Summary
Organizers focusing their efforts around Long COVID support, cleaner air, and COVID safety are part of a long lineage of community care networks that echo those formed during the onset of the HIV/AIDS epidemic. The new COVID Safety Handbook chronicles that history and lays out practical guidance for navigating COVID health boundaries, discussing the science behind SARS-CoV-2, and changes in relationships that come with Long COVID. For the first episode of 2025, podcast producer James Salanga interviews investigative journalist Violet Blue, the handbook’s author.
Also in this episode: the latest COVID-19 numbers, norovirus and bird flu updates, an update on our end-of-year fundraiser, and a UC San Francisco case series looking at longer courses of the antiviral Paxlovid.
Note: This episode was recorded before the onset of the Los Angeles fires. We have a story up about those here.
Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.
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Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.
Mentioned in this episode (in order of appearance):
- The Sick Times: National COVID-19 trends, January 7
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- Gothamist: Norovirus, a gross stomach bug, appears to be hitting NYC. Good luck finding out where.
- Instagram: PPE for California
- The Sick Times: How America lost control of the bird flu, setting the stage for another pandemic
- The Sick Times: “Stand Together,” an excerpt from The Covid Safety Handbook
- COVID Safety Handbook
- The Sick Times: End-of-year fundraiser results: Thank you for supporting The Sick Times!
- The Sick Times: Research updates, January 7
- Stanford Medicine: Stanford Medicine trial: 15-day Paxlovid regimen safe but adds no clear long-COVID benefit
Additional audio in this episode:
- Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece)
- Pixabay: Thunder and the beginning of rainfall
Transcript
Intro (0:00)
[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]
James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets.
[Instrumental ends]
Betsy: We’re the co-founders of The Sick Times.
James: I’m James Salanga and I’m Still Here’s producer.
Miles: Many public health authorities are ignoring the ongoing COVID-19 pandemic.
Betsy: But here at The Sick Times, we’re not. We’ll continue to bring you the latest Long COVID news and commentary each week.
Miles: Without pandemic denial, minimizing, or gaslighting.
James: And we’re back from our end-of-year break. If you’re new here, this podcast is typically an abridged version of our newsletter, which publishes every Tuesday.
Betsy: We’ll share the latest on COVID-19 trends.
James: And we talk about one or two of the stories that we’ve published on The Sick Times’ website recently. In this episode, we’ll have an interview from COVID Safety Handbook author and investigative journalist Violet Blue talking about the handbook, which we published an excerpt of this week.
And we’ll give a final end-of-2024 fundraiser recap.
Miles: We’ll also share some of what’s happening in Long COVID research.
Today’s research updates include a UC San Francisco case series, where researchers found that an extended course of the antiviral Paxlovid appears to help some people with Long COVID.
James: Now, let’s get to our COVID forecast.
[Sound of thunderclap and light rain]
COVID-19 forecast (1:20)
Betsy: Forecast at the moment for basically all of the United States is, we are in a winter COVID surge.
It’s been the case for every winter since the pandemic started that we have had a major increase in cases between November and February or so.
For the most recent data we have, which represents the end of December — so right around that Christmas to New Year’s kind of week — all the wastewater and health care system metrics show COVID-19 increases during that time.
The Northeast and Midwest as regions have had the highest increases and the greatest SARS-CoV-2 levels in wastewater, but the West and South also have reported increases. Basically all states are reporting increased coronavirus levels in wastewater, increased emergency department visits, hospitalizations, all of that.
It’s really just a matter of, kind of, different magnitude from place to place.
This winter, as I’ve been saying for the last few weeks, has been a bit atypical in that the winter surge kind of started later than usual. So experts are now watching closely to see whether we have, you know, a peak at the end of December and then cases come back down, as has happened the last couple of years, or whether cases continue to increase and we have a peak later than usual, maybe later in January or early February.
It’s very hard to say right now because data are delayed coming off of the holidays and just in general, we don’t have as much real-time information on COVID-19 as we did in like 2021 or 2022.
It’s a bit hard to predict what’s gonna happen, but we’ll have to keep watching.
And even without a clear sense of exact numbers or exact magnitude of cases, we can still say confidently there is a lot of COVID right now.
It’s going to cause severe disease and death for some people. It’s going to cause Long COVID for some people. And we are not doing enough, uh, community public health measures to make a significant difference at this point in the pandemic. So it remains important to take precautions.
Miles: To find out more about our COVID data and more links to our sources, you can go to our website. And you can also read Betsy’s full report on our website as well at thesicktimes.org.
Betsy: In addition to COVID, there are other viruses going around right now. One is norovirus, which if you’re not familiar with it, is a gastrointestinal virus.
So it causes nausea and vomiting. I’ve had a couple of friends in New York City who have had this recently and they reported it being a very bad time.
So this is one virus for which actually washing your hands is the correct method [laughs]. I know we all make fun of this with [public health officials recommending this for] COVID [prevention], but it is actually very important.
It spreads through contaminated surfaces, contaminated food, stuff like that. And you do specifically have to wash your hands — public health experts warn that hand sanitizer is not enough to neutralize this nasty, nasty virus.
James: Miles, have you had, do you know anybody who has contracted or who has had norovirus in the past few weeks?
Miles: I actually don’t, surprisingly, that I’m aware of at least.
James: Me neither. I wonder, I wonder if that’s a California thing or like — I feel like the people that I know that I’ve seen talk about it have been in the Midwest or on the East Coast, actually.
Betsy: Yeah, I haven’t looked at the norovirus data that closely, other than just like, “Oh, both the test positivity rates and the wastewater levels are like, significantly higher than it’s been in the last couple of years,” which is what experts have been talking about.
I did a story a couple of years ago for Gothamist about norovirus in New York City.
And it was like one of my favorite local health pieces that I worked on.
I had the funny experience where there was a WNYC segment about it and then a former colleague messaged me on Twitter and was like, “I heard you on the radio and I have norovirus, my whole family has norovirus right now and you were right, it sucks.”
Miles: It’s awful.
Betsy: [laughing wryly]
James: [chuckles]
Betsy: I was like, “Oh no.” Apparently it’s hard to track because people are so embarrassed by it that they, like, don’t want to go to the doctor. [laughs]
So normally it’s not, like, formally tested for, but as of the last couple of years, Wastewater Scan has been tracking it.
So they now have a pretty good dataset, which is why people can say like, “Oh, there’s a lot more of it this year than previously.”
‘Cause, of course it goes into the toilet, right? So [laughs].
Miles: It’s so bad. I got it last spring, it’s awful.
James: Oh no.
Betsy: Oh, I forgot that you got it last year, yeah.
Miles: Yeah. [laughs] Norovirus on top of Long COVID is not what you want.
James: Yeah, that makes sense.
[wryly] They should make a T-shirt for that — ”I survived Norovirus while having Long COVID and all I got was this T-shirt.”
Miles: Seriously.
Betsy: The other virus has been making a lot of headlines recently is the bird flu, H5N1.
So we’re recording this on January 7th, and just yesterday, on Monday the 6th, the Louisiana State Health Department reported the United States’ first death from bird flu in the sort of current round of outbreaks that started last spring.
As we pointed out in our newsletter today, a lot of public health statements and media coverage of this case have emphasized that this person who died of bird flu was “over 65 and had underlying medical conditions”. That, some experts have said, is kind of a minimizing framework, when, really, we know this is a dangerous virus.
It has a high mortality rate from the cases that have been reported in the last few years.
And experts say, you know, if the bird flu continues spreading, which seems very likely based on the way it’s been going over the last few months, more deaths are very, very likely, particularly for people who work in dairy farms or work with poultry as the virus is primarily spreading — as far as we know — from animals to people right now.
We’re planning to do a story about the bird flu soon.
So if you have specific questions that you want us to answer in that piece, things that you haven’t seen covered by the mainstream media about this, you can reach out to us at editors@thesicktimes.org.
James: I know California has been a state where, you know, there are a lot of farm workers [and where bird flu has been present in wastewater]. I think we recently shared in our newsletter a piece from the LA Times about the lack of surveillance in the California Central Valley.
That creates a lot of hurdles because that is where a lot of the farm workers in California are based.
And so there’s a coalition of mask blocs that I have mentioned before, PPE for California, that has been working to try and get PPE to farm workers.
And I will share more information about that again in the podcast description.
We did republish, this week, a story from KFF Health News about America’s handling of bird flu and, you know, some of the potential public health ramifications of that early response.
If you’re also looking to learn more about what we do know about bird flu, or H5N1, you can also check out that story on our website.
And after a quick musical break, we’ll hear from longtime investigative journalist, Violet Blue, who authored the newly published and crowdfunded COVID Safety Handbook.
And we’ll share a final update from our end-of-year fundraiser.
[instrumental segment of theme song plays]
The Sick Times: “Stand Together,” an excerpt from The Covid Safety Handbook (8:35)
James: Violet Blue remembers growing up in San Francisco’s Castro neighborhood during the onset of the AIDS epidemic.
When the city announced its first local cases of the novel coronavirus on March 5, 2020, it became the earliest and strictest U.S. city to enact a shelter in place order.
And it also held the title of most lives saved in the country, with actions that were driven by lessons about community care [that] people had taken up during the government abandonment during [the] initial spread of AIDS. But then the city reversed course.
I spoke with Blue, who’s now currently based in New Zealand to work on a book examining the country’s response to the first three years of the COVID-19 pandemic.
We talked about the handbook and the continued importance of sustained community care as the five-year anniversary of COVID-19 in the United States approaches.
Here’s that interview, condensed for a top story segment.
Violet, if you want to introduce yourself, say a little bit more about your work and how you kind of decided to author this COVID Safety Handbook.
Violet Blue: My name is Violet Blue.
I’ve been a journalist — in and out of mainstream media for, oh gosh, maybe 20 years, it’s been a really long time — and also an author.
I sort of stumbled into covering COVID when COVID first started hitting at the end of 2019, early 2020. And at the time I was doing just a lot of cybersecurity reporting, but I also have a background in public health and public health communications workshops and teaching.
COVID ended up being just sort of this twin beat that I’ve ended up covering with a weekly newsletter for the past five years running, covering news and developments, and being one of those people who have just been observing this giant wave of disinformation and public health miscommunication, and being entirely frustrated at the lack of accuracy about COVID communication news and facts.
And then also watching communities not being listened to about what their day-to-day and real experiences were with COVID and what’s been going on with it still. That sort of is a long story to what has led me to the COVID Safety Handbook.
James: Right. And I know the book was crowdfunded.
So tell me a little bit about how that process went and say more about some of the gaps in public health communication that you’ve observed over the past five years that you knew you wanted this handbook to tackle.
Violet: We started a Kickstarter with a giant team which was really nice.
And the Kickstarter was amazingly successful. It gave us so much juice and so many spoons to be able to just, like, take this project and really research it out in ways that we felt could make it complete.
We did a giant survey of people about COVID prevention and COVID practices, about long COVID and Long COVID in relationships and just built on reaching out to the community and talking to people about their lived experiences, working that into the book. And also reaching out to professionals, therapists, counselors, people who are trying to do COVID support groups and reaching out to people in mask blocs and people who are doing grassroots activism all over the world and bringing all that knowledge together, putting it into a tome that people could then use but also be able to hand to loved ones and say, “Here, I want you to better understand me.”
James. Yeah. Tell me a little bit more about that and what you’ve been hearing, especially for people with Long COVID.
Violet: So the reviews have blown us out of the water so far, like, people who have been leaving reviews on Goodreads and Amazon, it’s all been really amazing and really supportive, and it’s been really personally speaking to people as well.
Particularly people who are struggling with Long COVID and Long COVID in relationships and Long COVID in friendships, as well, because it’s so difficult to help people on the outside understand what the lived experience of Long COVID is like. And we were very lucky that we had so many people come in and share their time with us about everything from not having the energy to explain what they’re going through to the feeling of grief and disappointment in the day to day.
One of the, the things that I’m really proud of too with the book is that we really focused on health boundaries.
We’ve been bombarded with messaging over the past five years that our health boundaries don’t matter and worse that our health boundaries are problematic that they get in the way.
This is something that I think as a sex educator directly ties into sexual boundaries, and our boundaries about our sexuality and our gender, where we’re gaslit about those boundaries and told that those don’t matter.
They are actually the fundamental core of who we are in so many ways, and so [it was important] being able to really discuss boundaries around health, but also the importance of those boundaries personally and in a COVID context and then really getting to tease those out in terms of — here’s what your COVID boundaries look like in everyday situations.
Here’s what it looks like when someone tries to push your COVID boundaries.
Here are some sample templates of things you can say and things you can do when people are trying to break down your personal boundaries.
And that was something we hadn’t really seen discussed or written out or really explained anywhere else.
James: I know you mentioned that you really drew on people with lived experience with COVID, with Long COVID, you know, with lived experience organizing around COVID [to write the book].
What are some of the other inspirations for the book that you had in mind while going into writing it?
Violet: There’s a lot.
There’s a giant global movement coming out of all of the Long COVID groups, all of the activism that’s being done, everything from mask blocs to Corsi Rosenthal box workshops to parent groups that are springing up around the world to try and get clean air in schools to prevent their kids from getting COVID.
You know, this book isn’t me. This book is all of these people.It’s all of this work and all of these different people coming from all of these different areas to work on disability justice, inclusivity, and raising awareness about Long COVID and COVID generally and prevention and how simple prevention is when it comes down to it.
I think that’s really one of the more passionate inspirations I’ve had for the book as I’ve been working on it, is really getting to dig into this massive movement that’s happening that, like the experience of people with Long COVID, is going completely overlooked.
James: The section that The Sick Times excerpted and published is the intro to the COVID Safety Handbook, where you do touch on this organizing around COVID safety that is connected to broader movements around disability justice.
And you also connect this movement to the long tradition of community care networks from the start of the AIDS epidemic to the current pandemic.
And I’m curious how you’ve seen these community care networks develop and change from your time, you know, being in San Francisco to now studying COVID in New Zealand and just efforts around the globe.
Violet: You can see a throughline if you take a look at it in context.
I grew up in San Francisco, in a place where streets that I think were once full of people were very empty, because so many people were disabled and had died.
This enormous group of community of individuals who were from all walks of life, all genders, all orientations had been coming together for generations, actually, at that point to essentially care for one another and do public health outreach and get accurate sex information into the hands of people and ignore all of the attacks from the outside and the gaslighting and all of that.
And when you take a look at that in context, it absolutely translates into what we’ve been seeing going on with COVID in the past five years, COVID outreach, people forming mask blocs and community care circles.
And I’m seeing that as well here in Aotearoa, New Zealand, care circles beginning to form around people who have Long COVID and are being gaslit and are not getting answers in the system and are being denied healthcare.
It’s the same story everywhere, in that people are being left behind, people are getting willfully infected, people are having their experiences denied, but at the same time, these community care circles are beginning to come spring up.
They’re more well established, I think, in countries where COVID has been more rampant. Whereas in the United States, a lot of people are on their fifth and sixth infections, it’s not quite like that here yet because Aotearoa did an incredible job at keeping the disease at bay.
It’s an absolute parallel to what happened with the AIDS crisis and the way people came together to not only help one another and save one another and help each other navigate this catastrophe that we’re living through, but also to fight back the tides of disinformation about the disease and how the disease is spread and what effects it has.
James: After talking to so many people, hearing from so many people, what do you think people who are organizing, you know, these care circles, organizing around COVID-19 protections, precautions now could learn from historical modes of organizing around HIV and AIDS or other issues?
Violet: The movement that we’re looking at right now, in terms of the community care circles and the mask blocs and things like that, is young and it’s beginning and it’s having some growing pains here and there for sure.
These are sort of things that early iterations of the HIV and community care circles went through in the ’80s and the ’90s.
And it’s hard because the United States is this giant, in terms of the way that it reacts to public health and public health diseases.
And countries around the world follow the path of the United States when it comes to these things.
At the beginning of COVID, the United States was in probably one of the most destructive leadership cycles that it had had up until that point and then went through a very fallow period of inactivity and nothing being done. And now it’s about to go through another incredibly destructive cycle of leadership.
I think we have yet to see really what the ramifications are of the past five years of that leadership influencing the world in terms of how it reacts to diseases, public health, and COVID particularly.
That makes it a very different experience than what happened with AIDS and the HIV crisis, where that was just a long period of things like dealing with Reagan and Reaganomics. Um, there was no period of open information or open communication that the Internet had brought into it.
So I think we’re gonna see some really different and interesting developments, but I think we’re also going to see that we’re about to go through a period of intense attacks and intense denial that certainly happened on a smaller scale in a way with the AIDS and HIV crisis in that it was just targeted populations.
Whereas with COVID, they’re trying to attack targeted populations, but it’s actually a global population now that is dealing with this crisis. The estimate is at least 400 million people worldwide dealing with Long COVID.
That isn’t something that they can easily gaslight with homophobia.
I’m just, I hope that people that are doing the organizing and people who are moving forward and people who may lose hope in some of these organizations and some of the movements that are around the world — I hope that they can reflect and look back on what happened with some of the earlier iterations of things like ACT UP and needle exchanges and harm reduction outreach that was done and know that you’ve gotta have hope.
James: Thank you for coming on, Violet. And you can read an excerpt from the COVID Safety Handbook on The Sick Times’ website.
We’ll also link it in the podcast description.
Violet: Thank you so much.
The Sick Times: End-of-year fundraiser results: Thank you for supporting The Sick Times! (20:12)
James: And we also wanted to share a big thank you.
Last week, we wrapped our end-of-year fundraiser and raised over $115,000 with your help.
So Betsy and Miles, I’ll toss it to you both to give sort of a final update on how the fundraiser went.
Betsy: Yeah, so the fundraiser was definitely successful.
We really appreciate everybody who supported it, whether you donated yourself or helped to share it with friends and family members.
The money we’ve raised comes from a few different sources. First and most importantly, nearly $50,000 in small dollar donations from our readers.
And then those were doubled from matching funds and additional support, including a grant from the Disability Visibility Project. They gave us a total of $30,000, which we used partially as matching funds and partially as a direct donation.
We also got matching funds from the NewsMatch program. That was $15,000.
And we got an additional $16,000 in matching funds from Eli Dickinson and Kat Zambon, supporters of The Sick Times.
And we got a couple of bonuses from the NewsMatch program to indicate our success in a lot of people donating as well as securing that additional matching support.
A lot of numbers, but the TLDR is, we were able to raise a lot of money that is gonna really help to support us in 2025 and help us become more sustainable in the long term.
Miles: Yeah, and so as we’ve said in previous episodes, this support is gonna help us better compensate our internal team and make our work more sustainable.
Um, this includes increasing the stipends for people like James and Heather, who are going to be having more time to report and work on bigger projects with The Sick Times.
So we’re really excited about that. It’s going to increase our freelance budget, [of] particular interest, we’re gonna be working with additional editors on larger stories and producing multimedia projects such as videos, and we hope to reach out to more illustrators to help us illustrate stories.
It’ll also help cover costs for our website, reporting tools, as well as a small travel budget so that we can go to different conferences about Long COVID and associated diseases.
So if there are any big upcoming events that you think we should cover in person, please let us know and reach out at editors@thesicktimes.org.
Lastly, it’ll also help us pursue more partnerships with other news organizations as well as other funding opportunities. So we are so thrilled for the success of this fundraiser and so grateful for all of the support, whether you donated, shared our fundraiser, or have just been a supporter in reading articles.
Thank you.
Betsy: We’re currently working to figure out our exact budget for 2025 with our fiscal sponsor and we will put that up on our financial transparency page on our website once that’s done.
Also, we wanted to let folks know the stickers we will be sending to people who donated in this fundraiser were delayed. They got lost in the mail at the end of December with all the holiday mail chaos.
So we have reordered them and we are aiming to send them out by mid-January. We’ll send an update or two over email.
James: Like Miles said, thanks again for everyone who supported our work, you know, regardless of what that’s looked like — whether you’ve donated, whether you’re a listener, a frequent reader, or just somebody who has shown their support for our Long COVID journalism and commentary in whatever way you can.
And next we’ll talk about Long COVID research.
Research (23:36)
[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]
Miles: Today in research, we’ll be looking at a small patient-led study.
It had 13 participants, sort of a case series, and it was published in Nature Communications Medicine.
So it suggested the longer courses of the COVID-19 antiviral drug, Paxlovid, which is typically prescribed for five days, may help some people with Long COVID.
While some participants did not notice a benefit from an extended use of the drug, others experienced full, and I quote, “meaningful reduction in symptoms,” though not all of the benefits of the treatment persisted following the treatment, so the authors wrote that “these cases emphasize the need to study longer courses of the antiviral therapy for Long COVID.”
Betsy: So longer courses in this study specifically meant that people were using Paxlovid from seven and a half to 30 days. Most of them took it for 15 days. So that is a bit longer, obviously, than the five-day course.
So it’s typical for people who are taking Paxlovid as a treatment for acute COVID.
There’s been a lot of interest in research on antivirals for Long COVID, especially with Paxilvid, given that it is an antiviral designed specifically for the SARS-CoV-2 virus.
Although recent research with Paxlovid has been kind of a mixed bag — there were some promising observational studies, but then a clinical trial out of Stanford last summer did not find that Paxlovid alleviated Long COVID symptoms.
So this study is suggesting that maybe we shouldn’t write this off, more research is needed, particularly trying those longer courses as safety and other requirements of trials allow.
Miles: Yeah, and I think there’s been other studies that are looking at longer courses of antivirals.
Betsy: Like the ones at Mount Sinai, looking at HIV antivirals, for example.
Miles: Yeah, so I think it definitely — Paxlovid was made for this five-day acute COVID treatment, so it’s definitely worth looking into these longer courses, especially with these encouraging case series.
Outro (25:35)
James: That’s all we have for you this week. You can stay up to date with The Sick Times’ newsletter and our coverage at thesicktimes.org.
[Instrumental theme song excerpt plays underneath the rest of the podcast]
Miles: We’ll continue reporting the information you need to better practice care.
Betsy: Solidarity with everyone still here.
James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.
Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.
Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed the cover art for our podcast, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.
Thanks for listening and catch you next year.
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