Still Here, December 20: Links and transcript

The cover image for Still Here: A Podcast From The Sick Times. Art by Sophie Dimitriou.

Summary

With little support and no approved treatments, online drug markets are one way that people with Long COVID are seeking to improve their quality of life. In our last episode of 2024, co-hosts Betsy Ladyzhets and Miles Griffis talk with producer James Salanga to recap reporting from freelancer Hannah Buttle about this phenomenon and the current state of potential Long COVID treatments.

Also in this episode: the latest COVID-19 numbers, an update on H5N1, and more funding for Long COVID and myalgic encephalomyelitis (ME) research.

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:

Intro
COVID-19 trends
Looking at overseas pharmacies
Research
Outro

Still Here is an abridged version of The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

Still Here:
The Sick Times: National COVID-19 trends, December 17
CDC wastewater dashboard
Biobot wastewater risk reports
WastewaterSCAN dashboard
The Sick Times: Wastewater surveillance for Covid-19 keeps evolving. Here’s what you need to know.
U.S. free COVID tests: COVID-19 Testing
The Sick Times: With no approved treatments and little support, people with Long COVID turn to online drug markets
Chemical & Engineering News: R&D for long COVID is collapsing
World Health Organization: Substandard and falsified medical products
University of Liverpool: Liverpool COVID-19 Drug Interactions
The Sick Times and Long COVID Justice: Long COVID Essentials series
Long COVID Studies
The Sick Times: Want to enroll in a Long Covid clinical trial? This new project helps track them.
The Sick Times: Research updates, December 17
The Sick Times: NIH announces $147 million in additional Long COVID research funding, new budget details

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. Our end-of-year fundraiser is still ongoing, so your donations from now until Dec. 31 will be matched up to $1,000 thanks to NewsMatch and our generous partners. And get free stickers with your donation!

Support independent Long COVID journalism

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.

[Instrumental ends]

Betsy Ladyzhets: And I’m Betsy Ladyzhets. 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. 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: We share the latest COVID-19 trends.

James: And we talk about one or two of the stories we’ve published on The Sick Times’ website recently. In today’s episode, we’ll be talking about a piece that freelancer Hannah Buttle wrote for The Sick Times about how with no approved treatments and little support, people with Long COVID are turning to online pharmacies and drug markets.

Miles: And we’ll also share some of what’s happening with long COVID research.

In today’s research updates, RECOVER has been given more funding. This is great news, but it still is a small drop in the pool of what research funding for Long COVID needs.

We’ll look at an announcement from the Open Medicine Foundation, which was recently funded to start a study looking for a potential biomarker for myalgic encephalomyelitis, ME. Lots of exciting stuff today in research.

Betsy: Also, we wanted to remind everyone that our end of year fundraiser is still going. So if you donate between now and the end of December, your donation will be doubled thanks to the NewsMatch program and other supporters. You’ll also get stickers in the mail for everybody who donated during this fundraiser. I just wanted to share that in case you hadn’t seen it yet.

So any support is really appreciated. Please help us finish off the year strong.

James: Yeah. And speaking of the end of the year, this is going to be our last episode of the podcast this year before The Sick Times heads on break for the last few weeks of 2024.

So we also just wanted to say thank you to everyone who’s listened. And I wanted to also share some stats from our year wrapped.

Since we started in October, we’ve had people from 30 countries listen [Editor’s note: It’s now 32!]. Most of our listeners are tuning in through Apple Podcasts, so over half. And our episodes have had a total of over 2,000 listens.

You all really enjoyed our first episode, which recaps the NIH RECOVER-Treating Long COVID kickoff, our episode on low-dose naltrexone, and our episode on what Long COVID research might look like under the Trump administration.

So thanks again for tuning in. Let’s get to our COVID forecast.

[Sound of thunderclap and light rain]

COVID-19 forecast (2:33)

Betsy: We are definitely in the start of our winter surge now, as expected by many experts and public health officials. So the most recent wastewater data shows a definitive uptick in the last couple of weeks following Thanksgiving.

And if these trends continue, it seems likely that risk of infection will be higher across the country by the time we get to travel and gatherings at the end of this month.

Currently, the Midwest is seeing the highest COVID levels, followed by the Northeast, according to both wastewater and our limited healthcare data. But there are kind of increases happening across regions.

And so when we say healthcare data, that means test positivity from PCR testing labs that still report that information, as well as emergency department visits from hospitals and inpatient beds of people with COVID at the hospital. All of those metrics are showing increases in the last couple of weeks.

[Also], wastewater numbers are a proxy measurement to look at community trends. It’s not a one-to-one relationship to actual cases or actual infections. You know, we see a lot of these estimates going around, especially during surges of numbers saying like, “Oh, there’s X thousand cases every day,” or one in a hundred, one in fifty, or some other kind of similar number of people in the United States infected with COVID right now. You know, those can be very powerful numbers, but we don’t actually have the information to give that level of precision at this point in the pandemic.

I wish we did, as a long-time data journalist, but we really, really don’t. And so when you see those kinds of estimates going around on social media, it’s important to kind of take that with a grain of salt and think of it more as kind of a level-setter — like, “Okay, a lot of people are sick.”

And sort of conversely, right, when you see things like the CDC’s COVID dashboard reporting that national COVID levels are still low — you know, the CDC, as I’ve reported about in the past, presents its wastewater data in such a way to kind of make COVID disease levels appear lower than other experts would sort of assess them as in comparing to past infections, past waves.

And so it’s important to also take that with a grain of salt and remember as well that data are delayed by a couple of weeks.

Miles: And as always, you can find out more, sort of, about how Betsy and our team puts together updates on wastewater — Betsy also has a great explainer on wastewater, if this is your first time hearing about it — on our website.

Stay safe out there this holiday season.

Betsy: Also, other respiratory viruses are continuing to spread, including both seasonal flu and the bird flu. There was some news recently around the CDC being unable to confirm a suspected case of a child in California who was thought to maybe have bird flu after drinking raw milk. [Editor’s note: California Governor Gavin Newsom declared a state of emergency due to H5N1 on Dec. 18, the day after this was recorded.]

So they weren’t able to actually confirm that with a positive test, but still kind of shows the importance of continuing to take precautions, continuing to wear high quality masks. [Editor’s note: There hasn’t yet been confirmed human-to-human H5N1 transmission at this time.]

Also, don’t drink raw milk. Not a great idea right now — or anytime, but especially not right now.

Like, that’s — so we don’t give medical advice here, but I feel, like, pretty confident a lot of experts would say that.

James: Yeah. So sorry to all the artisan food junkies out there.

And speaking of safety, if you are, you know, testing before gathering and you need to replenish your supply, you can still get your four free rapid tests per household in the U.S. at covidtests.gov.

After a quick musical break, we’ll head to our top story, where we’re talking about how with no approved treatments and little support, people with Long COVID are turning to online pharmacies and drug markets.

[instrumental segment of theme song plays]

The Sick Times: With no approved treatments and little support, people with Long COVID turn to online drug markets (5:18)

James: There are plenty of barriers to getting prescribed medications to help mitigate Long COVID symptoms. For one thing, there are no officially approved treatments at this time.

Other big barriers include stigma against the disease and the lack of knowledge that doctors still have about available drugs that could offer relief, such as low-dose naltrexone.

Insurance is another obstacle. Even when doctors are willing to prescribe off-label drugs, insurance may not cover them.

So, many people with Long COVID have taken to importing medications from overseas pharmacies, many located in India.

For The Sick Times, freelancer Hannah Buttle spoke with several people with Long COVID who had used those pharmacies as well as medical experts. Betsy, you know, with this lack of officially approved treatments right now, especially in terms of research or upcoming treatments, what does the treatment landscape for Long COVID look like?

Betsy: So as a lot of people among our readers or listeners probably know, there’s been pretty slow progress on clinical trials for Long COVID, and there are no drugs officially approved as of yet in the U.S. or in other countries.

And there are many challenges with this. There’s been limited funding from the federal government. The RECOVER program — that is, the U.S.’s flagship Long COVID research program, run by the National Institutes of Health or NIH — has focused mostly on observational research for the first couple of years of its work. So that’s a lot of symptom tracking, looking at electronic health records, things of that nature. They are working on clinical trials now, but that kind of took a while.

And meanwhile, there’s been limited interest from the pharmaceutical industry in running drug trials for Long COVID. There is a great piece in Chemical and Engineering News, or C&EN, a couple months ago that kind of talked more about that that we can link to.

And so just like checking up on this landscape for her story, Hannah did an analysis looking at clinicaltrials.gov, which is the federal registry of clinical trials, and found that fewer than a quarter of trials for Long COVID are actually drug interventions.

A lot of them are other kinds of research that is not moving forward as quickly towards actual new treatments.

James: The one thing that has also come up with just looking for treatments in general is that not every treatment can be “one-size-fits-all” for people with Long COVID because there’s so many different manifestations of the illness. You know, there have been a variety of past unapproved treatments that people in the community have discussed and tried.

Miles, what are some of those treatments?

Miles: One a couple of years that made a lot of headlines was H.E.L.P. apheresis. It’s an expensive procedure that basically removes blood from the veins, filters the blood and returns the filtered blood to the body.

So [behind] this was sort of the idea that it could help sort of address microclots, which there’s a lot of evidence of in people with Long COVID and myalgic encephalomyelitis.

So people were flying, I think, to, like, Cyprus and Germany to do it, and, you know, some people claimed it helped and others didn’t. Um, and without bigger trials, it’s really hard to sort of say whether or not it was working.

Another is triple anticoagulant therapy, [in] which some medical providers and researchers believed taking three sorts of blood thinner or anticoagulants such as aspirin, clopidogrel, and another layer like apixaban could help break down these blood clots called microclots. But with this type of treatment, there is also a very high bleeding risk, so you really want to be under the supervision of a doctor who can really monitor all these things.

Earlier in the pandemic, it was — these treatments, because they carry a higher risk, some of the coverage of it very much sort of blamed people with Long COVID for taking these types of unproven treatments.

And that was really irresponsible, in my opinion, of the media and, and journalists because it’s very much — I mean, people are super, super desperate for some relief, you know, there’s a huge and severe financial burden with Long COVID, it can be completely disabling and debilitating, so we really can’t blame people for trying to get better when there is slow research, little funding, and a huge stigma against people with Long COVID in society. Many of, you know, a lot of the stigma is saying that “It’s a psychological disease and people are faking it” or “They’re too lazy.”

And it’s just a completely irresponsible narrative that the media and society has allowed.

So we really wanted to dive into this story with Hannah because it’s just sort of an extension showing, A, the desperation of the lack of research and what it can cause and what it can lead to, but also just sort of showing that without these unapproved treatments and without good funding and research, people are going to start looking into other treatments.

And what was interesting in this story is a lot of people are looking at drugs that are sort of already in clinical trials right now. So people are trying Truvada or Maraviroc.

So these patients are taking very calculated risks by looking at drugs that are in these clinical trials.It does carry risks if you’re not medically supervised, but again, finding treatment, finding providers who will prescribe things off-label is a really challenging task.

James: Yeah, absolutely. And I mean, you know, I think this story just really highlights that overseas pharmacies are just another way for folks to try something that is not maybe readily available in hopes of potential relief.

And like you were saying, Miles, you know, for a lot of people, including some of the people that Hannah talked with, it’s worth taking the risk.

There’s somebody who Hannah spoke with who lives in Germany and has had Long COVID since 2021, who mentioned that after a few months of difficult symptoms, she said, “If you have to weigh up how I was feeling versus taking an unknown pill, there’s no contest.”

That person ended up ordering a generic version of Truvada, which is medication typically used to treat HIV, from an online pharmacy.

And so, you know, for people who have been doing this, how does that process normally work?

Betsy: Yeah, so the folks that Hannah spoke with who had done this talked about purchasing drugs without a prescription from either national online pharmacies or from India, often using online marketplace services. India Mart was one common one that is mentioned in the story.

India is the world’s largest exporter of generic pharmaceutical drugs.

So Hannah writes in the piece that a lot of the drugs that we might get from a standard pharmacy in the United States are made in India, but the process for how they get into the pharmacy is very different from kind of ordering directly from a supplier based in the country. So, you know, with limited advice or limited guidance from medical providers, often people might get advice from social media groups to try to understand potential dosage, side effects to watch out for, things like that.

You know, as Miles mentioned, a lot of the medications that people are trying are things that are in clinical trials right now, like antivirals.

However, you know, these drugs that are in trials are generally not widely available to the general population and also can be very expensive.

So Paxlovid, for example, which is one thing people have tried, can cost as much as $1400 for a five-day course in the United States if you don’t have a prescription from an acute COVID case. Whereas if you buy a generic version of Paxlovid from India, it can be closer to $100.

So that is a really significant price difference that helps to also demonstrate why people might try this kind of thing.

You know, in recognizing that people are trying this and hoping to offer some guidance for folks who are already kind of in this position, Hannah’s story includes a link to a checklist from the World Health Organization for engaging the safety of medicines purchased online.

Experts that she spoke with also recommended, if you’re doing something like this, to look out for unusual credit card activity, be careful about checking security seals on any packaging. Be careful on checking batch numbers and expiration dates, making sure those things match. Those kinds of things can help verify legitimacy of something purchased online.

She also linked to a resource from the University of Liverpool that is a drug interactions checker, so you could check, for example, if you’re taking Paxlovid or trying Paxlovid, how that might intersect with other medications.

So again, I mean, I think as Miles was saying, we know a lot of other publications, media outlets have covered this kind of thing less responsibly. [dog barks]

And so with The Sick Times, you know, our intent, really, is always to, like, put perspectives of people with Long COVID first and foremost and sort of acknowledge this is a really tough situation where we have no approved treatments and people are really, really suffering with their symptoms.

You know, we’re not trying to give medical advice. We’re not trying to tell you what to do or anything of that nature, but just to kind of offer resources and explain what’s going on.

Also, my dog was barking a bit. So sorry if that got in the recording.

James: No, that’s OK. [chuckles] Yeah, it did, but it’s fine. You know, it’s a, it’s a cameo.

Speaking of providing resources or just providing more context so that people just have more information, you know, what are some other ways that people can maybe improve their quality of life when we don’t currently have approved treatments for Long COVID?

Miles: Yeah, so I think this is a thing that gets sort of looked over sometimes, especially in mainstream stories. Like, there are a lot of related diseases that people are diagnosed with who have Long COVID, so there are some medications that could be prescribed on-label for those other diagnoses.

But to get those, of course, you have to have access to health care, find providers who are knowledgeable on things like dysautonomia, mast cell activation syndrome, myalgic encephalomyelitis, ME, and other similar related diseases. That can be a huge challenge in and of itself.

There are some — it seems like there are some spaces sort of starting to fill this need. RTHM, R-T-H-M, is a U.S. online-based clinic. They offer a prescribing service for certain off-label medications for Long COVID. Those include low-dose naltrexone, beta blockers for dysautonomia, and ketotifen for mast cell activation syndrome.

So this is one way. I know they’re not in every state, but it seems like this will be more of a trend in the future, especially because it can be so hard to access [medication].

And then in the UK, those with a confirmed diagnosis for Long COVID or ME can buy low-dose naltrexone through Dickson’s Chemist.

Experts I’ve spoken with have mentioned, you know, if you do have a provider who might be open-minded and believes and understands research on Long COVID, bring them more articles on Long COVID.

If you think you might benefit from a certain drug like low-dose naltrexone or a beta blocker for dysautonomia, there’s a bunch of resources on those. We’ll have more of those in our Long COVID essentials series.

There’s kind of different ways, but sometimes treating these different overlapping diagnoses, while they don’t get to the root cause, can improve some quality of life.

And then, yeah, another option is to look into clinical trials. So if you’re eligible for different trials, you’ll be able to possibly undergo some of these treatments.

However, you could get the placebo if it’s a blinded trial. But you are still a part of a really important clinical trial that will help determine whether drugs are useful for Long COVID or not.

And to do that, you can look at longcovidstudies.net. It’s a really helpful database that we’ve written about. You can find our coverage on our website about that. But it sort of just compiles all of the clinical trials on Long COVID and makes it much more accessible and easy to reach out to the organizers of those trials.

James: As Chris, who has had Long COVID since 2020, told Hannah, you know, “It’s easy to depict people as reckless and not understanding the risks, but that’s not really the case at all. Everyone understands the risks. They’re doing it because they’ve got no choice.”

You can read Hannah’s reporting on our website.

And next, we’ll get to a research update.

Research (18:32)

[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]

Betsy: So one big update from this past week is that the NIH’s RECOVER program is receiving an additional $147 million from the NIH kind of reallocated from the agency’s overall budget. And that adds onto another $515 million that was allocated in a similar process at the beginning of 2024.

So basically, the NIH has added $662 million to what was initially $1.15 million allocated by Congress, you know, a couple of years ago earlier in the pandemic. A lot of numbers in that sentence, I’m sorry.

But the TLDR is, RECOVER is getting a bit more money, which — the majority of that is going to go to more clinical trials, relating to all of what we were just talking about. We really need more trials. So it’s good news to see a bit more funding that’s going to support this from RECOVER.

And, you know, according to the press release that NIH put out, they’re going to be spending this from 2025 through 2029 to kind of run more trials. And some of the funding also is going to go to other parts of RECOVER, such as continuing some of their observational research and doing more pathobiology studies, as well as making samples available for other researchers from Biobank. So that’s like tissue samples from people with Long COVID that have been contributed over the last few years.

So you can read more about that announcement and all of our past RECOVER coverage — we follow this program very closely and we’ve written a lot about it — and you can find that on our website.

Miles: In other news, there’s more funding for myalgic encephalomyelitis, ME, the Open Medicine Foundation, a leading research group studying ME, announced 800,000 [dollars] in initial funding to study a potential blood-based biomarker for the disease.

They say this is about a third of the funding that they will need, so they will still need twice as much funding to complete this. But this is a really exciting announcement that’s going to start getting this research underway.

The study is called BioQuest. It will assess over 10,000 proteins and metabolites in the blood samples of 1,200 participants aiming to identify markers unique to ME with the help of AI and other advanced techniques.

The Open Medicine Foundation released a statement saying, “The goal of BioQuest is to identify a biochemical signature for ME/CFS that can be conveniently evaluated through a blood test and would differentiate ME/CFS from other similar conditions.”

The news was met with a lot of excitement within long COVID ME associated traditions communities. So hopefully they will get more funding and can complete this full study and will have a much better understanding of some potential markers that could differentiate ME.

Betsy: OMF’s website was down for a bit, a few minutes or an hour or two or something, because so many people were trying to donate to support this project. So that’s certainly a nice marker of enthusiasm.

Miles: That’s amazing. I didn’t know that.

Betsy: Yeah, they sent out an email that was like, “If you were trying to visit our site, it’s back now.”

I was like, “Oh, that’s great.”

Also speaking of fundraising, The Sick Times is also still fundraising. Ours is much smaller.

[Betsy and Miles laugh]

Journalism is cheaper than research, but it still costs some money because we have to pay ourselves and our writers.

So as of today, December 17th, as we’re recording this, we’re at around $36,000, which is around three-fifths of the way through our goal of $50,000. And all donations will be matched, thanks to the NewsMatch program from the Institute for Nonprofit News and other supporters who are helping us out with this.

So we really appreciate all support, no matter how much.

And donations of any amount, for people who’ve contributed, we’re going to send you some stickers in the mail. So if you shared your address, look out for that in the next few weeks. If you don’t want to share your address, that’s also fine. This is voluntary. We just wanted to say thank you.

And of course, we know, you know, not everyone is able to donate, so anything you can do to help share the fundraiser, share our articles, share the podcast, shout us out on social media, all of that stuff really goes a long way to spreading the word about us and the work that we’re doing.

Outro (22:44)

James: Yeah, that would be a great way to end the year — seeing your support wherever you can show it, whether that be through a donation or just shouting us out in your end-of-year round-ups as you’re finishing up the year.

That’s all we have for you this week and for 2024.

We do have a newsletter next Tuesday, so you can stay tuned for that.

We’ll still be in your inbox one more time, maybe a couple more times before the year wraps.

Betsy: Wow. Yes.

James: But yeah, you can stay up to date with The Sick Times’ newsletter and 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.James: Yeah, that would be a great way to end the year — seeing your support wherever you can show it, whether that be through a donation or just shouting us out in your end-of-year round-ups as you’re finishing up the year.