Members of the Patient-Led Research Collaborative (PLRC) and grantees of their $5 million Patient-Led Research Fund will be presenting updates about their work in a webinar today. The virtual event will feature talks sharing new findings about the underlying biology of infection-associated chronic conditions (IACCs), as well as discussions about how patient engagement leads to better research.
Founded in spring 2020 by people who developed Long COVID in the pandemic’s first wave, PLRC has played a vital role in drawing scientific attention to Long COVID and identifying top research priorities. The organization published foundational papers defining Long COVID, such as one in The Lancet’s eClinical Medicine in 2021 that identified over 200 symptoms. In addition to its own research, PLRC now supports other promising studies through its Patient-Led Research Fund, publishes a journal of patient-generated hypotheses, operates a registry to connect people with Long COVID to studies, and more.
The webinar today is set to include presentations from PLRC members like Gina Assaf, Hannah Davis, and Megan Fitzgerald discussing the organization’s work, along with innovative Long COVID researchers like Liisa Selin, Alain Moreau, and Michael Peluso. Planned talks will discuss different Long COVID and IACC pathobiologies, such as microclots, immune system dysregulation, and the gut microbiome, as well as potential treatments.
As we have done for similar events hosted by the PolyBio Research Foundation and National Institutes of Health, The Sick Times’ team will be following the presentations throughout the afternoon in a live-blog format. Check this article and our social media pages to find our takeaways from the presentations, and look out for a recap on our podcast in the coming days.
A few scientists will be sharing preliminary findings from studies that have not yet been published. For those presentations, our live blog will only include high-level summaries so as not to disclose results that are still in the process of scientific review.
— Betsy Ladyzhets
Table of contents (click to jump to each section):
- 1 p.m. ET: Opening remarks, Gina Assaf & Hannah Davis
- 1:15 p.m. ET: Skeletal muscle abnormalities in Long COVID, Braeden Charlton
- 1:30 p.m. ET: Fibrinaloid microclot quantification in plasma from people with Long COVID and ME/CFS, Caroline Dalton
- 1:45 p.m. ET: Altered T cell responses in Long COVID (PASC) and ME/CFS, Liisa Selin
- 2 p.m. ET: Alterations in tryptophan metabolism in the gut microbiome of people with ME/CFS and Long COVID, David Esteban
- 2:15 p.m. ET: Nothing for us without us: aligning research funding with patient priorities, Megan Fitzgerald
- 2:45 p.m. ET: T cell dysregulation revealed by single-cell profiling of ME/CFS and Long COVID patients, Roshan Kumar
- 3:00 p.m. ET: Surgery for foraminal stenosis in ME/CFS, Per Sjögren & Bo C. Bertilson
- 3:20 p.m. ET: Systems biology approaches to uncovering disease mechanism and drug repurposing for Long COVID, Wenzhong Xiao
- 3:40 p.m. ET: Epigenomics of Long COVID: Insights, breakthroughs, and emerging hope, Alain Moreau
- 3:50 p.m. ET: Characterizing non-restorative sleep in post-viral disease to advance intervention innovations, Janet Mullington
- 4:05 p.m. ET: Monoclonal antibodies in Long COVID: what needs to happen next, Michael Peluso
- 4:20 p.m. ET: Panel: Advancing Long COVID research: The power of patient-centered science and patient-driven funding
- 4:40 p.m. ET: Closing remarks, Hannah Davis
1 p.m. ET: Opening remarks, Gina Assaf & Hannah Davis
PLRC co-founder Gina Assaf opened the webinar by giving a brief history of the Patient-Led Research Fund, which began in 2022 when there were very few biomedical research studies. “We saw the huge gap in research that included [patient voices] in a meaningful way,” she said.
With support of the biotech giving fund Balvi/Kanro*, they were able to launch the fund from idea to their first grant in just 8 months.
“There were 15 patient panelists with Long COVID and other infectious onset chronic conditions,” PLRC co-founder Hannah Davis said, sharing an overview of the details of the fund and how studies were selected. “We prioritized areas of research identified by patients as being important to them, followed by a rigorous panel review and process to select grant applications.” The patient panelists who helped select the grants had expertise in a wide assortment of expertise, from immunology to molecular biology to infectious disease.
“We believe that it’s important to create movement and urgency in the field, and required that the teams make their scientific findings public, providing transparency and communication by sharing their research outputs,” Davis said.
1:15 p.m. ET: Skeletal muscle abnormalities in Long COVID, Braeden Charlton
Braeden Charlton, from Vrije Universiteit Amsterdam, presented on his team’s research which was shared in the pre-print server Medrxiv this spring, about skeletal muscle abnormalities in Long COVID.
His team compared the skeletal muscles of healthy controls who underwent strict bedrest for 60 days and compared them with people with Long COVID and myalgic encephalomyelitis (ME).. They found that people with Long COVID and ME showed signs of poor oxygen extraction. They also found that those with Long COVID and ME tended to retain their muscle mass, whereas deconditioning results in severe muscle atrophy, or muscle wasting.
Lastly, his team found that Long COVID and ME can result in poor mitochondrial function. In contrast, deconditioning is “primarily the loss of mitochondria.”
“These are…the most evident arguments we have against this idea of deconditioning
playing a significant [role] in either Long COVID or ME/CFS progression,” Charlton said. In the pre-print, his team concluded, “these findings indicate that the lower exercise capacity in patients with Long COVID and ME/CFS is not solely due to physical inactivity.”
— Miles Griffis
1:30 p.m. ET: Fibrinaloid microclot quantification in plasma from people with Long COVID and ME/CFS, Caroline Dalton
Dr. Caroline Dalton from Sheffield Hallam University talked about her team’s research developing a method for counts of quantifying fibrinaloid microclots, or tiny blood clots, in platelet-poor plasma and investigating those counts’ use as a biomarker.
Dalton’s team looked at a group of plasma samples taken in 2022: people never infected with SARS-CoV-2, people who were infected and recovered, people with Long COVID, and people with a SARS-CoV-2 infection in the last four weeks who recovered. They also compared a control group of samples with plasma from people with Long COVID, people with ME, and vaccine-injured people.
“A problem, if you’re thinking about microclots as a biomarker, is that you could feel very unwell, but not have raised microclots,” Dalton said. While as a group, people with Long COVID had higher microclot counts, about half of those did not have high microclot counts. Additionally, she says her group saw vaccine-injured people have the highest microclots when compared to samples from controls, people with Long COVID, and people with ME.
The data were published in a medRxiv preprint last spring and the team is planning to use proteomics to investigate the content of microclots across different types of plasma samples.
1:45 p.m. ET: Altered T cell responses in Long COVID (PASC) and ME/CFS, Liisa Selin
Liisa Selin from University of Massachusetts presented on research building on her prior work looking at CD8 T cells in response to viral infections. Prior to the PLRC funding, she had already been studying people with ME, which allowed her lab to incorporate Long COVID as an area of research.
“What we think is happening is an aberrant response to an immunological trigger, like infection, and this leads to a dysregulated immune system and subsequent T cell dysfunction,” she said, specifically pointing to the overactivation of CD8 T-cells.
For example, her team found an increased ratio of two different types of T cells in people with ME overall, with the same true of people with Long COVID. Once dysregulation occurs, she added, a lot of different compensations like the increased T cell ratio begin occurring, which could help explain the “heterogeneity of this disease,” or why the disease can present differently in people.
— James Salanga
2 p.m. ET: Alterations in tryptophan metabolism in the gut microbiome of people with ME/CFS and Long COVID, David Esteban
David Esteban, a biologist at Vassar College, has been researching how disrupted gut microbiomes can cause ME and Long COVID. While his study on people with ME is finished, a similar study on people with Long COVID is still in progress. His team started by using the Solve Together ME registry to collect stool samples, symptom surveys, and medical history questionnaires.
Their hypothesis was that people with ME and Long COVID may have dysregulation of aryl hydrocarbon receptor (AHR), an issue also found in other diseases including multiple sclerosis and rheumatoid arthritis. They did find AHR dysregulation in the participants, as well as lower gut overall microbiome diversity in people with ME compared to controls.
PLRC member Tess Falor said the decentralization of the study was a big win for patients who experience post-exertional malaise or who might not live close to major cities where these kinds of studies are usually conducted. It also has potential to inform treatments, as doctors can address AHR elevation and gut microbiomes can be modified.
2:15 p.m. ET: Nothing for us without us: aligning research funding with patient priorities, Megan Fitzgerald
PLRC member Megan Fitzgerald gave an overview of why it’s important to include patient priorities in research funding. She said the goal of patient-led research is to bridge the gap between people with Long COVID and the professionals who are researching and treating the disease.
“Our expertise is honed by our own lived experiences,” Fitzgerald said. “We have unique insights that are crucial to ensure scientifically valid study design.”
PLRC aims to create a “virtuous cycle of Long COVID research,” in which actually beneficial and meaningful testing leads to more beneficial and meaningful testing. If you study pathobiology, you get more studies on pathobiology, she said. PLRC imagines a future in which patients are trusted partners.
— Heather Hogan
2:45 p.m. ET: T cell dysregulation revealed by single-cell profiling of ME/CFS and Long COVID patients, Roshan Kumar
Roshan Kumar from HiFiBio Therapeutics shared his research studying Long COVID and ME at the level of a single cell. His lab works with Liisa Selin’s at the University of Massachusetts, he said, in examining immune dysregulation. Their goal is to identify “disease-specific cell states,” or markers of dysfunction at the cellular level that are unique to Long COVID and/or ME. The group has made progress on this, specifically noting T cells that show signs of being continually activated and exhausted.
Kumar noted that he has personal experience with IACCs: his wife has had ME for many years, he said, and he knows the common experience of “going to all these doctors, getting many tests results back that are basically normal,” and wondering how that could be possible for someone who is facing debilitating symptoms. This research could lead to biomarker tests that show what is, in fact, going wrong “under the hood” of someone’s immune system, he said.
3:00 p.m. ET: Surgery for foraminal stenosis in ME/CFS, Per Sjögren & Bo C. Bertilson
Per Sjögren and Bo C. Bertilson from the Karolinska Institute in Stockholm, Sweden discussed their ongoing research into cervical spinal surgery for people with ME. The two researchers are also affiliated with Stockholm’s Bragée Clinics, which has a long history of treating people with ME.
While a small number of people with ME have experienced great relief in symptoms from this type of surgery, research has been very limited and the surgeries are controversial in the patient community. Sjögren and Bertilson are examining the procedures in a pilot program, aiming to closely follow a small number of patients after they receive surgery and track changes to their symptoms as well as any safety issues.
The project has moved slowly due to challenges with review board approvals and recruitment, and is looking for additional participants. To participate, people must have diagnoses of both ME and radiculopathy, or pinched nerve, and be able to attend in-person visits in Stockholm.
— Betsy Ladyzhets
3:20 p.m. ET: Systems biology approaches to uncovering disease mechanism and drug repurposing for Long COVID, Wenzhong Xiao
To identify potential treatment candidates for Long COVID and ME, Wenzhong Xiao and his colleagues at Massachusetts General Hospital are using a variety of large datasets. Their project uses a network medicine approach, taking advantage of similarities between ME, Long COVID, and other diseases to find drugs currently being tested for another disease that might also work for the target conditions.
Based on the analysis, there are many drugs that researchers might trial for Long COVID and ME, Xiao said, including drugs targeting different potential underlying causes of symptoms. He aims to bring these potential study areas to other researchers and pharmaceutical companies that could run trials. Plus, at the same time, Xiao surveyed people with ME and Long COVID to ask about treatments that have helped alleviate their symptoms; results from that survey were recently published in PNAS.
This type of research is vital for people with Long COVID because it offers evidence that doctors can cite when offering their patients off-label treatment options, patient representative Chimére L. Sweeney said.
3:40 p.m. ET: Epigenomics of Long COVID: Insights, breakthroughs, and emerging hope, Alain Moreau
Alain Moreau, from the University of Montréal, discussed his project called Multi-Omic Approaches to Solve Post-Acute COVID-19, or MOSAIC. The project focuses on epigenomics, a field that studies how genetic material can be modified without changes to gene sequences themselves. Specifically, Moreau and his colleagues have identified two types of changes to genes that happen with Long COVID and ME: one called methylation and one involving micro RNA.
The researchers have developed a testing panel based on these changes that can potentially be used both to diagnose ME and predict the trajectory of someone’s symptoms, Moreau said. In particular, he noted that certain changes to micro RNA are consistent even across people who developed ME after different viral infections. “That might explain why different viruses lead us to ME/CFS symptoms,” he said. Additionally, Moreau and his colleagues are looking at potential drug targets that could potentially prevent ME symptoms from developing.
— Betsy Ladyzhets
3:50 p.m. ET: Characterizing non-restorative sleep in post-viral disease to advance intervention innovations, Janet Mullington
Janet Mullington, from the Harvard Medical School Division of Sleep Medicine, presented preliminary findings on sleep disturbances in people with Long COVID. Sleep problems are among the top five symptoms of Long COVID, Mullington said, and her research suggests about one-third of patients report issues with sleep.
Mullington’s team observed that people with Long COVID have a variety of issues with sleep, such as less total sleep time and less time spent in rapid eye movement (REM) sleep, which is an important part of the sleep cycle. She also noted that people who experience insomnia prior to Long COVID are more likely to develop Long COVID. Her team is now in search of a biomarker for non-restorative sleep.
4:05 p.m. ET: Monoclonal antibodies in Long COVID: what needs to happen next, Michael Peluso
Michael Peluso from the University of California, San Francisco (UCSF) shared results from his team’s clinical trial of a COVID-19 monoclonal antibody called AER002 for Long COVID. Peluso also discussed this study in the PolyBio Research Foundation’s Spring Symposium in May, but this talk included a few updates from the group’s continued analysis of their results.
This trial found that AER002 was safe for people with Long COVID, but did not lead to significant improvement in symptoms: there was no significant difference in health scores between the treatment and placebo groups at 90 days after infusion. Discussing why these results may have occurred, Peluso suggested that this might have been the wrong drug (as it was designed for SARS-CoV-2 variants that circulated earlier in the pandemic), wrong participants (i.e., people who did not actually have viral persistence that the drug would’ve addressed), or the wrong approach (suggesting perhaps more doses and/or combining monoclonal antibodies with other treatments might be more successful).
Peluso wants to see future clinical trials target both viral persistence and other hypotheses, he said. He noted the need for trials to select participants in more targeted manners, to test treatments in combination, to try newer monoclonal antibodies like pemivibart (made by Invivyd) and other new approaches. In addition, Peluso shared that a scientific paper with more detailed results from this study will be available later in the summer.
— Heather Hogan & Betsy Ladyzhets
4:20 p.m. ET: Panel: Advancing Long COVID research: The power of patient-centered science and patient-driven funding
Lastly, Julia Moore Vogel,* senior program director at Scripps Research and PLRC member, led a panel discussion on the importance of centering patients to advance research into Long COVID and related diseases. The panel highlighted the PLRF model’s advantages over traditional funding as “desperately needed” in the current landscape of biomedical research and spoke about what Long COVID research may look like in five years. Vogel was joined by Anisha Sekar, Janet Mullington, Roshan Kumar, Liisa Selin, and Hannah Davis.
Sekar said involving patients in research was crucial: “If patients are involved in studying the research question and study design, that means that we’re focusing on big questions, big swings, things that are actually going to lead to treatment.” She emphasized that patients need to be fully involved as co-creators of studies from the beginning, not just at the end.
Looking into the future, the panelists spoke about biomarker studies, exploring more combination therapies for Long COVID — like antivirals and immune modulators tested together — as well as the role of machine learning in advancing research. Selin, who has worked in the ME field for fifty years said, “I’m still here fighting. I am a glass half full person, or I wouldn’t be here.”
4:40 p.m. ET: Closing remarks, Hannah Davis
Davis closed the meeting by thanking the attendees and grantees, stating that PLRC was “proud to have hosted this event that framed and contextualized the high speed, quality and impact of research” both supported by patient expertise and for an audience of patients.
Going forward, PLRC aims to expand their patient registry and to fundraise $2 million to support a second round of grants, Davis said, emphasizing that PLRC needs imminent funding to continue work past this summer.
“Overall, we hope that this webinar shows a clear vision of what we can achieve,” Davis said.
— Miles Griffis
*Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.
*Julia Moore Vogel is also a member of The Sick Times’ advisory board.
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