In this episode of Still Here, the finale of our season 1 ends the way it started, with a recap of the latest RECOVER-TLC workshop.
The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:30) Recap of 2025 RECOVER-TLC workshop
(00:28:00) Outro
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In this 2-way episode of Still Here: Co-host Betsy Ladyzhets interviews Caitlin Rivers, an epidemiologist at Johns Hopkins University’s Bloomberg School of Public Health and author of the popular newsletter, Force of Infection, as well as the book Crisis Averted: The Hidden Science of Fighting Outbreaks.
Rivers discussed which data sources she relies on for her trend updates, interpreting data for day-to-day decisions, questions she still has about COVID-19 patterns, how the Centers for Disease Control and Prevention (CDC)’s data pages could better acknowledge Long COVID, ongoing bird flu concerns, and more.
The transcript of this Q&A is available on The Sick Times' website.
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In this 2-way episode of Still Here: In spring 2025, Salvatore and Stephanie Mattera launched the new site Help for Long COVID, inspired by Salvatore’s challenges finding healthcare after he developed the disease. Salvatore talks with podcast co-host Betsy Ladyzhets about how the project — which he describes as a community Wikipedia-type database — came about, feedback they’ve received so far, his advice for people with Long COVID seeking healthcare, and more.
The transcript of this Q&A is available on The Sick Times' website.
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In this episode of Still Here: A two-way between Miles Griffis and Betsy Ladyzhets comparing and contrasting Long COVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence.
The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:36) Recap of 2nd Keystone Symposia on Long COVID
(00:20:33) Research
(00:22:48) Outro
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In this episode of Still Here: A two-way between Miles Griffis and Betsy Ladyzhets comparing and contrasting Long COVID and ME clinical trial designs for drugs targeting immune dysregulation and viral persistence.
The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:05) 2-way: Long COVID clinical trial design for JAK inhibitors, drugs targeting viral persistence
(00:28:37) Outro
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In this episode of Still Here: A two-way between Felicity Nelson and Betsy Ladyzhets comparing and contrasting the BC 007 and rapamycin Long COVID and ME clinical trial designs.
The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:15) 2-way: Long COVID clinical trial design, BC 007 and rapamycin
(00:27:47) Outro
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In this episode of Still Here: The Sick Times' team recaps the Patient-Led Research Fund summer 2025 webinar. Plus, an update about the National Institutes of Health's RECOVER-Treating Long COVID initiative.
The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:25) Recapping the PLRF summer '25 webinar
(00:19:17) Research: RECOVER-TLC announces hybrid workshop
(00:21:41) Outro
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In this episode of Still Here: Contributing writer Simon Spichak discusses what experts say are Canada's "contradictory" and "concerning" latest guidelines for Long COVID, the CAN-PCC.
Plus, in research, we talk about a new study group to test the monoclonal antibody Pemgarda for Long COVID and post-vaccine syndrome, as well as a new study from Taiwan that found 14% of children developed Long COVID after being infected with SARS-CoV-2.
And we share updates on our summer fundraiser, too. The transcript for this episode can be found on our website, or jump to a specific part of the podcast below:
(00:00:00) Intro
(00:01:55) Top story: Behind the new "concerning", "contradictory" Canadian guidelines on Long COVID
(00:19:38) Research
(00:23:53) Updates on our summer fundraiser
(00:26:44) Outro
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In this episode of Still Here: Contributing writer Britta Shoot discusses the patchwork of care for people with complex chronic illnesses, like myalgic encephalomyelitis, and how insurance providers create a lose-lose situation for patients and healthcare providers.
Plus, in research, we're looking at a study published in Nature Communications about a new antiviral drug prototype that prevented Long COVID in mice and could also help treat the disease.
And we share a little more about our summer fundraiser, including potential donation perks!
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:01:32) Why ME, Long COVID specialists charge high prices for concierge care
(00:12:38) Research: Antiviral drug prototype that prevented Long COVID in mice
(00:14:20) Summer 2025 fundraiser — help us keep our work going!
(00:16:38) Outro
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In this 2-way episode of Still Here: Paul Hennessy, a COVID-19 safety advocate based in the Los Angeles area and the Activism Director for Mask Together America, shares more about getting involved in local COVID-19 organizing, a LA budget proposal that reallocated COVID-19 funds meant for cleaner air to other infrastructure upgrades, and considerations for demonstrations centering Long COVID.
The transcript of this Q&A is available on The Sick Times' website. (Photo pictured courtesy of Elle Siebert.)
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In this episode of Still Here: Disabled writer and photographer Megan E. Doherty talks about her recent op-ed covering Illinois advocates' work on legislation that would ban mask bans in Illinois. And writer and artist Kelsey Simpkins discusses a gallery exhibit that opened last month in Colorado showcasing the work of artists with Long COVID.
Plus, in research, we're looking at the rapid responses to a op-ed in The BMJ (British Medical Journal) that spread false claims about ME, and we'll also give a short update on RECOVER-TLC.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:02:14) Working to ban mask bans in Illinois
(00:11:25) Colorado art exhibit uplifting artists with Long COVID
(00:22:52) Research: Rapid responses to false claims about ME/CFS in a BMJ op-ed; update on RECOVER-TLC
(00:25:46) Outro
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In this episode of Still Here: Reporter Laura Weiss covers the slew of COVID-19 vaccine policy changes that have occurred since Department of Health and Human Services Secretary Robert F. Kennedy assumed office.
Plus, in research, we're looking at a study published in Pediatric Research that found pregnant people who were infected with SARS-CoV-2 during their first trimester were more likely to have smaller newborns.
The transcript for this episode is available on The Sick Times' website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:01:29) COVID-19 vaccine policy changes
(00:17:51) Research: Impact of SARS-Cov-2 exposure in first trimester on childbirth
(00:20:38) Outro
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In this episode of Still Here: The Sick Times' team recaps the Spring 2025 PolyBio Research Symposium on Long COVID. And disabled journalist Lygia Navarro talks about the language we use for Long COVID, rounding up reader responses to a survey about terms used to describe aspects of the Long COVID experience.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:01:07) Recapping the Spring 2025 PolyBio Research Foundation Symposium on Long COVID
(00:14:55) A Long COVID language revolution
(00:28:42) Outro
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In this episode of Still Here: Journalist Kate Fishman talks about how game designers have used their medium to showcase experiences of Long COVID, highlight COVID risk, and offer an opportunity for people to think more deeply about ableism. And science and medicine journalist Felicity Nelson shares her experience participating in a Long COVID clinical trial (for low-dose naltrexone).
Also in this episode: A small preprint published in Research Square looking at post-vaccine syndrome.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:01:45) Games providing a lens into the Long COVID experience
(00:14:40) Becoming a Long COVID clinical trial participant
(00:25:04) Research
(00:26:30) Outro
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In this episode of Still Here: Betsy Ladyzhets and Heather Hogan recap two April 24 arts events focused on creating space for artists with Long COVID to share their work safely and provide a container for the spectrum of emotions they're feeling. And freelance writer Anna Wenner talks about the importance of self-advocacy after it took two ER trips for doctors to recognize she had a pulmonary embolism caused by a SARS-CoV-2 infection.
Also in this episode: Two studies looking at the global impact of Long COVID on healthcare workers.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:02:10) Two Long COVID-focused performances show power of art for reflection, solidarity
(00:17:16) Self-advocacy after COVID-19 triggered a pulmonary embolism
(00:26:07) Research: Two studies looking at Long COVID prevalence among healthcare workers
(00:28:41) Outro
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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. (Find more information about the meeting, including deadlines for scholarships and short talks, on the Keystone Symposia website.)
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.
The transcript of this Q&A is available on The Sick Times' website.
In this episode of Still Here: Science journalist Colleen de Bellefonds discusses a spinal surgery that can help reduce symptoms for some people who have a rare complication of myalgic encephalomyelitis — and, increasingly, Long COVID. And writer and COVID resource archivist Nadica Zimmerman shares experiences from people still practicing COVID safety in the midst of a lack of community support.
Also in this episode: A preprint of a study in which researchers from University of California, San Francisco, and the National Institutes of Health found that COVID-19 may increase the long-term risk of cancer.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:12:45) Missives from the dismissed: Still COVIDing without community
(00:25:59) Research: UCSF preprint about COVID-19 and cancer risk
(00:28:34) Outro
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The Trump administration's order to eliminate $11 billion in Centers for Disease Control and Prevention grants has already impacted some state health departments' work monitoring and researching Long COVID — even with those cuts in limbo.
And in her collection "Days of Grace and Silence: A Chronicle of COVID's Long Haul," Ann E. Wallace chronicles her and her daughters' ongoing journey through Long COVID through poetry.
In this episode of Still Here: How $11 billion CDC cuts are impacting state health departments' efforts to monitor and research Long COVID. Also, Jersey City poet emeritus Ann E. Wallace reads three poems about living with the virus.
Also in this episode: Three studies showing the impact of SARS-CoV-2 infection on children. And the latest COVID-19 trends.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:01:47) COVID-19 trends
(00:05:27) CDC cuts impact state Long COVID response
(00:16:30) Poetry about living with Long COVID as a family
(00:24:20) Research: Three studies on COVID-19's impact on children
(00:27:16) Outro
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While tilt table testing is considered the "gold standard" for POTS diagnoses, it can prove risky for many with Long COVID. And on average, the Severe ME Advocacy group sees at least one crisis case from a person with Severe ME facing potentially fatal medical neglect or traumatic medical abuse.
In this episode of Still Here: Author and reporter Justine Barron talks about the nuance of tilt table testing. Plus, advocate and writer Sam Pearce on her appeal to ME and LC organizations to create an international task force centered on Severe ME and Long COVID crisis cases.
Also in this episode: The results of a highly-anticipated Yale study on Paxlovid. And the latest COVID-19 trends.
The transcript for this podcast is available on The Sick Times’ website. You can jump to specific sections of the podcast and transcript below:
(00:00:00) Intro
(00:02:25) COVID-19 trends
(00:06:14) Nuances of tilt table testing
(00:17:47) Severe Long COVID/ME crisis case task force urgently needed
(00:26:34) Research: Yale Paxlovid study (and its silver lining)
(00:28:41) Outro
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Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. She spoke with Still Here co-host Betsy Ladyzhets about formative Long COVID studies, advocating for federal funding, developing new patient-led initiatives, and more.
The full transcript of this interview is available on The Sick Times' website.
PLRC started in spring 2020, when a group of people with Long COVID connected in an early support group and used their research experience to begin studying the disease.
They published some of the first scientific papers about Long COVID, work that was instrumental in defining the disease and garnering attention from other scientists, policymakers, journalists, and the world at large.
