Summary
Sam Pearce, a Cape Town-based writer living with myalgic encephalomyelitis (ME), says it’s high time for South Africa and other countries to recognize the knowledge and knowledge of those living with invisible illnesses, including ME and Long COVID. In this episode, Pearce and Mlindeni Gabela, the Long COVID Ambassador for ME and Long COVID Unite South Africa, share their experience organizing SICK Pride, an event creating visibility for their illnesses. Co-hosts Betsy Ladyzhets and Miles Griffis talk with podcast producer James Salanga about The Sick Times’ end of year fundraiser. Also in this episode: the latest COVID-19 numbers, and an $800,000 grant for a clinical trial of a repurposed drug that could help with immune or infection-related dysfunction in Long COVID.
Find our podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript.
Jump to a specific part of the transcript:
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, November 5
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- U.S. free COVID tests: COVID-19 Testing
- The Sick Times: We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
- The Sick Times: Support Long COVID journalism in our end-of-year fundraiser
- The Sick Times: Research updates, November 5
- The Sick Times: Still Here, October 18
- The Sick Times: New Long COVID and complex disease center at Mount Sinai set to be a leader in research, clinical care
Additional audio in this episode:
- Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece)
- Pixabay: Thunder and the beginning of rainfall
Your support helps The Sick Times continue to chronicle the ongoing Long COVID crisis.
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: This is Still Here, a 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: And I’m James Salanga, 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. So we’re bringing you the latest Long COVID news and commentary each week.
Miles: Without pandemic denial, minimizing, or gaslighting.
James: This podcast is an abridged version of our newsletter.
Betsy: And each week, we share the latest on COVID-19 levels in the United States.
James: Then we talk about one or two of the stories we’ve published on The Sick Times website this week. In today’s episode, we’ll talk about making invisible illnesses visible in South Africa and introduce our end of the year fundraiser.
Miles: For today’s research update, we’re covering a new clinical trial that is being launched from Mount Sinai’s new chronic complex illness center, CoRE.
They received $800,000 for a new clinical trial to study a repurposed drug that could help with immune or infection-related dysfunction in Long COVID.
James: Exciting! Now, let’s get to our COVID forecast. How are things looking?
[Sound of thunderclap and light rain]
COVID-19 forecast (1:16)
Betsy: So we are still in kind of a lull between surges, as I have been calling it for the last few weeks.
It’s been a few weeks since the summer surge kind of came down in the United States in terms of COVID levels.
But we have not really seen a winter wave pick up yet, which is kind of surprising, honestly.
I wrote in this week’s COVID trends update that both wastewater levels, and also test positivity rates and emergency department rates for COVID, are all significantly lower right now, kind of, as of late October, than they were around the same time in both 2022 and 2023.
There is still a lot of COVID going around at this time. However, it is kind of good to see that the winter surge either hasn’t quite started yet or is starting off kind of slowly.
In terms of why that is, experts suggest it could be a combination of a really intense summer surge that we had that was kind of higher than usual in a lot of parts of the United States, as well as the latest variant, which is called XEC — it seems to be maybe not as competitive as some other variants that have driven big surges in the past.
So even though things are still kind of a low point right now, many public health experts and scientists who continue to keep track of COVID trends do expect that a winter surge is kind of inevitable, given the combination of colder weather causing people to gather indoors, people traveling for the holidays, and people just failing to collectively take COVID precautions.
So even without variants or other kind of conditions, that behavioral aspect is still likely to contribute to increased cases over the next few weeks.
It just hasn’t started quite yet, as far as we can tell.
Miles: You can find out more about the way we develop our COVID trends on our website.
James: And as I’ve been saying for the past few weeks, for U.S. folks, you can still get your four free rapid tests per household at covidtests.gov.
Probably a good idea to test if you went out for Halloween.
And as we know, there’s the slew of holidays on the horizon, as well as colder weather.
So it’s always a good idea to have as many tests as you can ahead of what is likely to be a winter surge.
After a quick musical break, we’ll talk about efforts to make space for disabled pride and protest in South Africa, and share a little bit more about our end-of-year fundraiser.
[Instrumental segment of theme song plays]
SICK Pride (3:58)
The Sick Times: We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
James: It’s been 55 years since the World Health Organization recognized myalgic encephalomyelitis, or ME, as a neurological disease.
So writer Sam Pearce argues that it’s time for SICK Pride, to help highlight not only ME, but the ongoing risk of mass disability due to repeated SARS-CoV-2 infections.
Her and her colleague, Mlindeni Gabela, are pioneering a new kind of protest in South Africa in service of SICK Pride.
In this context, SICK stands for the Society for the Inclusion of Chronic Knowledge, which the two founded in recognition of the increased importance for the knowledge of people living with chronic illness, especially post-2020.
So we’ll hear a little bit from both of them throughout this segment.
First of all, for Sam and Mlindeni, how is the South African context connected to chronic illness and SICK pride?
Betsy: Sam explains in her essay that the SICK Pride event and the organization are very inspired by, and kind of in the tradition of, HIV/AIDS advocacy in South Africa in the 1980s and ’90s.
She connects the stigma and neglect that people currently living with Long COVID, ME, and other energy-limiting diseases experienced to that experience by people living with HIV in those decades.
[Sam Pearce: President Thabo Mbeki had taken over [from] Nelson Mandela in 1999 and had various conspiracy theories involving big pharma, and more than 3 million people died as a result of Mbeki’s denialism.
There were huge levels of stigma around family members dying of AIDS, and it took the Treatment Action Campaign launching, featuring t-shirts with giant lettering — “HIV positive” — which encouraged people to drop their shame and take up the fight for affordable treatment in the public health system.]
Betsy: And that inspired Sam and Mlindeni to make kind of similar shirts that say, “SICK Pride,” with “SICK” in all-caps as the acronym that they’ve kind of come up with, “Society for the Inclusion of Chronic Knowledge.”
So that, similarly, is intending to proclaim their status as people living with energy-limiting illnesses and raise awareness, to let people know that these are folks who are in their community, in their society, and should be supported.
[Mlindeni Gabela: Hi, I’m Mlindeni Gabela, Long Covid Ambassador for MELCuSA, ME Long Covid Unite South Africa.
How do I connect the South African context to “SICK Pride”? As an African man, when I started getting sick [with Long COVID in 2020], it was so hard for me to go to the clinic. Because when you are a young person going to the clinic, you found in our clinic, in our community, there’s few Black men in the shoes of the clinic ’cause it’s taboo to see a Black man sick.
We classify ourselves, as a Black man, you need to be strong, muscular, you don’t have to show that we are sick. ‘Cause sickness, it shows that you are a weak man and it’s also crucial as an African man or as an African person — if you are sick too long, they associate your sickness [with the idea] that you didn’t do anything with your ancestors, [and] then you need to have a ritual that you need to do, then you will get better.
Then we are struggling with those things ’cause people are so ignorant about Long COVID because of it’s new and when you’ve sick more than two months, they assume that you never do anything to your ancestors [as] an African.]
Miles: Sam’s piece also included a quote from Mark Haywood who co-founded Treatment Action Campaign, discussing the parallels in handling HIV and Long COVID.
He says, “With HIV, we started with the same levels of denial, disinterest and poor engagement by the scientific community.
If it hadn’t been challenged, the course of the AIDS epidemic would have been very different.
We had to create visibility to generate the political will to create resources.”
James: Speaking of visibility, this is the second year of SICK, as in the acronym, Pride.
How did the first one go?
Miles: Yeah, so the first one happened November 12th, 2023 and the second one is going to happen [on] November 17th of this month.
Her and Mlindeni didn’t want the event to be focused just on despair, but mostly on joy.
Dr. Uvi Nadoo from Cape Town’s Long COVID Clinic spoke about current research, providing solid reasons for hope, and the event was emceed by Mlindeni sitting down his pajamas. And Sam gave a speech also lying down.
Here’s more from what the organizers had to say.
[Mlindeni: Our first pride, it was so ecstatic.
And I think we took a risk with inviting people ’cause it was our first time, we didn’t know what’s gonna happen.
I was the first person to arrive in the park that day.
Then when I see people coming in numbers, I was so, like, “Thank God, this is happening!” ‘Cause we convinced ourselves, with Sam, that even if it’s five people who are coming, [it doesn’t matter,] as long we did this. But we were so surprised that people came in numbers and people that were so excited.]
[Sam: We were truly blessed with the most magnificent sunny spring day.
I hadn’t been to the Arderne Botanical Gardens in probably 20 years and it was astonishing to arrive there and see everything laid out.
Very forgiving, very gentle crowd.
Ernestine Dean, she’s a beloved Cape Townian singer and ancestral healer, created this beautiful ritual to start. She herself suffers from chronic illness and so she understands.
I’d written a speech in the moment I realized was far too formal and I just said, “I’m so proud of you.”
And that it was necessary for us to be proud of each other for enduring and surviving these relentless disabling symptoms because no one else is being proud of us.
So we need to be proud of each other.]
James: So the theme of this year’s SICK Pride is “Persistence is Resistance.”
How does Sam see SICK Pride as just one of the many ways that sick and disabled people can resist oppression?
Betsy: Sam argues that it is politically vital to get creative about how to protest as people living with energy-limiting diseases like Long COVID and ME.
Here’s what Sam had to say about this year’s SICK Pride and her broader hopes and goals for advocacy around Long COVID, ME and other energy-limiting diseases.
[Sam: We’re asking people to bring songs this year, the ones that sustain them, the poems, the prayers, the pictures that they look at in their room, whatever helps them survive.
In the three decades since I first became ill, now I have absolutely no shame in lying down in public, whenever I need to.
In the bank, on the pavement, it doesn’t matter. On the train station, I will lie down if I have to.
I carry a folding mat and I just lie down. And I don’t care about stairs and I do not apologize for taking up space that my sick body needs.
And I think the more of us do that, the more acceptable it will become.
We need more than ramps, you know.
We need sofas in supermarkets.]
James: This year’s SICK Pride is a COVID-conscious event that, as Miles said, takes place on November 17. It’s outdoors and there are masks required.
You can read Sam’s piece about SICK Pride at our website.
End-of-year fundraiser (12:15)
James: And now we’ll talk a little bit about our end-of-year fundraiser.
Betsy, do you wanna kick it off?
Betsy: Sure. So with our fundraiser, we really wanna emphasize that our mission to cover the Long COVID crisis is as crucial as it was when Miles and I started this publication nearly a year ago.
We have come a long way since November of 2023. We’ve received a lot of donations and a couple of grants that have helped us to set up a small newsroom.
We have expanded from just two people to, now, our team of four people, including James.
And there’s so much we’ve been able to do, but we really need your help, our audience’s help, in continuing this work and making it more sustainable going forward.
If you haven’t already seen our posts and newsletters about this end-of-year fundraiser, let me explain it a little bit.
We are participating in a program called NewsMatch, which is run by the Institute for Nonprofit News, a national organization that really helps nonprofit newsrooms like us to grow and become more sustainable.
Through this program, they really help newsrooms with end-of-year fundraising campaigns.
So with their support, we’re making this our biggest fundraiser of the year.
Donations will be matched by the NewsMatch program up to $1,000 each. And that applies not just to one-time donations, but also to new monthly donations.
For example, if you are able to give us, say, $20, that becomes $40. But if you’re able to make that, say, $20 a month, that actually becomes $240, because they’re going to match it every month for the next year.
So with this fundraiser, we’re aiming to raise about $50,000 from our readers. And NewsMatch will match up to $15,000 of that total.
So we can potentially raise up to $65,000.
Miles: As of Tuesday morning, November 5th, we have raised $9,000.
We are so grateful for everyone who has contributed. Thank you so much.
We recognize that a lot of our listeners and readers won’t be able to donate, and that is okay.
We appreciate you sharing our fundraiser link, talking about it on social media. Leaving our podcast a review is really helpful.
These funds are, you know, this goal of $50,000 that we’re trying to get to will help better compensate our entire team.
Betsy and myself have been working overtime for the last year to bring you these vital stories. And while we’re really grateful for this position, we are sort of just getting by.
We’re on the very low end of a normal sort of media salary for the amount of hours we work.
[Betsy and Miles laugh]
Some would say very, very low.
So we are grateful to be doing this work and we just hope we can make it more sustainable for ourselves and for this project.
It would also give Heather and James, our engagement editor and podcast producer here, more time and more hours to take on larger projects, which means a better — it would also give us a little bit more capacity for our freelance budget to take on, you know, more features and commentary.
And it would also help us with pursuing more partnerships.
While we are a — still a smaller publication, we hope to spread the news about the issues facing people with Long COVID with other news organizations and the way that we’ve been doing that this past year is by collaborating with other publications in our network and outside of it.
James: Some of the partnerships we’ve done this year include co-publication with Them, which covers queer and trans communities in the US. We’ve done co-publication with The 19th, which covers political issues that impact marginalized genders.
And we’ve also done co-publishing with Amsterdam News, which is a local publication based in New York.
Yeah, there’s a lot of potential opportunity for us to be able to expand the kinds of coverage that we’re able to do and hopefully also tell more local stories about people who are living with Long COVID and the many, many ways that COVID continues to touch all of our lives.
And as Miles said, there’s so many ways that you can still support us during this fundraiser, even if you can’t donate, it’s totally fine. Like Miles said, one option is to share this podcast with your friends and to share the link online, and to give us a five-star review to let us know that you appreciate our work.
Miles, are there any other ways that maybe you want to highlight for folks who aren’t able to donate but want to help support us in other ways?
Miles: Yeah, so, you know, to help support us, you can share this fundraiser with a family member or a friend. A lot of people might ask you how they can support people with Long COVID — this is one way.
You can also share our donation page and graphics on social media, that’s also a big help.
And you can also just send us an email at editors@thesicktimes.org and tell us what you find valuable about our work.
We might use your testimonial, if you’re okay with it, in a future email, a podcast episode, or a social media post.
Betsy: Yeah, just to emphasize again, you know, we are looking for donations, so these are not subscriptions.
It is not at all required to contribute financially to read our work.
Like, we really recognize that a lot of people in the Long COVID community are, you know, struggling financially. And so we never want to add to that.
Our stories will never have paywalls.
Everything will always be free to read.
Also, wanted to make sure we mentioned that donations are tax deductible. We are a nonprofit newsroom and we have a 501(c)(3) status thanks to our fiscal sponsor, Muck Rock.
So if that is something that matters to you or helps you out, you can potentially write off a donation on your taxes.
So thank you, everybody, for your support, especially those who have donated or shared the fundraiser or talked about it.
So far, we have been really heartened to see the support just in the last few days since we announced it on November 1st.
So thank you.
James: We really appreciate it.
And you can find the link to support us through a donation via our website and in this podcast description.
Those are our top stories for this week. And next we will have a research update.
Research (18:12)
[Miles’ voice echoes the word “Research” accompanied with a horn sound excerpted from the theme song]
Miles: Yeah, so the big news in research this week, PolyBio Research Foundation awarded Mount Sinai’s CoRE, which we reported on a few weeks ago, $800,000, for a new clinical trial to study the immunosuppressive drug, rapamycin.
Rapamycin is a generic drug.
It’s FDA-approved, and it has been commonly used to prevent organ rejection after kidney transplant.
It also has some anecdotal success for people with myalgic encephalomyelitis.
And then there’s also a clinical trial that began last year in 2023. It’s a small pilot study and it is looking at the effectiveness of rapamycin in people with ME.
At CoRE, in a press release, CoRE head David Putrino said, “Low-dose rapamycin is an exciting drug target that has the potential to directly address some of the immune or infection-related dysfunction that many people with Long COVID are experiencing.”
So it looks like it will begin in early 2025.
I do know that they’ll be looking at it in a low-dose form, which is a common way to take it. It has a long half-life, so people are taking it once a week in a low-dose form.
So it’ll be interesting to see more information come out about this in 2025.
Betsy: My understanding is that one of the reasons why this trial has such a high price tag is because they’re going to be taking samples from people and studying them in a lot of depth to try and understand the, kind of, underlying biology of Long COVID and of how rapamycin might impact symptoms.
So potentially a lot could be learned from this beyond just the kind of trial results themselves, I think.
James: It’s really exciting to see this is in progress, and it’s something that folks can look for on the horizon starting next year.
Outro (20:06)
James: That’s all we have for you this week. You can stay up to date with The Sick Times’ newsletter and coverage at our website, 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 our podcast cover art, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.
Thanks for listening.
Leave a Reply