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Spaces Event on International Long COVID Awareness Day 2026

About this recording

The International Long COVID Awareness Day 2026 Marathon was an independently organized public community event that brought together participants from across the Long COVID community over the course of the day. The World Health Network (WHN) is hosting the recording in recognition of the importance of the effort and the voices it gathered. WHN did not curate, oversee, or review the program, the speakers, or the content in advance, and is publishing the proceedings as a community record rather than as WHN-produced material. WHN expresses its appreciation to Becky Ancira Robertson for the vision, dedication, and effort she brought to organizing and hosting this marathon, and to all other participants who contributed their voices and energy throughout the day, in shared service of those who suffer from Long COVID.

Following academic convention, the views, opinions, and statements expressed by participants — including those affiliated with WHN — are their own and do not necessarily reflect the positions, policies, or guidance of the World Health Network. Statements made about WHN, its activities, or its relationships with other organizations were not vetted by WHN. They should not be taken as authoritative descriptions of WHN’s views, structure or work. For WHN’s own positions and guidance on COVID-19, Long COVID, and related public health questions, readers should refer to materials published directly by WHN elsewhere on this website.

Several participants are clinicians who discuss their own clinical observations, prescribing practices, and treatment considerations during the event. These remarks reflect individual professional opinion and clinical experience and are not WHN treatment guidance. Nothing in these proceedings should be construed as medical advice, and readers should not act on any specific recommendation without consulting their own healthcare providers.

Part 1: Becky’s Opening and Julie Lam on Advocacy, Loss, and Long COVID Recognition

Summary: Becky opens the International Long COVID Awareness Day Space by framing it as a live act of solidarity, expertise, and love, then introduces Julie Lam of Mask Together America. Julie reflects on Long COVID Memorial Day, the grief and misinformation that shaped her early advocacy, and how the deaths of people close to her pushed her to document masked New Yorkers and build a public-facing campaign around protection and togetherness. She describes how her own Long COVID, immune dysfunction, and antiviral-responsive symptoms changed her role from messenger to patient-advocate, then critiques the erasure and narrowing of Long COVID definitions, argues for clearer etiological frameworks, broader patient inclusion, and stronger prevention messaging, and explains what she has tried to push inside NIH RECOVER around masking, accessibility, and representation. The segment closes with Becky thanking Julie and pivoting into a new section featuring Nina Wildflower.

Part 2: Community, Music, and Long COVID Land

Summary: Becky transitions from Julie Lam’s opening into a community-centered segment featuring Ben, known in the space as Nina Wildflower, whose music and Saturday gatherings offer connection, creativity, and COVID-conscious solidarity. Becky then introduces Deb Holloway, who reflects on six years of illness, loss, and abandonment in the Long COVID community, argues for truth-telling, biomarkers, trials, treatment, and prevention, and explains the purpose of Long COVID Land and the Long COVID Archive as spaces to preserve patient stories and the movement’s history in patients’ own voices.

Part 3: Angela’s Memorial Reflection and Call to Protect Each Other

Summary: After Deb Holloway’s archival focus, Becky hands the space to ILCA (International Long Covid Awareness Day) founder Angela for a moment of silence and a deeply personal reflection on loss, fear, and endurance in the Long COVID community. Angela speaks about the people already lost, the children still being harmed, her family’s health struggles, the terror of watching loved ones decline, and the exhaustion of living Long COVID awareness every day rather than only on designated awareness dates. Her remarks become both memorial and rallying cry: protect each other, tell the truth about COVID and Long COVID, and do not let people continue to die unseen.

Part 4: Dr. Nancy Malek on Airborne Transmission and “COVID for Doctors”

Summary: Becky introduces Dr. Nancy Malek, an anesthetist in Sydney and a trusted ally to the Long COVID community, for a science-focused section on COVID’s ongoing dangers. Nancy argues that COVID is an airborne pathogen and that proper airborne mitigations remain essential, then explains why she created her educational project “COVID for Doctors”: to help clinicians understand the gravity of COVID and Long COVID through evidence they can follow. She discusses the challenge of shifting physician behavior, the history and logic behind COVID for Doctors Part Two, and her hope that these presentations will be shared widely enough to change medical understanding and practice.

Part 5: Dr. Rae Duncan on Diagnosis, Mechanisms, and Where Long COVID Treatment Must Go

Summary: Becky introduces Dr. Rae Duncan, a consultant cardiologist with infectious disease and research training, for an extended clinical discussion that becomes one of the most detailed science-and-care segments of the event. Rae explains how COVID reshaped her medical work from the beginning of the pandemic, why Long COVID remains a disabling reality despite public denial, and why clinicians must listen to patients rather than dismiss them. She discusses diagnosis, endothelial dysfunction, biomarkers, microclotting, NETs, inflammation, viral persistence, and why many current approaches only manage downstream effects rather than “turning off the tap at source.” In the later part of the segment, she addresses treatment uncertainty, the promise and limits of different therapies, the likelihood that monotherapy will not be enough, and the urgent need for better medical education, funding, and properly run clinical trials.

Part 6: Morgan Fairchild and a Frontline Nurse on Prevention, Loss, and Life After Infection

Summary: Morgan Fairchild opens this section with a concise message of solidarity and warning: people with Long COVID are not alone, repeated infections still matter, and the public has been dangerously undereducated about long-term risk. Becky then turns to her co-host, a former ICU and recovery-room nurse, whose testimony becomes one of the most personal sections of the event. She describes the chaos of early COVID care, FaceTiming a dying patient’s wife so they could say goodbye, equipment shortages, getting infected herself, and the long aftermath of Long COVID: loss of work, loss of home, cognitive and visual impairment, vision therapy, and the struggle to rebuild a life through advocacy.

Part 7: Aysha on Safe Sets, Masking in Public Life, and Public Health Advocacy

Summary: Becky welcomes Aysha back to the space as a longtime public-health advocate whose work spans fashion, athletics, and grassroots COVID prevention. Aysha reflects on what she witnessed at Elmhurst Hospital during the early pandemic, explains why she still masks consistently in professional and public spaces, and answers Julie’s question about how to keep a film set safer by using PCR and rapid testing, masking between takes, and air scrubbers when possible. From there, she broadens the discussion to healthcare safety, clean air, medication access, and the wider failure of systems that still prioritize profits over patients. The section ends with a clear message: people who still protect themselves are not alone, and prevention remains both possible and necessary.

Part 8: The ReSisters on Long-Term Care, Allyship, and Public Education

Summary: After Aysha’s segment, Becky welcomes the ReSisters (Christine Cooper & Mary Jo Nabuurs) for a wide-ranging conversation rooted in Ontario long-term-care activism during the darkest early phase of the pandemic. They explain how they met while trying to protect vulnerable relatives, how the name “the ReSisters” came out of organizing rallies and protests, and how that work evolved into a podcasting and public-education project. The conversation broadens into allyship, clean air, misinformation, and why people who do not personally have Long COVID still have a responsibility to listen, speak up, and use their voice on behalf of those who do.

Part 9: Julie Sullivan on Surviving the Early Pandemic and the Reality of Today’s Long COVID Clinics

Summary: Becky introduces Julie Sullivan from Brigham, calling Long COVID clinics a “dying breed,” and Julie responds with one of the starkest healthcare-system accounts in the marathon. She describes working as a rehab manager in Boston-area short-term rehab and skilled nursing facilities during the first wave, when residents died in huge numbers, staff improvised with almost no PPE, and facilities were overwhelmed as hospitals overflowed. From there, she traces the origins of Brigham’s Long COVID program and explains how the clinic now balances clinical care, research, and respect for patients who often feel dismissed elsewhere. The section closes on a cautiously hopeful note: there are still serious people doing serious work, including RECOVER, Harvard Medical School, PolyBio, and smaller studies at Brigham and Mass General.

Part 10: Tara on Long COVID in Healthcare Workers and the Australian Clinical Handbook

Summary: Tara, joining from Melbourne, speaks as both a healthcare professional and a Long COVID patient whose career was derailed by infection in 2020. She explains the hidden burden of Long COVID among healthcare workers, many of whom stay confidential because cognitive dysfunction and professional standards make safe practice impossible. She then introduces the Australian handbook The Rehabilitation and Management of Long COVID as a major lived-experience-informed clinical resource, arguing that patients must be treated as partners and experts if medicine is going to catch up with reality. The clip ends with her call for action, especially to prevent harm to children and future patients, and with practical sharing of the handbook itself.

Part 11: Dr. Marjorie on Loss, Survival, and Why the Cavalry Is Not Coming

Summary: Dr. Marjorie delivers one of the rawest testimonies in the marathon. She describes building what she thought was the American dream — marriage, military service, degrees, a new life in Atlanta — only to have it collapse after she contracted COVID while working in a hospital gift shop during the first wave. She recalls being told by her doctor that she was not sick, watching her body deteriorate, losing work and income, and eventually becoming her own spokesperson through Facebook groups and media interviews. Her central message is unsparing: Long COVID has destroyed lives, the systems that were supposed to help have failed many patients, and people cannot afford to wait quietly for rescue. The section closes with a call to face reality, speak plainly, and hold on to one another.

Part 12: Carlos and Jelly on Wastewater, Stamina, and Keeping the Momentum Going

Summary: After Dr. Marjorie’s devastating testimony, Becky turns to Carlos, who offers an emotional reflection on the day and then grounds the conversation with a short wastewater update: infections remain high, public masking remains inadequate, and only a small viral shift could trigger another surge. Jelly then checks on Becky’s stamina and reflects on how much the marathon has already accomplished, while Becky insists she is still running on the energy of the room. The segment functions as a late-night regrouping moment — part gratitude, part epidemiological update, and part acknowledgment that the event has already become bigger and more meaningful than expected.

Part 13: Tern (@1goodtern on X) on Complexity, Specialization, and Why Long COVID Falls Between Disciplines

Summary: Tern offers a conceptual reflection on why Long COVID has been so badly served by medicine. Specialization, he argues, is useful and often necessary, but it also narrows people’s field of view: as knowledge grows, individual experts know more and more about less and less. Long COVID is exactly the kind of condition that suffers under this structure, because its mechanisms and consequences spill across multiple fields at once. The clip works as a philosophical bridge in the marathon, giving language to why patients so often experience fragmentation, dismissal, and institutional blind spots.

Part 14: Community Reflection, Doctor Empathy, and Becky’s Written Piece

Summary: In the wake of Tern’s message, the marathon pauses for a reflective interlude. Dr. Nancy Malek speaks openly about how emotional and confronting it has been to hear patient stories directly, and Becky asks whether that kind of testimony could change how more doctors respond to Long COVID. Becky then reads a short prepared piece she had written earlier, describing the space as a gathering of hearts, minds, grief, courage, and hard-earned expertise — a place where patients, clinicians, researchers, and families come together and where “your story is data.” The result is a brief but meaningful community checkpoint before the next prerecorded section begins.

Part 15: GLP-1 talk by Dr. David Joffe

Summary: This prerecorded segment dives into one of the marathon’s more unusual and provocative scientific themes: the role of metabolism, adipose tissue, and GLP-1 medications in Long COVID. The speaker argues that post-COVID weight gain is often not just a matter of inactivity, but part of a broader metabolic and inflammatory process, and suggests that drugs such as Mounjaro may help not only by reducing weight but by affecting inflammation, reservoir dynamics, and neuroinflammatory symptoms. The recording then cuts off abruptly, with Becky and Jelly explaining that the second half exists but contains too many dropouts to play cleanly in the space.

Part 16: Mike Hoerger on Mask Quality, CO₂ Monitors, and What the Dashboard Data Suggest

Summary: Mike Hoerger gives a concise, highly usable dashboard update focused on what the self-reported data appear to show about mitigation. He reports lower lifetime infections among people using N95s, elastomerics, or PAPRs compared with lower-grade masks, lower cumulative infections among people who vaccinate consistently, and a similarly favorable signal among people using CO₂ monitors. He also notes that some popular oral or nasal “alternative interventions” track the other way. The result is one of the event’s clearest practical-data segments: not definitive, but highly suggestive and directly relevant to everyday decision-making.

Part 17: Liesl McConchie on Clean Air for Schools and Building Safer Learning Spaces

Summary: Liesl McConchie joins briefly but memorably from the airport, fresh off a strategy meeting with the CR Foundation. Her section focuses on school air quality, implementation, and how to make clean air interventions more normal, practical, and scalable in educational spaces. The conversation has a different energy from the surrounding clips: less about personal testimony or biomedical detail, and more about infrastructure, logistics, and turning safer-air ideas into ordinary practice. Even in a short window, it broadens the marathon from Long COVID suffering toward concrete prevention systems.

Part 18: Mike Hoerger on the Social and Emotional Cost of Staying Safe

Summary: Mike turns from masks and mitigation into one of the marathon’s most grounded everyday segments: the social and emotional price of trying to stay safe in a society that largely refuses to. Using survey data and practical advice, he talks through isolation, teasing, bullying, gaslighting, depression, lost work opportunities, and the need to revisit major life decisions as the pandemic changes people and relationships over time. The clip is less about virology than survival: how to navigate work, family, conflict, and values when protecting yourself has become a long-term way of life rather than a short emergency response.

Part 19: John Bailey on Grief, “Grief Brain,” and What COVID Adds to Loss

Summary: John Bailey introduces himself as a retired investigator, martial artist, hypnotherapist, author, and teacher, then turns the space toward grief in both personal and structural terms. He describes the psychological impact of loss, the idea of “grief brain,” and the way COVID compounds already-overwhelmed executive function by stacking one form of compromise on top of another. Moving between cultural critique and intimate examples, he argues that modern society is profoundly unequipped to cope with grief and that Long COVID sufferers are being forced to navigate layers of loss — physical, social, emotional, and existential — inside that already grief-incompetent culture. The section is cut short by technical failure, but the core of the argument lands strongly before the dropout.

Part 20: Gary and Mike Hoerger on Hospital Ventilation, Infrastructure, and Why Evidence Still Matters

Summary: Gary joins to reflect on finally being back in contact with healthcare researchers after years of isolation, then turns the conversation into a deeply concrete discussion of ventilation and institutional neglect. Drawing on decades of healthcare engineering experience, he explains why some hospital spaces had good air only because expensive equipment demanded it, while overcrowded staff work areas often had obviously bad ventilation that nobody wanted to address. Mike connects that perspective to the need for CO₂ monitors, building teams, and empirical evidence strong enough to move policy. Together, they sketch one of the marathon’s clearest infrastructure-focused arguments: airborne safety is often technically solvable, but institutions still avoid it until the data become impossible to ignore.

Part 21: Amy Mitchell, Gary, and Mike Hoerger on Chronic Infection, Patient Expertise, and Why People Want the Science

Summary: After platform glitches force a reset, Becky takes a short breather and moves Amy Mitchell from the Long Covid Action Project (LCAP) up early rather than losing momentum. What could have been dead air turns into one of the marathon’s most revealing late-night conversations. Amy lays out her years-long experience as an original long hauler, including chronic infection, immune dysfunction, experimental treatment combinations, and her work through LCAP to push research and legislation toward viral persistence and real therapeutics rather than symptom scorecards alone. Gary then joins to connect her story to severe immunological dysfunction, genetics, and even the spillover effects of COVID on pets, while Mike reflects on how patients like Amy are often doing the intellectual labor institutions should already have done. By the end, Becky and Mike turn the whole exchange into a broader point: people really do want the science, and in this era, many patients have effectively been forced into the role of citizen scientists.

Part 22: Steve and Corona Zero on Respirator Standards, Mask Quality, and Pandemic Uncertainty

Summary: After Becky thanks Mike Hoerger for carrying so much of the marathon, Steve jumps in with a practical correction: not every ear-loop “KN95” should be treated as equivalent to a properly fitted respirator, and people often confuse filtration standards, naming conventions, and real-world protection. Mike uses that opening to summarize what the survey data appear to show — stronger headband respirators, cleaner air, and air-quality monitoring correlate with fewer infections — while Corona Zero turns the conversation toward a broader question of historical uniqueness and scientific uncertainty. The result is one of the event’s most technically minded open-floor sections: a conversation about mask quality, how people interpret evidence, and why COVID continues to expose the limits of certainty in real time.

Part 23: Dave, Mike Hoerger, Dr. Nancy Malek, and Becky on Why Mask, What Counts as Long COVID, and the Isolation of Living in an Alternate Universe

Summary: Dave shifts the space away from technical masking talk and into the deeper question of what it feels like to live in a world that does not acknowledge the reality of Long COVID. He asks why people mask, whether they are really masking to prevent Long COVID, and what Long COVID even means when definitions vary and awareness remains so poor. Dr. Nancy Malek responds from science and self-preservation — COVID is airborne, the complications are too serious to ignore, and filtered air is simply preferable once you understand aerosols — while Mike answers from everyday material reality, including work and mortgage survival. Dave then turns the discussion toward alienation, grief, and refusal: after six lost years and an “alternate universe” of denial, he is less interested in polite blame and more interested in rejecting the structures and narratives that keep failing people.

Part 24: Dr. Joffe on Australia, GLP-1s, Education, and Building an International Long COVID Society

Summary: Dr. Joffe joins mid-marathon and turns the conversation toward the structural failures of medicine and policy. He argues that Long COVID in Australia has been treated as a “nothing burger,” warns about the consequences of underestimating pediatric and population-level harm, and discusses emerging treatment ideas ranging from metabolic interventions to GLP-1-based approaches such as Mounjaro. But the larger through-line is institutional: clinicians will not change unless they are educated, and education will not happen unless long COVID is forced into professional structures, funding pathways, and continuing medical training. That logic culminates in his description of a planned International Society for long COVID and post-acute infectious syndromes, intended to unify post-viral illness advocacy without minimizing the distinctiveness and scale of Long COVID itself.

Part 25: Solenn Tanguy, Dr. Joffe, and the Fight Over Long COVID Specificity

Summary: Solenn speaks from both lived experience and advocacy in France, insisting that Long COVID must still be named clearly as COVID and Long COVID if prevention, research, and accountability are to remain possible. She argues that broad “inclusive” umbrella framing can end up erasing real patients and turning disease-specific science into generic symptom management. Dr. Joffe pushes back from a different angle: in his view, the real enemy is not clinician indifference so much as governments and funding systems that benefit from fragmentation, undercounting, and the obscuring of chronic post-infectious harm. What follows is one of the sharpest strategic exchanges in the whole marathon — not about whether Long COVID matters, but about how not to let it disappear.

Part 26: Amsterdam, Patient Voice, and the Politics of Representation

Summary: After the tension of the previous exchange, the room pivots into a more tactical conversation about representation. Corona Zero asks who is actually shaping the Amsterdam-based international-society effort and whether long-COVID patients are meaningfully involved early enough. Betty then offers a Netherlands perspective, describing how long COVID is already being grouped with ME/CFS, Lyme, and similar conditions in protests and political discussion, sometimes with a specific carve-out for Long COVID and sometimes without one. Becky, exhausted but still strategically focused, says the key is to understand what they are up against: if activists do not understand the logic, structure, and politics of these institutional moves, they will not know how to push back effectively.

Speakers

Hosts / recurring core voices

  • Becky Ancira Robertson, LC Patient, LC Advocate
  • Dr. Mike Hoerger @michael_hoerger (see https://www.pmc19.com/)
  • Jelly / Dr. Joe Eastman
  • Amy Mitchell, LCAP (Long Covid Action Project)
  • Gary Anderson, Scientist
  • Dr. Nancy Malek, Anesthetist, Covid For Doctors 1 & 2 (educational productions)

Guest Speakers:

Last reviewed on May 6, 2026

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