“A morale boost”: Looking ahead to the 2025 Keystone Symposia Long COVID conference with Hannah Davis

In August, leading Long COVID researchers will gather in Santa Fe, New Mexico for a major conference on Long COVID and other post-acute infection syndromes. The meeting, organized by Long COVID experts and hosted by the nonprofit Keystone Symposia, follows a similar conference in 2023 at which scientists presented novel, exciting studies.

Managing editor Betsy Ladyzhets caught up with Hannah Davis, one of the meeting’s co-organizers and co-lead of the Patient-Led Research Collaborative, to look ahead at the conference. Davis discussed what it’s like to plan a major research meeting, how this conference will be different from the prior iteration in 2023, what she’s looking forward to, and more.

In this uncertain, often disheartening political moment, the conference will be “a morale boost” with new research presentations — including clinical trial results — and hopes for the future, Davis said. This interview has been lightly edited and condensed for clarity.

Listen to the audio version of this story on our podcast:

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Betsy Ladyzhets: Thanks for doing this, Hannah. What backstory would you want people to know about the Keystone Symposia Long COVID and other post-acute infection syndromes meeting that’s coming up in August?

Hannah Davis: This is the second Keystone on Long COVID that’s being held. The last one was now two years ago, in 2023. This is a really large-scale meeting bringing together researchers in the field of Long COVID and other infection-associated chronic conditions. It’s really focused on top-level research. Really good, new, advanced [research], from people who are trying new things, people who are showing new results.

The last Keystone was where we heard some of the best research for the first time. [That meeting gave] a lot of hope to the community, and strengthened connections between researchers. And we’re hoping that this year is going to be the same.

BL: Wow, I can’t believe the last one was two years ago. For some reason, I thought it was last year, but time really just passes.

HD: I know, and we’ve been organizing [this year’s meeting] for quite a long time, too. 

BL: What were some of those papers or those studies that first came out in the meeting in 2023?

HD: Definitely hard to remember all of them. But the one that I remember the most was Rob Wüst’s paper, which was an incredible paper looking at PEM [post-exertional malaise] really seriously, was out at Keystone as a poster. It was, I think, the first time that it was presented in any kind of public capacity, and that paper went on to just be a milestone in the field. PEM is so understudied, and just showing researchers that it can be studied, can be studied well, and can concretely find these metabolic changes and tissue damage, and amyloid plaques after exercise in Long COVID patients was just an enormous deal.

The last Keystone was where we heard some of the best research for the first time. [That meeting gave] a lot of hope to the community, and strengthened connections between researchers. And we’re hoping that this year is going to be the same.

Hannah Davis

BL: I know they just came out with a new paper [shared as a preprint], too, so they keep building on that research.

How did you get involved with organizing the meeting for this year? What’s the process been like so far?

HD: I was invited by Akiko Iwasaki to co-organize. The other two [co-organizers] are Avi Nath and Danny Altmann in the U.K. We’ve been working on it for over a year now, and we basically have been working with the Keystone organizers to pull this together. A lot of the work we were doing is selecting research, suggesting research, making the different categories for the sessions, and trying to pull together a really solid list of presenters. Hopefully, presenters will, for the most part, have new research to share at Keystone in August.

BL: That makes sense. I can imagine that’s a tough task, given all the Long COVID research that’s going on.

HD: Oh, my God, yes, it’s impossible. There’s no way to pick favorites.

BL: How do you think about what to include? I imagine it’s also tricky to figure out what group or what scientist is going to have something new potentially to share, right?

HD: Yeah, that’s a big part of it, especially because at this point, we picked the list [of speakers] over a year ago, and so predicting two years into the future was difficult. A lot of the people on our program are people who have been working in this field for years now … They have research actively in progress, and will have something to share. 

I’ve also been keeping an eye out on some of the newer teams that emerged [in the last year] with really exceptional papers, and have tried to invite them to submit an abstract. And so there’ll be, hopefully, some new faces, too, who will be able to connect with the existing network.

One of the biggest differences between this conference and the last conference is, there are a lot more people doing clinical trials who will have results they’ll be able to present in August. One of our focuses in creating the agenda was inviting a lot of those folks to speak and share results. That’s very exciting to me. The field as a whole needs a lot more focus on clinical trials generally, and to communicate with each other about the challenges, like outcomes selection, and learnings from the process of [running trials].

The field as a whole needs a lot more focus on clinical trials generally, and to communicate with each other about the challenges, like outcomes selection, and learnings from the process of [running trials].

Hannah Davis

BL: That’s something that we at The Sick Times have been watching and trying to cover, as we start to see results come out from trials. Definitely a lot to talk about.

I noticed also that the prior conference in 2023 was more focused on Long COVID, whereas this one explicitly includes other infection-associated chronic conditions in the title and the description. I wanted to ask about that, and why it’s important to broaden that a little bit.

HD: [It’s important] for a couple of reasons. A lot of the researchers in Long COVID do work in associated conditions, and the results from other conditions that are also infectious-onset are deeply relevant to Long COVID and vice versa. So we wanted to expand the understanding of infection-onset illnesses as a field. 

Also, in this climate, COVID is very fraught. I think we have a lot to gain by working with other groups where some of the findings are the same. Learning and understanding those connections is important scientifically, and then banding together is very important socially.

BL: That’s something else I was going to ask about, too, in terms of how this meeting can help foster more collaboration — or particularly, as you were saying, inviting some of the researchers who might be a bit newer to the Long COVID space, or maybe who are working on Long COVID but are less familiar with some of the associated conditions, to meet and talk and see what each other’s groups are working on. What are some of the things you’re looking forward to in that area?

HD: The early researchers and new researchers are an important component of all this. …  It is so important, for any disease, for researchers to understand that there’s a career in it if they want to pursue that route, and that it’s sustainable, and that it’s something they can invest in.

It takes so long to do good research, especially — you’re not going to put something out in a couple of months. It really needs to be in a sustained time period. So that’s one of my big hopes [for the meeting], is that it will get new researchers excited about investing in this field.

BL: Even at a time where there’s maybe not so much government investment.

HD: Yeah, definitely.

BL: What are the connections [between the meeting] and other work that you and the Patient-led Research Collaborative are doing? How have you or other colleagues with lived experience been involved with planning? Or, how do you see this connecting to [other projects like PLRC’s research fund]?

HD: The benefits of having patients involved [with organizing this type of meeting are] similar to having patients involved in a study. The motivations for staying up-to-date on research are very different when you’re a patient: you’re doing it to basically try to save your own life. You’re trying to see what treatments you can try. You’re trying to see what tests need to be done. And for sure, the best researchers are also staying up-to-date on research. But there are some patterns that patients can bring from lived experience and the patient community, and questions we have … are a tremendous wealth of information and ideas.

Some of the most searched-for queries that lead to our personal PLRC website are around the hypotheses journal we put out, [which includes scientific articles about] deeply detailed fields of research that have predominantly not been studied externally. And then, of course, [patient involvement in this conference] has the classic addition of researchers being able to tangibly meet patients and see and hear how their research has positively affected patients’ lives.

BL: Do you expect others from PLRC, or others whom you all have worked with, or other patient researchers will be there? I know sometimes it’s tough for people to travel…

HD: Yeah, I know of at least a few [patient researchers] who are hoping to go, if COVID precautions are in place. So I am hoping that we’ll be able to implement those. And I definitely would love to see a strong community presence, I think it’s really important to this whole process. 

The motivations for staying up-to-date on research are very different when you’re a patient: you’re doing it to basically try to save your own life. You’re trying to see what treatments you can try. You’re trying to see what tests need to be done.

Hannah Davis

BL: I know there are different options for people to submit research if they’re not already part of the group of scientists who will be presenting. What would you want folks to know about that, if anybody reading or listening to this is interested in submitting an abstract or applying for one of the scholarship options? 

HD: Submitting an abstract is the primary way, if someone has a proposal or an abstract that they want to present. And the deadline is coming up… 

BL: Yeah, [the deadline for] short talks is next week, May 13. Same for scholarships.Then there’s a bit more time for posters, [that deadline is] in July.

HD: Everyone who’s interested and has new research to present — by new research, I mean something that’s, within the last six months or upcoming — I would say they should absolutely consider applying. We could really use a wide breadth of new ideas and new topics.

BL: There are scholarships and on-demand viewing, is there anything else you’d want to say about those options?

HD: The on-demand option, which is much more affordable than the in-person option, will allow people to see the recordings of the conference after they’ve been processed. That is deeply helpful for anyone who is unable to travel or can’t make those dates. And, of course, that’s a lot of the Long COVID population. So I definitely hope that others know that that’s an option.

BL: What are you most looking forward to with the meeting?

HD: For me personally, I’m still predominantly house-bound, so it’s going to be the first time I’m traveling for Long COVID work in five years. I haven’t met so many of these people [I’ve worked with] in person. I’m really, really looking forward to that, [there are] so many people I just deeply love and respect, and I’m really excited to be face to face.

And also, to see new research. For all of us right now, it’s such a dark time where a lot of what we’ve gained over the past couple of years now feels at risk. It’ll be a morale boost to see just how much is still going on and to tangibly see some hopes for the future. 

BL: Definitely. I know, covering some of that in terms of the threats to funding and all of this stuff, it’s been helpful to see how much has been done already on some of these projects. Like when Miles and I wrote about the RECOVER pathobiology grants a few weeks ago, [we realized] some of these are really exciting studies that were almost done, and luckily, that funding was restored thanks to community advocacy.

So we’re still going to get [results] — like, I don’t know, maybe some of those will be [presented] at this meeting, or later in the year, or next year. And there’s so much other research that has been going on, that hasn’t been shared yet. It’s helpful to think about, like, these things take a long time.

HD: Yes, exactly. And at least in terms of the lineup, [I know] that a lot of these people already have presented exceptional research, and what they are going to show will be equally exciting. That is something to look forward to.

For all of us right now, it’s such a dark time where a lot of what we’ve gained over the past couple of years now feels at risk. It’ll be a morale boost to see just how much is still going on and to tangibly see some hopes for the future.

Hannah Davis

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Learn more about the Keystone Symposia meeting on Long COVID and other post-acute infection syndromes on the event website. It will take place in Santa Fe, New Mexico from August 10 to 13. Upcoming deadlines:

• Scholarships (for graduate students and post-docs) and short talk abstracts: May 13
• Early registration: June 24
• Poster abstracts: July 17

Betsy and Miles from The Sick Times will be attending the meeting and look forward to covering research presented there. To get in touch and coordinate interviews, please reach out to us at editors@thesicktimes.org. 

Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.