“The field is coming of age”: Long COVID researchers gather in Santa Fe to foster collaboration

Last week, leading Long COVID and infection-association chronic condition (IACC) researchers met in Santa Fe, New Mexico, for the field’s second Keystone Symposia meeting. They were joined by advocates, clinicians, and representatives from pharmaceutical companies for a three-day conference focused on sharing new research and building consensus.

Organized by researchers Danny Altmann, Hannah Davis, Akiko Iwasaki, and Avindra Nath, the conference built upon the first gathering in 2023, showing the many collaborations and connections that have flourished over the past two years and creating space for new ones.

Among the over 170 attendees present were a notable array of newer researchers to the field, displaying the growing interest in Long COVID and related diseases.

Altmann said in his closing remarks that the Long COVID field is “coming of age,” and this conference represents an important milestone as researchers “build a cohesive global community.” Long COVID has been studied extensively, with tens of thousands of papers over the past five years, but lacks approved treatments and widely accepted biomarkers. Many scientists have worked in silos, bound by their expertise areas or institutions — a challenge that this meeting sought to address.

“We were very determined to build a meeting working across those unhelpful silos, and I think managed it,” said Altmann in an email reflecting on the event.

“We all want to do the same thing, which is really not the case in every field,” said co-organizer Akiko Iwasaki in an interview, reflecting on the broad agreement among attendees that more collaboration is needed. 

Several of the conference talks and posters discussed current and future Long COVID clinical trials, building on what researchers have learned from the first generation of trials. Researchers also presented studies involving deep research into the disease’s underlying biology, sophisticated studies using mouse models, and studies on other IACCs outside of Long COVID and myalgic encephalomyelitis (ME), such as chronic Lyme and post-Ebola syndrome.

The event’s organizers also sought to include people with Long COVID in the meeting, through discounted access to the livestream as well as COVID-19 safety measures for those attending in person. Organizers required high-quality masks during all talks — though not during meals and poster sessions — and provided free KN95s. They also strongly encouraged attendees to test before the meeting, provided tests, and improved ventilation in conference spaces using portable air filters and by opening doors in breaks between sessions.

The safety measures helped protect the health of everyone in attendance. Organizers reported one COVID-19 case midway through the meeting; they are not aware of any further cases as of August 18, said a spokesperson from Keystone Symposia.

But there were some challenges for community members watching the event, as the Keystone Symposia organization — accustomed to hosting more private research meetings — clashed with a patient community that demands free access to critical information, especially given the vital roles people with Long COVID play in contributing to research through time, energy, and biospecimens.

“I left Keystone convinced people living with Long COVID have reason for hope — but only if clinicians, researchers, nonprofits, donors, regulators and patients around the world develop a specific, time-bound ‘global Long COVID road map,’” said Meighan Stone, executive director of the advocacy group Long COVID Campaign, in an email. 

She pointed to common asks among the scientists at the conference, like data sharing, and said that the field needs “coordinated international agendas” with “real resources” behind them to “yield treatment breakthroughs accessible to all patients,” including those from different countries and racial backgrounds.

I left Keystone convinced people living with Long COVID have reason for hope — but only if clinicians, researchers, nonprofits, donors, regulators and patients around the world develop a specific, time-bound ‘global Long COVID road map.’

Meighan Stone, Long COVID Campaign

Starting new collaborations

As Long COVID impacts every organ system, researchers at the meeting represented many specialty areas, from epidemiology to immunology — which is not common for most scientific conferences. Presentations of upcoming research papers highlighted different dimensions of the same Long COVID hypothesis; viral persistence, for example, was examined through in-depth testing of people’s samples, mouse model studies, and clinical trials.

Iwasaki pointed to a talk from New York University’s Jennifer Frontera about the risk of neurodegeneration — a process linked to cognitive diseases like Alzheimer’s — after SARS-CoV-2 infection as one example of the meeting’s broad attendance. “I would not have heard such a talk if I went to an immunology meeting,” she said. But at this meeting, “I get to hear from neuroscientists, behavioral scientists,” and many others.

Scientists took advantage of the gathering to talk to one another during Q&As, poster sessions, and long lunch breaks, which spanned three to four hours each day.

One major theme was sharing data and biospecimens. Scientists were inspired by existing collaborative programs like the Long-Term Impact of Infection with Novel Coronavirus (LIINC) study at the University of California, San Francisco (UCSF).

In his keynote address on Monday morning, LIINC lead researcher Michael Peluso noted that the program recently banked its 100,000th sample and that some samples had traveled around the world for testing at other research labs. He also discussed UCSF’s new VIPER initiative, which aims to “centrally develop a biomarker” by performing different tests on the same specimens and sharing data across participating labs.

Data-sharing has particular value for research into viral persistence: While many studies have found evidence of SARS-CoV-2 reservoirs in people with Long COVID, results tend to be inconsistent across different research groups and testing methods. At the meeting, scientists discussed sharing samples and results to build consensus for which methods should be used in diagnosing people and designing clinical trials.

For example, during a session focused on immunology studies, Iwasaki told attendees that her team at Yale planned to start publicly posting results from an autoantibody testing platform called HuProt (Human Proteome) and challenged other attendees to do the same.

Clinicians at the meeting also got in on the collaborative spirit. Stuart Malcolm, a physician and medical director of the online Long COVID and ME clinic RTHM, spoke with researchers to understand how he could immediately translate findings into treatment options for his patients.

“Why I’m excited as an ME/Long COVID doctor is because this [research presented] is reflecting all the pathology that I’m seeing in clinic. It’s reflecting the drugs, the medicines, the techniques that I use to help people,” he said in an interview. He appreciated learning more about different underlying biological issues and potential diagnostic tests that could inform his clinical work, he said.

Malcolm also appreciated simply being in a space with over 170 other experts who understand the urgency of studying and treating Long COVID. “I feel like, sometimes, I’m in the Twilight Zone” in other spaces, while at this meeting, every attendee is trying to address this massive challenge, he said.

Why I’m excited as an ME/Long COVID doctor is because this [research presented] is reflecting all the pathology that I’m seeing in clinic. It’s reflecting the drugs, the medicines, the techniques that I use to help people.

Stuart Malcolm, RTHM

Moving ahead with clinical trials

As Peluso noted in his keynote address, the 2023 Keystone Symposia meeting coincided with an editorial in The Lancet Infectious Diseases pointing out that there were very few clinical trials for Long COVID testing therapeutic interventions. Now, several early trials have concluded and many more are getting underway.

Two talks discussed the study designs for trials that have recently started: BioVie’s trial of the anti-inflammatory drug bezisterim, called ADDRESS-LC, and REVERSE-LC, a trial of the JAK inhibitor baricitinib, led by Wes Ely at Vanderbilt. Read more about REVERSE-LC and JAK inhibitors in our story here.

BioVie’s trial focuses specifically on addressing fatigue and cognitive impairment, said senior vice president Penelope Markham in her presentation, noting that other trials with bezisterim for Alzheimer’s and Parkinson’s have found it improved similar symptoms in those conditions. But the company has slightly expanded its eligibility criteria for the study, Markham announced: people who have had Long COVID for more than two years are now eligible to participate.

In addition, a poster in Tuesday’s session shared details about the recently started monoclonal antibody trial at Nova Southeastern University in Florida, testing the drug sipavibart. And in his talk, National Institutes of Health researcher and conference co-organizer Avindra Nath shared that he is working to develop a pilot study of the immunotherapy drug pembrolizumab.

The meeting also featured results from completed trials. During his keynote talk, Peluso summarized lessons learned from UCSF’s trial of the monoclonal antibody AER002, echoing his prior talks at PolyBio’s Spring Symposium and the Patient-Led Research Fund webinar. And Petter Brodin from the Karolinska Institute shared preliminary findings from the institution’s Paxlovid clinical trial. These findings are not yet public, but will be shared in a paper in the coming months, Brodin said. 

Plus, researchers Thomas Bunker and Jeffrey Novack presented a poster with findings from their trial of intermittent fasting for Long COVID, also shared in a paper in Nature Scientific Reports. 

Other discussions at the conference focused on the importance of decentralized models, which make clinical trials more accessible for people who are unable to travel to in-person appointments.

“Decentralized clinical trials are vital for Long COVID,” said Mario Duff, the associate director of product at Scripps Research.* Like others at the conference, she stressed the importance of accessibility in trials for people with energy-limiting diseases. Scripps recently launched a new decentralized trial initiative that will allow participants to partake in trials from home.

Results from upcoming Long COVID trials will continue to inform the development of new drugs and medical devices for the disease, Duff said. Conference attendees from biotech companies “are looking for collaborators,” she said.

Results from upcoming Long COVID trials will continue to inform the development of new drugs and medical devices for the disease, Duff said.

Several talks discussing research with mouse models provided other potential directions for future clinical trials. By modeling Long COVID in mice, scientists can examine specific biological pathways and their connections to specific symptoms. One such study, presented by Nadia Roan from UCSF, tested a drug recently developed by German researchers and found that it helped improve behavioral symptoms in mice, using machine learning approaches to study those changes.

In an email reflecting on the conference, co-organizer Danny Altmann wrote that the clinical trial talks were “strong sessions” and expressed enthusiasm for the trials that have recently launched. “But all this really depends on better biomarkers and stratification,” he said.

Learning from other IACCs

While the prior Keystone Symposia meeting about Long COVID was focused primarily on that disease, this year’s meeting broadened its scope to include other IACCs. Clinicians who had studied other IACCs prior to 2020 discussed how Long COVID’s emergence led to a surge of new research that may benefit this broader field.

The meeting featured talks and posters about ME, fibromyalgia, craniocervical instability (CCI), post-treatment Lyme disease, post-Ebola syndrome, and chronic symptoms following chikungunya infection, a virus that mainly spreads in Africa and Asia and is characterized by rheumatic joint pain.

One conference session, on Tuesday morning, focused entirely on IACCs outside of Long COVID. The event recognized researcher Jalene Velazquez with a Future of Science Fund award for her work on post-Ebola syndrome, which has found elevated markers of autoantibodies in people living with the disease.

Autoantibodies were also the subject of several Long COVID research talks — one example of many areas in which both symptoms and potential underlying biological causes overlap between different diseases.

In his talk discussing how Mount Sinai’s Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) approaches diagnosing and managing these conditions, center director David Putrino noted that different “triggers” can lead to similar disease states. He and his colleagues recently released a new manual for clinicians to treat IACCs, which he encouraged attendees to download, noting it is a living document that will evolve with feedback.

Discussing the results of a paper published in PNAS during the conference, author and ME researcher Maureen Hanson spoke about immune dysfunction in people with ME and cell-free RNA, genetic material that’s present outside cellular boundaries in bodily fluids, which she said may be used in diagnosing the disease. She also discussed ME’s long history, including a series of past “hidden pandemics” in the 1900s — with some people who are “still sick today, with no FDA-approved drug, no treatment that’s effective” following outbreaks decades ago.

Given this history, “we’re due for another ME/CFS outbreak,” Hanson said. “The problem is we wouldn’t know it occurred, because we would think it was a Long COVID outbreak,” she added, noting the need for diagnostic testing that can better differentiate between chronic diseases with similar symptoms.

While post-exertional malaise plays a large part in many cases of Long COVID, it was not a significant discussion topic outside of presentations on ME. The last Keystone Symposia conference featured a poster that would become a foundational paper on PEM, which showed skeletal muscle abnormalities in people with Long COVID and ME who experienced PEM.

Along with IACCs driven by viruses besides SARS-CoV-2, the conference featured one talk and poster about chronic illness following COVID-19 vaccination. Bornali Bhattacharjee, part of the LISTEN study at Yale University, discussed findings from a project comparing immune system markers across people with Long COVID and those with post-vaccination syndrome, which was shared as a preprint in medRxiv earlier this year. The group also shared a new preprint last week.

We’re due for another ME/CFS outbreak. The problem is we wouldn’t know it occurred, because we would think it was a Long COVID outbreak.

Maureen Hanson, Cornell

Challenges to access for the patient community

The Keystone Symposia organizers, both the experts who coordinated the meeting’s program and the hosting organization’s staff, sought to make it accessible to people with Long COVID. They were successful in bringing some people with lived experience to the meeting, but the process led to communication challenges.

Research meetings typically fall on a spectrum of public access, from completely free, open-access events to fully closed ones with no public information sharing. Many prominent meetings in the Long COVID space, such as PolyBio’s symposia and the UniteToFight 2024 conference, have been the former.

Keystone Symposia meetings are historically closer to the latter, as the organization is more focused on convening scientists and fostering collaboration. To that end, the organization has a media policy that prohibits sharing any new or unpublished results without the presenter’s permission. Scientists, particularly those earlier in their careers, may be apprehensive about such sharing, as scientific journals may be less likely to select a paper for publication if its results are already publicly available. 

But some conference attendees were unaware of this policy. On the first day of the meeting, several attendees live blogged talks on Twitter/X, including some posts with previously unpublished results.

The meeting staff then asked those attendees to take their posts down. One of them, an anonymous commentator who goes by “plague rat” on X, wrote that the organization “spammed [them] aggressively on multiple channels” and gave “very contradictory and limiting requirements.” The removal of posts led to online criticism from the Long COVID patient community, as people asked why research findings — for which study participants had generously contributed time, energy, and samples — were being restricted during an ongoing global crisis with millions affected.

Responding to this criticism, a spokesperson for Keystone Symposia explained, “Protecting unpublished research is critical to enable open sharing and discussion of emerging work that drives advances in scientific understanding, and to this point, medical advances for patients.” They also wrote that some researchers may “decline to share important work” without such protections in place, and that results discussed at conferences like this one “may often be preliminary and not ready for disclosure,” potentially leading to misinterpretation if shared ahead of peer review.

Some researchers presenting at the conference, such as David Putrino, Avindra Nath, and Maureen Hanson, specifically said their talks could be shared publicly, while others flagged that their results were unpublished or asked attendees not to take photos.

In response to high demand for the Long COVID conference, Keystone Symposia publicly released recordings of two sessions: a panel discussion about Long COVID mechanisms, diagnoses, and emerging treatments, and a wrap-up session in which organizers reflected on the meeting.

“We believe that patient perspectives will be increasingly important going forward, and that our organization can and should find ways to bring those voices into our meetings as participants,” the spokesperson wrote. 

“With that in mind, we as an organization can do a better job of communicating our conference policies, as the expectations of the patient community sometimes differ from that of scientific community, as this example shows.” The organization is also considering “supplementary programming” that would be “more flexible in terms of programming and information sharing policies,” they added.

The meeting also drew criticism for its high prices: the regular rate for in-person attendance was $1,295 per person, and the livestream cost $495. Stone, from the Long COVID Campaign, coordinated with the Keystone Symposia staff to fund 20 free passes to the livestream for Long COVID community members, aiming to increase diverse patient participation.

“Before I got Long COVID, I worked in HIV/AIDS and global development where even high-level summits without impacted communities are unthinkable,” Stone said. “With no FDA-approved treatments, a parent’s only hope may be bringing research from a conference to their child’s doctor. We must work backward from that urgent need. It’s not that patients don’t understand the business of science or researchers’ very real concerns — we just know there’s a better way, and we’re ready to build it together.”

Diana Schneider, a patient-advocate based in Germany who received one of the livestream passes, expressed gratitude to Stone and the Long COVID Campaign and admiration for the conference: “Well-chosen topics, state-of-the-art insights, timely info, and a sharp, engaged Q&A.” Patient access to events like this one is important because many people with Long COVID dedicate their (often limited) time and energy to reading, discussing, and participating in research, she said in an email.

“Access to events like the Keystone Symposium signals inclusion — and acknowledges the daily work and expertise patients bring to the table,” Schneider wrote.

Throughout the conference, researchers remarked that the talks and posters represented high-quality science, with each study moving the Long COVID and IACC fields forward. “This field has come from a standing start in 2021 to an understanding not too different to the past 100 years of learning about lupus,” Altmann wrote. “The trick now is to translate that knowledge into answers.”

“Long COVID researchers have proven, to an irrefutable degree, the scale and urgency of this global public health crisis,” said co-organizer Hannah Davis in their closing remarks. “We are converging on answers. There is a clear sense that the early work has been done, and we are beginning a new era of incredible, tangible advancement in the field.”

This field has come from a standing start in 2021 to an understanding not too different to the past 100 years of learning about lupus. The trick now is to translate that knowledge into answers.

Danny Altmann, Imperial College London & meeting co-organizer

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Betsy Ladyzhets and Miles Griffis both attended the meeting and contributed reporting and writing to this story.

*Editor’s note: Julia Moore Vogel, a colleague of Duff’s at Scripps Research, is a member of The Sick Times’ advisory board.

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