Still Here: A Podcast From The Sick Times

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-Mentioned in this episode (in order of appearance):The Sick Times: Clinical trials are testing cancer drug rapamycin for Long COVID and METhe Sick Times: Berlin Cures’ failed Long COVID clinical trial yields lessons on study designResearch Square: Simmaron preprint on low-dose rapamycin clinical trialmedRxiv: Erlangan preprint on BC 007 clinical trialThe Sick Times: How volunteering to be a lab rat paid offAdditional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: Live blog: Following the Patient-Led Research Fund summer 2025 webinarThe Sick Times: Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRCThe Sick Times: Live blog: Following the Spring 2025 PolyBio Symposium on Long COVID and related diseasesThe SIck Times: This surgery fuses people’s skulls to their spines to treat a condition overlapping with myalgic encephalomyelitisPatient-Led Research ScorecardsThe Sick Times: Research updates, July 15The Sick Times: Live blog: Following the RECOVER-Treating Long COVID kickoff eventAdditional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC)The Sick Times: Research updates, July 8The Sick Times: Frustrations, Denials, Long Drives: Immunocompromised People Can’t Access a Lifesaving COVID-19 DrugThe Sick Times: Invivyd Chairman Marc Elia: The bureaucracy is killing people with Long COVIDThe Sick Times: Summer fundraiser: Help keep our essential work going into 2026Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: Priced out: Some Long COVID and ME specialists charge high prices for concierge careThe Sick Times x Long COVID Justice: Long COVID EssentialsHelp for Long COVIDThe Sick Times: Research updates, July 1The Sick Times: Summer fundraiser: Help keep our essential work going into 2026Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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.)-Mentioned in this episode (in order of appearance):The Sick Times: Los Angeles’ $13M COVID-19 relief funds could go to building upgrades, not Long COVID careLos Angeles County Public Health: Public Health Virtual Town Hall on Long COVID Clean Air LA The WaysideThe Sick Times: Summer fundraiser: Help keep our essential work going into 2026Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):Podcast feedback surveyThe Sick Times: Illinois could become the first state in the country to ban mask bans. Here’s how we created the bill to do it.The Sick Times: Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatmentThe Sick Times: Research updates, May 27RECOVER-TLC Intervention Information Request formAdditional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: The federal government is restricting COVID-19 vaccine access. Here’s what that means for the ongoing pandemic and people with Long COVID.Wall Street Journal: RFK Jr.: HHS Moves to Restore Public Trust in Vaccines (archive.ph link, free to access)Your Local EpidemiologistVaccine Integrity ProjectYour Local Epidemiologist: Four ways to anticipate next week's ACIPThe Sick Times: Research updates, June 17The Sick Times: Research updates, June 3Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: Live blog: Following the Spring 2025 PolyBio Symposium on Long COVID and related diseasesPolyBio Research Foundation Youtube: PolyBio Spring 2025 SymposiumThe Sick Times: Live blog: Following the Fall 2024 PolyBio Symposium on Long COVID researchThe Sick Times: I want a Long COVID language revolution — not language imposed onto my sick, disabled bodyAdditional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: “Long COVID Mode”: Seeing the crisis through gamesThe Long COVID GameSierra Club: Online Games Can Deepen Our Attention to EcologySeek by iNaturalistIntrapology by Zoyander StreetThe Sick Times: How volunteering to become a lab rat paid offThe Sick Times: Research updates, May 6Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: Two Long COVID-focused performances show the power of art for reflection and solidarityThe Sick Times: “Marching from home”: New rock musical embodies the challenges and resistance of people with energy-limiting diseasesThe Sick Times: Missives from the dismissed: Still COVIDing without communityThe Sick Times: Instead of supporting people with Long COVID, our government funds a genocideHEPA collective (behind Wake Up and Smell the COVID) InstagramSign up for the mailing list for AIR CHANGE PER HOUR updatesThe Sick Times: COVID-19 triggered a life-threatening pulmonary embolism that led to long-term lung damage. It took two ER trips before doctors believed me.The Sick Times: Research updates, April 29Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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(00:02:15) This surgery fuses people's skulls to their spines to treat a condition overlapping with myalgic encephalomyelitis(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-Mentioned in this episode (in order of appearance):The Sick Times: This surgery fuses people's skulls to their spines to treat a condition overlapping with myalgic encephalomyelitisThe Sick Times: Missives from the dismissed: Still COVIDing without communityThe Sick Times: Research updates, April 22Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

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-Mentioned in this episode (in order of appearance):The Sick Times: National COVID-19 trends, April 15CDC wastewater dashboardBiobot wastewater risk reportsWastewaterSCAN dashboardThe Sick Times: $11 billion CDC funding cuts may decimate Long COVID response in several statesThe Sick Times: UPDATE: RECOVER Long COVID pathobiology grants restoredThe Sick Times: A timely book of poetry chronicles a mother — and her daughters’ — experienceThe Sick Times: Research updates, April 15Additional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) Pixabay: Thunder and the beginning of rainfall

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-Mentioned in this episode (in order of appearance):Still Here: Exit interview with Patient-Led Research Collaborative co-founder Lisa McCorkellSubmit a voice memo reflecting on over 5 years of COVID-19 and Long COVIDThe Sick Times: National COVID-19 trends, April 8CDC wastewater dashboardBiobot wastewater risk reportsWastewaterSCAN dashboardThe Sick Times: “It’s like torture”: The tilt table test could be risky for many people with Long COVIDThe Sick Times: An international emergency task force is urgently needed for Severe Long COVID and ME crisis casesThe Sick Times: Research updates, April 8Stanford Medicine: Stanford Medicine trial: 15-day Paxlovid regimen safe but adds no clear long-COVID benefitThe Sick Times: For people with severe Long COVID, medical care is out of reachAdditional audio in this episode: Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) Pixabay: Thunder and the beginning of rainfall

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.