Episode #35: Leading the Long Game for Long COVID Research with Dr. Julia Moore Vogel

Dr. Albert Rizzo: Welcome back to Lungcast, the monthly respiratory health podcast series from the American Lung Association and medical news site HCP Live. I'm your host, Dr. Albert Rizzo, Chief Medical Officer of the American Lung Association.

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Today's interview features a leading figure in long COVID research—a still emerging field that is encumbered by established terminology and diagnostics as patient cases increase. Dr. Julia Moore Vogel, the Program Director of the All of Us Research Program at Scripps, joins us to discuss the evolving space of long COVID research—from pathophysiology to screening methodology—as well as her own early contributions to defining the disease and mitigating its impact.

Before we get into today's topic of long COVID, in the review article published earlier this year in Nature Reviews Microbiology, can you please tell our listeners a bit about your background, your current role at the Scripps Institute, and your involvement in the All of Us Research Program and other genomic projects? How did this lead to you and your colleagues completing such a comprehensive look at long COVID?

Dr. Julia Moore Vogel: Sure. My career has been pretty non-linear, so I'll tell you a little bit about it. I started with my PhD in computational biology, which at the time was kind of a new field combining data analysis, math, and biology. It gave me a great foundation in how to analyze large-scale datasets. After that, I ended up getting an MBA. My idea was that I could work at the interface of science and business because so much of science is discovery that ends up not getting translated to really help patients. I wanted to be at that interface to move discoveries along for wider application.

For the last five years, I've been working at Scripps Research heading up our All of Us Research Program efforts—a program that engages at least a million folks across the U.S. to share information about their health for a broad database researchers worldwide can use to study different diseases. It’s a disease-agnostic cohort, already used by thousands of researchers in the U.S., with international expansion underway.

Then, in 2020, I contracted long COVID myself and wanted to use those skills to contribute to this massive need for long COVID research. We’re doing some of our own research, which we can discuss later, but we also saw a need for a comprehensive review because so much literature is coming out, it’s hard for anyone to stay on top of.

Eric Sopel and Hannah Davis, two of my co-authors, are among the most up-to-date on the literature, and Lisa McCorkle and I also helped with the review. The four of us worked together to put it together, and we’ve been really surprised by the reception—it was downloaded over 100,000 times in the first week, showing the need for this resource and how difficult it is to synthesize information about long COVID, especially for the medical community. We hope it helps researchers, clinicians, and patients alike.

Dr. Albert Rizzo: No question, there’s a need. I only hope this podcast gets listened to a hundred thousand times! It’s great having you on. One issue surrounding long COVID has been the lack of consistent terminology and the definition of what the condition looks like. Can you tell us where things stand at this point?

Dr. Julia Moore Vogel: This has been a major challenge. One of the biggest components making it challenging is that long COVID can present in so many ways—over 200 different symptoms. We don’t have well-defined subtypes. Symptoms can overlap and vary in severity: some feel slightly below baseline, some are completely bed-bound. This wide variety makes it hard to classify.

Another challenge is defining it based on documented infection, like a PCR-positive test. Early in the pandemic, access to tests was limited, and now much of the testing infrastructure has diminished. Many people might not even realize they had COVID-19. This diagnostic challenge affects both care access and clinical trials, where you don’t want to exclude people who couldn’t access testing.

There’s a lot of discussion going on, and the National Academies recently had a great discussion about the definition. We need to listen to patients and learn about the disease. Medicine rarely offers perfection; we need to make the best-informed decisions we can.

Dr. Albert Rizzo: I wanted your thoughts on the recent scoring system developed by the NIH’s RECOVER initiative to identify long COVID patients, published in JAMA.

Dr. Julia Moore Vogel: I think it’s a good idea because we need quantitative measures in the absence of a biomarker. But using electronic health record data has limitations—it only captures what’s documented in the record. Fatigue, for example, is hard to classify.

Another challenge is people using it as a strict diagnostic cutoff, which can be premature. Also, EHR-based research only includes those interacting with the healthcare system, often missing the most debilitated patients. So while the approach is valuable, we need to be mindful of these limitations.

Dr. Albert Rizzo: That’s an important perspective. COVID-19 has highlighted healthcare disparities. How do these impact long COVID?

Dr. Julia Moore Vogel: Like other infections, an individual’s outcome depends on the interaction between the virus and their immune system. Early COVID disproportionately affected Black and Hispanic communities, which now also see higher long COVID prevalence. Access to care and the ability to take time off work to rest are also key factors. These disparities must be considered in both research and treatment.

Dr. Albert Rizzo: Can you give us a sense of how long COVID affects different systems in the body?

Dr. Julia Moore Vogel: It’s early days in understanding mechanisms. Potential contributors include immune dysregulation, microclots, and mitochondrial dysfunction. There’s evidence of autoimmunity in some, but not all, patients. It’s possible there are distinct subtypes under the long COVID umbrella. Research will continue to explore these mechanisms and how they differ across patients.

Dr. Albert Rizzo: What about children with long COVID—do we know if it’s a different entity?

Dr. Julia Moore Vogel: We’re in the early stages, but evidence shows long COVID exists in children. It’s often dismissed because symptoms are harder to characterize, like fatigue. Awareness among pediatricians can improve. Prevalence is high—estimated six percent of U.S. adults have long COVID. Every physician should be aware of it for both children and adults.

Dr. Albert Rizzo: You mentioned management strategies, like pacing and energy conservation. Can you elaborate?

Dr. Julia Moore Vogel: Rest is critical. Pacing is inspired by the ME/CFS community. It’s about staying within your energy envelope. Wrist-worn devices like Garmin’s “Body Battery” can help track energy levels throughout the day. Staying within your energy limits prevents exacerbating symptoms, including post-exertional malaise, and may protect long-term energy capacity.

Dr. Albert Rizzo: Are there similarities between long COVID and other post-viral syndromes like ME/CFS?

Dr. Julia Moore Vogel: Yes. Not everyone with long COVID has dysautonomia or ME/CFS, but roughly half meet ME/CFS criteria. From a symptom perspective, it’s indistinguishable. Tools like pacing, learned from ME/CFS, are currently the best symptom management strategies.

Dr. Albert Rizzo: Diagnostic tools beyond history and physical?

Dr. Julia Moore Vogel: For dysautonomia, tilt-table tests and beta blockers can help. Functional assessments—asking about daily living, shower frequency, ability to work—are critical for understanding impact. Real-time feedback from wearable devices aids in symptom management.

Dr. Albert Rizzo: How is research progressing for treatments?

Dr. Julia Moore Vogel: Progress is slow. Clinical trials are small and underpowered. We need well-designed studies to capture subgroup effects. We’re likely five years away from robust treatments. Vaccines have decreased prevalence, and trials like metformin show promise in preventing long COVID if given during the acute phase.

Dr. Albert Rizzo: Are there disparities in treatment access?

Dr. Julia Moore Vogel: Yes. People with long COVID face challenges accessing care and disability support. The system is not structured for energy-limiting diseases. Physician education and equitable access to care are critical.

Dr. Albert Rizzo: Thoughts on education and advocacy?

Dr. Julia Moore Vogel: Public awareness is low. Many think long COVID is rare, but it affects 1 in 10. Physician education is crucial for recognizing symptoms and managing care. Legislative support is needed for research funding and disability coverage. Long COVID is a public health emergency.

Dr. Albert Rizzo: Any final remarks?

Dr. Julia Moore Vogel: If you get COVID, document it with a PCR test. Support people with long COVID by asking what they need, helping practically, and educating yourself about their condition. These small actions matter.

Dr. Albert Rizzo: Thank you so much for joining us today. COVID-19 research and development has been a hallmark topic for Lungcast since we launched three years ago. Be sure to subscribe and rate Lungcast on your preferred platform. Until next time, I’m Dr. Albert Rizzo reminding you: if you can’t breathe, nothing else matters.