As many governments shutter and defund their Long COVID programs, Minnesota is ramping up.
In this episode of Still Here, co-host Betsy Ladyzhets talks to Kate Murray (Minnesota Dept. of Health) and Terri Wilder (#MEAction) about Minnesota’s recently launched Roadmap to address Long COVID and other post-viral chronic conditions, and how their broad coalition led to a human-centric plan forward.
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RSSLinks mentioned in this episode:
- Minnesota’s Statewide Roadmap to Address Long COVID and Post-Viral Chronic Conditions
- Long COVID Funding Opportunities – MN Dept. of Health
- Resources: Long COVID A Post-COVID Condition – MN Dept. of Health
- #MEAction: meaction.net
- Past stories from The Sick Times on Minnesota’s Long COVID program:
Jump to a specific part of the transcript:
Intro
[Theme music begins]
Melanie Marich: [00:00:00] Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times.
Melanie Marich: And I’m Melanie Marich, the podcast producer for Still Here.
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase [00:00:30] the Long COVID crisis.
Betsy Ladyzhets: But here at The Sick Times, we’re bringing you the latest news and commentary that matters to the Long COVID community.
Miles Griffis: Without pandemic denial, minimizing, or gaslighting.
[Theme music ends]
Melanie Marich: The government isn’t doing anything about Long COVID. That’s the refrain many of us have been saying for years. I know I have. But working at The Sick Times makes me ask sharper questions. Which government? Where? What counts as something? [00:01:00] Are we just looking at Long COVID, or are we going wider and talking infection-associated chronic conditions?
Hopefully, reading and listening to our work makes you ask these questions too. Today, we’re showing you one answer, not the answer, but we’re gonna take a look at one very interesting example of a government doing a thing about Long COVID. Quite a few things, in fact. Minnesota State government is one of the few state governments with a dedicated and funded Long COVID and “post-viral chronic [00:01:30] illness” program, including a full-time staff, grants, research, working groups.
In a time where lots of programs across the country and around the world have been shuttered or lost funding, Minnesota is actually ramping up their efforts after their launch in 2023. Last month, Minnesota’s Long COVID program published a statewide roadmap to address Long COVID and post-viral conditions.
It is a massive manual that lays out a map for supporting individuals and communities [00:02:00] navigating this reality, and it lays out recommendations for all kinds of people: legislators, healthcare providers, schools, community organizations, caregivers, benefits navigators, pretty much anyone who might come in touch with an individual with an infection-associated chronic condition, and the individual themself.
The folks at Minnesota’s Department of Health worked with a coalition of partners that included doctors, researchers, activists, members of community [00:02:30] organizations, and of course, individuals living with Long COVID and post-viral conditions. Two of those people joined Betsy on the pod for a conversation about how this roadmap came to be and what Minnesota wants to share with the rest of the world.
To learn more about anything mentioned in today’s episode, as always, links will be in the episode description. One quick fact-checking note before we start. One of our guests mentions how the program’s funding was threatened a few years ago. It was actually just last year in the spring of 2025. I know, time [00:03:00] moves funky for all of us these days.
And again, you can learn more about this and much more in the links in our episode description. Okay, here’s that conversation.
Interview with Terri Wilder and Kate Murray
Terri Wilder: So I’m Terri Wilder. I use she/her pronouns. I am coming to you from Minneapolis, Minnesota. I’m the chair of #MEAction Minnesota Chapter, and I’ve been diagnosed with ME since March of 2016, but probably have had it all of my life
Kate Murray: And I’m Kate [00:03:30] Murray.
I am the program manager and unit supervisor for Long COVID and Post COVID Conditions at the Minnesota Department of Health. Uh, my pronouns are she/her. I am in my office in Saint Paul today. Uh, but I’ve been in this position for about four and a half years, and happy to be joining from the health department.
Betsy Ladyzhets: Yeah, thank you so much both for coming on the podcast. So we’re here to talk about Minnesota’s Long COVID and Post-Viral Chronic Illness [00:04:00] program. Um, it’s a unique program in the United States. We’ve covered it a little bit at The Sick Times, as it’s one of the only programs that has actually received funding from the state government to do Long COVID and related disease research.
Um, so for listeners who aren’t familiar with it, Kate, I was wondering if you could talk a little bit about just, like, how this program came to be.
Kate Murray: This program, the roots of it really started way back in 2020 when epidemiologists and others at the health department recognized that people in [00:04:30] Minnesota were being exposed on a mass scale to a novel pathogen, and it really started bringing together interest holders during that time.
Uh, and then shortly thereafter, we started using some of the CDC COVID-19 and health disparities money that all states got as sort of seed money for the Long COVID program, and that is when I started. Uh, we sort of expanded beyond thinking about data and disease monitoring to thinking of a more programmatic side, getting information on the [00:05:00] website, um, and so, uh, started building partnerships as well, and convening our guiding council of healthcare providers.
And then in 2023 was when we got state funding to continue and expand the work. Um, that federal funding, uh, ended eventually, but we have that funding, and officially were founded in statute, um, as of 2023. So we are continuing forward with those efforts, and this roadmap was a big milestone for us, and [00:05:30] also looking to start expanding our scope a bit beyond just Long COVID to think about other post-viral infection associated chronic conditions .
Betsy Ladyzhets: So Terri, what has your involvement been with this program, and how have you s- kind of seen it grow and change as someone who’s been, as you said, involved with ME advocacy for a long time, before 2020?
Terri Wilder: Yeah. So I lived in Minneapolis, Minnesota from 1992 to 1996, and then I left, and then I came back in [00:06:00] 2022. And I must have gotten winds from someone about this program and Kate, and I think at the beginning, I probably was an agitator to Kate, um, reaching out and probably, you know, being the activist hat, uh, person, just complaining and wanting to know what was happening.
Um, but I think that morphed into a better working [00:06:30] relationship. You know, I think we had a pivotal moment a couple of years ago when we weren’t sure if the program that Kate manages was gonna keep their funding. Um, so we kinda went on high alert, showed up at the state capital because we did not want to see this program go away.
I mean, we are very aware of how lucky we are here in Minnesota to, to have a dedicated program. I mean, it is not common for this to be happening. Um, so we kinda went all hands on deck and [00:07:00] showed up, and thankfully, that, that money was secured and continued. Um, and then, I don’t know, I guess Kate reached out to me maybe sometime last year and shared a little bit about this project and asked if I wanted to be involved, and I said yes.
Um, I think I also provided some names of other folks that I wanted to make sure that were involved, um, particularly folks who are not white. Um, I [00:07:30] wanted to make sure we had folks who were Black, indigenous, or other people of color, and I also wanted to make sure that we had folks from the LGBTQ+ community, and particularly the trans community.
I think if folks are familiar with me, they may know that I have a long history in HIV and LGBTQ+ health, um, activism, and so I was, you know, intent on making sure that we were gonna have some kinda key community members [00:08:00] that got to give input because they’re often the folks who get the brunt of these dysfunctional- Uh, systems.
Betsy Ladyzhets: Yeah, definitely really important. Um, so I know that roadmap was just released recently after, I believe, about a year’s worth of work. Um, so I’m curious if there’s anything that you all would want to share from that process, as well as some key recommendations from the roadmap that you’re really excited about or that you think might have, like, a big impact.
Kate Murray: We started bringing in our steering [00:08:30] committee about late last summer. Uh, and Terri was on that steering committee, um, as well as, um, our assistant commissioner and folks from healthcare and community clinics who are serving and representing a lot of marginalized communities, um, people with expertise in, um, nonprofits and wraparound services, um, educating early health professionals, um, and working on clinical workflows.[00:09:00]
So we really tried to, to make this as engaged of a process as we could the whole way through, really going beyond engagement. If you think about that spectrum of, like, community engagement versus, like, going all the way to power sharing, we really wanted this to be, like, a co-design process and involve a lot of people with lived experience.
So that included early on doing listening sessions, focus groups, interviews with people with these conditions and some caregivers as well, and then bringing all of that back [00:09:30] to our steering committee to help us shape what some of the topic areas would be and some of the priorities. So it was, you know, a long process, so I think the, the recommendations are sort of the centerpiece of the roadmap.
There’s a ton of other content in there. It is about, like, 136 pages long or something like that. Uh, we have some various more bite-sized versions of the recommendations in there, and MDH is definitely planning to release some more [00:10:00] digestible and audience-specific products kind of spun off of the roadmap in the coming months.
So I just wanna say stay tuned for that. If you are overwhelmed when you look at the roadmap, it’s okay. I am, too, and I have sat with it for many months. So, um, it’s sort of a kitchen sink document But right now, the, the three areas that the recommendations fall within, and they’re really overlapping, it’s just more they’re organized that way, so we had a way of organizing them.
But they revolve around public [00:10:30] life, around formal assistance, and around health outcomes. Uh, there’s a lot of recommendations that we’ve been hearing from the community for years we knew would be needed, things like raising awareness among the public, as well as educating healthcare providers. Um, some of the recommendations are kind of shorter term things we could do.
Others are really high-level systems or policy change and are probably going to take years to [00:11:00] implement, but we wanted to make sure we captured all of that in there. So I think it’s hard for me to pick favorites in terms of recommendations. I think there’s a lot of really important ones in there. I think the big thing I’ll say is that it’s not a roadmap for MDH.
It’s a roadmap for people across all sectors and communities. MDH definitely plays a role in most of the recommendations. We’re not necessarily the ones to lead all the recommendations, and [00:11:30] in some cases, we really don’t have, like, the right connections, the right power to implement those.
Terri Wilder: Yeah, I mean, I think I would first start by saying that I hope folks notice that a couple of times, um, in the document, we recognize disability justice, um, as a framework, um I really wanted that in there as a frame, um, because I think it is so, uh, relevant [00:12:00] to our lives, um, as we navigate living with these chronic diseases.
And, you know, I think one of the key pieces of disability justice principles is intersectionality, and that we do not live, you know, single-issue lives, you know? Um, and, you know, I think another important p- principle is the leadership of those most impacted. I mean, you know, through this process, we had people that have these diagnoses, or even if they don’t have these diagnoses, they are experiencing [00:12:30] these symptoms that were part of this process.
So in terms of kind of like these buckets of public life and formal assistance and, and health outcomes, um, to no surprise, because I’m a social worker by training, I was very passionate about a lot of the things that have to do with helping our community get to resources. So under public life, you know, we need navigators, you know, we need case managers.
For some folks in our community, [00:13:00] you know, they were fully employed. They were, you know, having a life that had energy and lots of activities, and they’d never had to think about social services before. This is completely new to them about having to ask for this kind of help. And so, you know, really making sure that there was navigation.
You know, there’s some great quotes in this document. Um, there was one quote that I actually was just reading earlier today. Somebody was talking about like, “I’m getting a divorce. My parents got divorced.” [00:13:30] Like it– like the stress of living with a chronic disease like this that is stigmatized and feels like nobody cares about, it breaks down relationships.
So, you know, under public life, there was a lot of conversation about like we need support spaces. We need support groups that are accessible. Um, we need peer workers that can help navigate with us because they understand what’s going on. You know, I think under the, the heading of formal [00:14:00] assistance, um, you know, just having our chronic diseases recognized as a disability, um- People talked about buddy programs, wanting to have buddy programs, which is, you know, very connected to my history in HIV.
Buddy programs were very popular in the ’80s and ’90s in the HIV world. Folks also talked about telehealth, the need for telehealth, and then it’s gotta be reimbursed, um, and it needs to be kind of a norm because our folks [00:14:30] can’t leave their homes, can’t get out of their bed. Um, so I think there was some really great pieces in there about, um, what our real needs are and kind of what could make navigating chron- you know, living with chronic disease a little bit more easier.
Betsy Ladyzhets: Yeah. I mean, I really like that point about on encouraging people to read the whole thing. I also really liked when I was reading it how aware it is of the different types of [00:15:00] audiences who could be reading and engaging with this document, and how specific some of the recommendations get. Like, it’s not just saying we need a public awareness campaign, although we do, but it’s also saying, like, we need to be educating these specific groups of people in this specific way, whether that’s, uh, community health workers, or, like, navigators, or, like, people who are working within disability benefit systems or whatever the case may be.
Because really all of those folks need to be more aware of and capable of helping people who have Long [00:15:30] COVID, and people who have ME, and other infection-associated chronic conditions. So, um, that was something I liked about it. Um, I guess in terms of not just next steps for this specific roadmap, but kind of looking ahead more broadly, obviously Minnesota is just one state.
Um, and, you know, I think at The Sick Times, we often try to give people guidance or ideas. So I’m curious for both of you, maybe Terri you can start with this, like, what [00:16:00] lessons would you take from this process, or how would you want to see people who are interested in advocating for similar work in other places, other US states or, like, internationally in different levels of government?
Um, what, what would you like them to know, or what would you like them to take from this?
Terri Wilder: Yeah. Well, I mean, I’ll start by saying that, like, you know, we have a very curious community, and th- th- folks outside of Minnesota came to the event that we just had a week and a half ago. Yes. And, [00:16:30] um, you know- I am part of a network of ME Action chapter leaders, and it just happened to be right before the Minnesota Department of Health event to kind of release this to the world.
We had a meeting, and I said, “You guys should come to this. Please keep in mind it’s very Minnesota-focused, so just remember it’s a bunch of Minnesotans. You know, folks sound differently, use different words.” You know, [00:17:00] as a person who’s Southern who has an accent, like I have the nerve to say Minnesotans have an accent.
But, you know, you come, and they did because they’re curious, and they wanna know. Having this document out in the world, it’s something you can bring to your department of health and be like, “Hey, I just went to this, you know, virtual event, and…” Or even if you didn’t, and Minnesota put together this roadmap.
Yes, it is huge. Yes, it [00:17:30] took them a year to do it. Yes, they have resources. But I’m wondering if we could actually have a conversation about maybe doing a mini roadmap for, I don’t know, I’m just picking, for the state of Oregon. Or if we could at least start talking about, like, how can we do this when we don’t have a lot of resources?
Is there somebody on your staff that, like, kind of handles chronic diseases? Would they be willing to meet with a bunch of activists with lived experience to start having this conversation? [00:18:00] So it’s a conversation starter, even if your state doesn’t have the resources like Minnesota does. Like, you know, Kate, this is Kate’s job.
Kate gets paid full time, and I’m assuming has great benefits, and, you know, has other team members. I get that other departments of health don’t have that. They don’t have a Long COVID or ME section, but they, but they are a department of health, and they do have a commitment to public health, and they have [00:18:30] someone that chronic diseases falls under their job title.
So it’s a matter of figuring out who that person is and just start the conversation because you never know what might happen. So there are some kind of low-hanging fruit, kind of low-cost, no-cost things that people might be able to do by just introducing this roadmap document to the staff at their departments of health
Kate Murray: Absolutely.
And I hope that’s, you know, we want it to be used that way. We tried [00:19:00] to propose some actionable ideas that take, it’s the whole spectrum of what resources and time it might take, but there definitely are some ideas in there that really wouldn’t take that much staff time and, uh, funding. It’s just having somebody dedicate a bit of time to it or interest.
But the partnership, the relationship piece is so core to really any effective public health initiative. I think what we found, the more we talk to people, you encounter more, more people [00:19:30] who have experienced Long COVID or a related condition, or know somebody who has ME/CFS. I mean, just talk to people and I bet you’ll find somebody who has a personal interest in that, and sometimes that’s also a way to start building those bridges.
So it is just broaching the conversation. It doesn’t have to be implementing the whole thing. You know, take one recommendation and see if you can run with it. See if there’s something that already exists that you can build on. Um- I think there’s a lot of great starting [00:20:00] points in there. Minnesota’s always happy to be a resource for other state health departments, and we do get contacted by a lot of them.
Working those networks and those connections is definitely how we make a bigger impact.
Betsy Ladyzhets: Is there anything else you would wanna quickly say or anything that you want folks to look forward to in terms of, like, further updates from Minnesota Health Department?
Kate Murray: I think a couple takeaways, you know, one, and Terri spoke to this, too, the importance of involving people with lived experience, however you decide to move these [00:20:30] things forward.
They are often the experts in their experiences. They may have read more literature than their healthcare providers at this point. Um, so crucial to include those folks, not just as, like, an afterthought consultant, but really as co-leads in the process. And that no one group has all the answers. There’s a lot of great ideas out there, but in order to kind of help the helpers, the people within these systems, [00:21:00] they also have to be at the table.
I hear so many great ideas about educating healthcare providers or changing this policy, um, impacting this system, but we need people from those systems involved because they know what their barriers are within those systems and where their leverage points are. So it really has to be a collaborative effort going forward where we have champions from within all sectors and communities.
Um, we have a current grantee [00:21:30] cohort who will b- be done at the end of June 2027, so we’ll have a new round of grants going out and other contracting opportunities. We really will be designing a lot of our forthcoming funding opportunities around implementing pieces of the roadmap. So, uh, we have a webpage where we’ll post that information when it’s available, but it just…
It feels like it’s a kind of a new dawn and a new era for our program, and we’re really excited about it and very energized by the interest and, um, the [00:22:00] participation we’ve had throughout this whole roadmap process. It really feels like we’ve got this coalition and we’re m- ready to move forward together.
Terri Wilder: Yeah, I mean, I just wanna say that, you know, we’re in a particularly stressful political climate right now. I mean, I think that’s the understatement of, of, of, of the, the century. Um, and it may… You know, like, in general, our community feels like it’s hard to get attention, hard to get people to, you know, move forward on things that are [00:22:30] concrete.
Um, and, you know, in this day and age, it’s just getting even harder, um, with everything that’s coming out of, of, you know, DC that trickles down to our lives. And I think, you know, I think the one thing that would be important to remember is that You know, don’t try to do this by yourself. You know, try to work in [00:23:00] collaboration across movements.
I mean, each of us have like 25 different diagnoses under our main diagnoses. Connect with folks, divide the labor, don’t let ego get in the way, um, to really try to see if there’s a way that you can do something like this in your own state, in your community. And, you know, there’s so many things in that document, like Kate mentioned, that you could just pick one thing.
You know, I, I [00:23:30] wanna just, uh, kinda elevate one thing that we haven’t talked about. You know, we talked a lot about, you know, healthcare and access to social services and all these kinda things. Um, and Kate, you might remember this, but I was like really, um, strong in my opinion that the word cure should be in this document Um, and it might feel a little off to some people because we don’t have, a lot of us don’t have a biomarker, [00:24:00] or we don’t have an FDA-approved tre- treatment, but we should be thinking about cure.
We have to think about that. You know, in the HIV community, there’s a lot of con- um, conversation about cure, and I’m like, we should be talking about cure, too. Like, I don’t want just an FDA-approved drug. I want this out of my body. Like, I want my life back. Um, and so I want folks to kind of look at this document in kind of the [00:24:30] whole sphere of, and spirit in which we kind of pursued this work, that it’s not just about our day-to-day life, but it’s also about our future when we don’t have to deal with these chronic diseases anymore.
And that’s my hope, is that because many of us had a viral trigger, that one day some brilliant scientist, um, will figure out how to just, like, nip this in the bud where we don’t even have to worry about it anymore. And that might be, [00:25:00] sound naive to people, but that is where I am in my world of interacting with scientists that, like, I want a cure.
Melanie Marich: To learn more about Kate and Terri’s work, check out the links in our episode description. Now, here are this week’s research updates.
Research updates
Miles Griffis: Long COVID can change the brain in ways that are commonly associated with Alzheimer’s. In a new study published in Alzheimer’s & Dementia, researchers identified an enlarged region of blood vessels in the brain, as well as [00:25:30] reduced blood flow to the brain.
This matches the findings of other recent studies that found changing cerebral blood flow in people with Long COVID. This study compared people with Long COVID to people who had, quote, “recovered after a SARS-CoV-2 infection.” Yet even those who recovered had similar reduced cerebral blood flow. The authors say these changes could suggest a potential link for future dementia risk.
Betsy Ladyzhets: The National Institutes of Health just launched phase two of their Long COVID Adult Observational Study. [00:26:00] The study will be housed within RECOVER, which is the NIH’s flagship Long COVID research program. Phase two will include 5,000 people with Long COVID and controls who are taken from the initial cohort of 15,000.
The NIH announced funding for the second phase back in December 2024
Miles Griffis: Despite extensive research showing that Long COVID is a biological disease and not related to deconditioning, the Veteran Affairs Office of Research and Development is going forward with a potentially harmful behavioral trial for [00:26:30] Long COVID.
The study will recruit 150 veterans who will undergo weekly workout and nutrition classes, comparing them with a control group of participants who will have stretching and educational classes. Post-exertional malaise impacts many people with Long COVID, and it can worsen with exercise, yet this trial’s description does not mention PEM at all.
Outro
[Theme music begins]
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we’ll continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone still here. [00:27:00]
Melanie Marich: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website. Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.
Our theme song for this episode is The Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m Melanie Marich, and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick [00:27:30] Times co-founders.
Thanks for listening.
[Theme music ends]
