: Yeah, tell me about the main symptoms you've heard about with long COVID and how common those are and then how people can establish if it's related to COVID or not.

KATE MURRAY: Yeah, there are a lot of symptoms reported. Some early studies showed over 200 symptoms were described as potential long COVID. But we do kind of see these subsets of symptoms, potential subtypes that are emerging.

Some of the more common ones that we found in our survey as well were tiredness and fatigue. And this is not just needing a nap. This is fatigue that is really interfering with their daily lives-- shortness of breath, brain fog, and cough. And people also describe joint and muscle pain, headaches, sleep difficulty. And, of course, the loss of taste and smell.

NINA MOINI: So do you differentiate, too, for people who the symptoms lasted three months versus three years? Are there stages of long COVID or different kinds?

KATE MURRAY: Yeah, I do think there's probably a few different subtypes. And we say that three months is kind of the starting point for it. For some people it can also be relapsing and remitting, meaning it feels like it goes away for a while and then they experience a trigger like another COVID infection or a stressful life event. And then they can have a relapse of those symptoms.

But there certainly are people who were sick with COVID way back in March of 2020 who have had symptoms that have not gone away. And indeed, some have gotten worse over time.

NINA MOINI: Can you tell me a little bit about how you went ahead and conducted this survey? It seemed like not a ton of people. It's not the hugest sample size, correct? But it said that 4 in 10 of the people that you did talk to were experiencing long COVID symptoms. That seems like a lot.

KATE MURRAY: Yeah, it was a 6% response rate, which isn't huge. But it was still an important group of people we talked to that we got a lot of great information from. So MDH called people who had had confirmed COVID-19 infections in 2021 and 2022. And we had a highly trained and experienced team making the calls and conducting the survey, which was pretty lengthy.

And then we asked them about lasting symptoms and their severity and duration, as well as about their acute infection, whether they had returned to their baseline health after COVID, changes in ability to perform daily activities, and other experiences in health care, as well as background information like demographic data, vaccination status, social support, and a lot of other questions.

So although the response rate was low, and that does mean that the survey-- there's a lot of things it can't tell us, like the prevalence of long COVID in Minnesota. But it is still really important information. But that said, those percentages are among the respondents of the survey, so they're not scalable to the whole population of Minnesota. They might not also represent everyone who's experiencing long COVID.

NINA MOINI: But you're saying it's still important. Tell me how you will use these survey findings and the other data you collected.

KATE MURRAY: Yeah, absolutely. I mean, this is important for helping us identify some of our priorities in public health actions, as well as those of health care providers and understanding things like social service utilization.

It's also just really important to have some data behind what we've been hearing about from people with long COVID and their caregivers, from health care providers and others for years now. This is pretty consistent with what we're hearing in terms of how this is impacting people's lives. And it's also consistent with a lot of the national data that's been coming out.

NINA MOINI: And do you have any other national data that is giving you more of a peek into Minnesota that you would also refer to when trying to get the scope of how much long COVID exists here?

KATE MURRAY: Yeah, there are a lot of studies out there. We often look to some of the CDC and some of the other national studies that are pretty consistent in their trends. And those are indicating that there may be about 8% of people in Minnesota who have experienced symptoms of long COVID. And then a subset of them are still experiencing symptoms of long COVID.

Not everybody experiencing symptoms is going to be newly disabled from it. There are some folks where it's more moderate and just really annoying, but then eventually it does go away. But again, there is that really important subset of folks for whom this has been really debilitating and upended their lives.

NINA MOINI: Absolutely. And so that's people who have already experienced long COVID. What is your program? And through your work, what are you doing to prevent long COVID in the future? Because we know that people are still getting COVID.

KATE MURRAY: Yeah, absolutely. You're right. COVID is still with us and long COVID is still going to be with us as well. Our program is raising awareness about long COVID so that people understand this is something that can happen after an acute infection.

And indeed, this isn't a new phenomenon. These kinds of chronic conditions can happen after a lot of other acute infections. And we're also continuing to learn about the impacts in Minnesota through other follow-up surveys and studies, engagement with people with lived experience. And we're collaborating across health systems and sectors.

We also have a program of grantees and contractors on this great network of community organizations who are helping us assess the impacts of long COVID in communities, particularly those who are disproportionately impacted by the pandemic and health inequities.

NINA MOINI: If someone's listening right now, Kate, and they're thinking, I'm pretty sure I have long COVID, but I don't know, or maybe they went to the doctor and they didn't feel heard-- not saying that's happening in every case-- it's just what we're hearing anecdotally-- what would you recommend would be the next steps for somebody who thinks, I might have long COVID?

KATE MURRAY: Yeah, that's a great question. We definitely advise people to talk to a doctor or a trusted health care provider about their symptoms first. A lot of these symptoms overlap with other chronic conditions. And so there could be something else going on that that provider can help manage or treat. They may also be able to help manage some of their long COVID symptoms.

And we do have some great tools and resources on our website to help people prepare for those appointments and conversations with their providers. It can be really helpful to document the symptoms they've been experiencing and how long, if there's things that make them better or worse. And then we also have some resources just for support and other services that might be available beyond that clinical encounter.

NINA MOINI: Kate, before I let you go, I'm curious to know. So we're five years now from the start of the COVID-19 pandemic. With your position and within the Minnesota Department of Health, what would you like to see this landscape looking like a decade after COVID, in five years from now? Because we're just starting to learn about long COVID, it sounds like. What would be a successful next five years and decade removed from COVID for you?

KATE MURRAY: Yeah, that's a great question. I mean, certainly we hope that there are better treatments that come out in the next few years or sooner, that there's easier diagnostic tests and more straightforward ways of identifying people with long COVID because that can be a challenge for providers. And to continue getting a better sense of what the impacts are and how we can increase access to quality support for people with long COVID.

And certainly prevention would be-- we're public health. We would love to prevent this from happening. And so vaccination and people keeping up-to-date with their vaccines is an important way of reducing the risk of long COVID. And so keeping up with some of that, those preventive measures as well. And then hopefully just improving that care and support.

NINA MOINI: Kate, this is so important. Thank you so much for coming on with us and for your time.

KATE MURRAY: It's my pleasure. Thank you for having me.

NINA MOINI: That was Kate Murray, the Long COVID Response Supervisor at the Minnesota Department of Health.