In this episode of Still Here, hosts Betsy Ladyzhets and Miles Griffis talk about the latest updates from the U.S. Department of Health and Human Services and their efforts on Long COVID, as well as the criticisms they face from members of the community. Subscribe to Still Here wherever you get your podcasts, and leave us a review, telling us what you think of this episode.
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Intro
Melanie Marich: Welcome to Still Here, a Long COVID News and Commentary podcast from The Sick Times. In this episode, we’re talking about the federal government, what they’re doing to address Long COVID and what critics have to say about it.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We are the co-founders of The Sick Times,
Melanie Marich: and I’m Melanie Marich,
the podcast producer for Still Here.
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.
Betsy Ladyzhets: But here at The Sick [00:00:30] Times, we’re bringing you the latest news and commentary that matters to the Long COVID community
Miles Griffis: without pandemic, denial, minimizing, or gaslighting.
Melanie Marich: For today’s episode, we’re catching a conversation between Miles and Betsy about the long awaited Long COVID website from the US Department of Health and Human Services. The website comes six months after Health Secretary Robert F. Kennedy Jr. And his department made big promises about supporting people with the disease.
Robert F. Kennedy Jr.: So this is partially a listening session, [00:01:00] but it’s a lot more than that. It’s a session in which we are seeking to find alternatives. We’re seeking to find solutions.
Melanie Marich: Betsy and Miles have both been covering the story for more than a year. So if you wanna dive deeper into anything they mention, we’ll include links to all these stories in the show notes.
Here’s that conversation.
Interview
Miles Griffis: So we are now six years into this pandemic. This is presidential administration three of the pandemic. Uh, we’ve lost over a million Americans to COVID-19 and many [00:01:30] millions more have been disabled by COVID-19 and Long COVID. What is the federal government’s current position on Long COVID and this public health crisis?
Betsy Ladyzhets: Yeah, so the second Trump term honestly has been rather contradictory on COVID-19 and Long COVID. There has been a lot of messaging in this as there was honestly in the prior Trump administration, about the pandemic being over, being in the past tense being nothing to worry about. One notable thing that happened kind of [00:02:00] early in the second term that we covered last year,
was the Trump administration took the website covid.gov, which used to be like a resource page for things like where to get paxlovid, or you used to be able to order free rapid tests, things of that nature, and literally replaced it with a page just like spouting the lab leak theory, which we’re not gonna get into right now, but I think there’s a lot of great evidence showing why, you know, most likely the Coronavirus had a natural origin and part of that [00:02:30] page also was saying, oh, it’s just a cold.
It’s nothing to worry about. But then at the same time, the page also saying, oh, this is a really dangerous pathogen, and like, we should be so mad at China for releasing this into the world. So even sort of on that one website, there were these contradictions, and so we see this also with how the administration has talked about Long COVID, where Health Secretary Robert F.
Kennedy Jr. Has talked about it and has said that he has family members who have been impacted by [00:03:00] Long COVID, as well as other related and similar, uh, complex chronic diseases, and says that it’s very serious, it needs to be recognized.
Robert F. Kennedy Jr.: Today we’re launching a Long COVID consortium and it’s in response to.
Uh, the interest from a couple of senators, Senator Young and Senator Marshall here, who have a deep interest and have been very, talking a lot about this issue, but also in response to my own personal experience and the [00:03:30] calls that I get almost every day from people who are suffering from Long COVID across the country and don’t know where to go and feel that their voices aren’t being listened to, including members of my own family.
Betsy Ladyzhets: But then of course you never see him doing things like wearing a high quality mask in public or really acknowledging that the coronavirus is still spreading and still infecting and disabling people on a regular basis.
Miles Griffis: Yeah, well said. That website was a very like, sort of early indicator [00:04:00] I think we got, um, I think a lot of people also have sort of talked about it, like the looks of it, it looks like a romance novel cover of Trump.
Um, and it’s just like a very, a very interesting page, um, to sort of take over when there were great resources on it.
Betsy Ladyzhets: Yeah, The Sick Times really doesn’t do the in-depth political analysis, but I would recommend, um, our friends at the podcast Death Panel who have done some really great analysis on specifically this area [00:04:30] of people who the Trump administration has put into power and the various ways in which they purport really dangerous policies.
Miles Griffis: So, yeah. Betsy, last September, I remember we got an email like the day before, or two days before, there was a HHS Long COVID round table, um, where Health Secretary, RFK Junior made big promises about supporting people with the disease and similar illnesses. Uh, refresh our memory a little bit [00:05:00] about what happened at that round table and what the main promises were.
Betsy Ladyzhets: So this event included basically two panels of experts, a bunch of names that people in the Long COVID community recognized were part of these panels. Um, people like Akiko Iwasaki at Yale, David Putrino from Mount Sinai, Michael Peluso from UCSF, Ziyad Al-Aly from Washington University in St. Louis. And then of course there were
quite a few government officials and representatives there. So when I was [00:05:30] interviewing people about this round table back in the fall, folks kind of commented on how unique it was to see not only Kennedy himself, but also the head of the NIH, Jay Bhattacharya, the head of the FDA, Marty Makary and other people from the HHS.
You know, all around one table all talking about this issue, plus a couple of senators and congresspeople who, you know, talked about having family members or having loved ones who have Long COVID and having like a personal interest in this disease. We got [00:06:00] all of these influential people in one room and there were two panel discussions that were live streamed.
My understanding is that there were also other conversations that happened off the record as journalists call it, like not in the public eye. But the researchers talking to the government officials, and there was some sense of people sharing each other’s initiatives and research projects and brainstorming and things like that.
And so the people who were there representing the federal government really did make some pretty big commitments. One of the most notable ones [00:06:30] was from Jason Roos, who was then the acting director of a smaller agency called ARPA H, which stands for Advanced Research Projects in Health. It is a newer agency that was started in 2022 that is designed specifically to tackle high risk, high reward research.
So obviously people would like to see them do something on Long COVID. They think that this type of agency is a, is a good fit. And so Jason Roos, the acting director of ARPA H at that time, said at the [00:07:00] round table that ARPA H would have some kind of plan for advancing Long COVID research on the order of weeks.
Not months. And that was something that people really pointed to in the now months afterwards, there were also some commitments from Secretary Kennedy himself, for example, he mentioned starting what he called a Long COVID consortium. Uh, it’s a little unclear what he meant by that. We haven’t really seen any detail since then of who is on this consortium or what it’s going to do, or how it [00:07:30] might be distinguished from other federal efforts and projects.
And there was also some discussion of helping to raise awareness about Long COVID, publishing a new public website, which, as we have seen, they have ended up doing, um, helping people find resources, helping people find physicians, as well as some discussion about the FDA helping to give more direction to pharmaceutical companies who might want to advance drug candidates for Long COVID or helping out [00:08:00] researchers who are running clinical trials. Some of the scientists who were at these round tables talked about the challenges that they have faced with things like getting their studies reviewed by the FDA and interfacing with reviewers who don’t really know that much about Long COVID and sort of discussing what the federal government or what the FDA could do to improve that situation.
Miles Griffis: What does the federal government currently have going on with, uh, you know, what are the programs right now for Long COVID and COVID-19? [00:08:30] What currently exists?
Betsy Ladyzhets: Yeah, so the big one of course is NIH RECOVER, which is the giant Long COVID research program run by the National Institutes of Health. Um, RECOVER has many, many facets.
And then meanwhile, there’s a new round of trials under the initiative called RECOVER Treating Long COVID or RECOVER TLC, uh, which are getting started summer. So that’s kind of the big research effort. There are also some smaller programs. So for example, there’s an initiative called Cure [00:09:00] ID, which is a joint program of the FDA and the NIH, and that aims to compile case reports
from people with Long COVID as well as some people with other complex chronic diseases. And so this is basically like a very detailed survey that people can take to report out what they’ve been trying to try and improve their symptoms and what they’ve found helpful or not helpful. So these data are being collected.
There are some surveys that the CDC does. There are a couple of annual epidemiology research programs that [00:09:30] include Long COVID questions in one form or another. And so those generate some data about about how many people in the United States have Long COVID. And then another one that I think has maybe flown under the radar but has had a bit of a, a bigger impact is a program from AHRQ, which is the Agency for Healthcare Research and Quality.
They have supported a grant program for clinics that are treating people with Long COVID and, and so this has helped to both keep some of these clinics open when [00:10:00] they might not have been able to keep seeing people otherwise and has also helped advance like medical education on Long COVID.
Miles Griffis: So you spoke a little bit about the Department of Health and Human Services website that was published recently.
Can you tell us a little bit more about that website and some of the criticisms, praise, et cetera, that it’s received?
Betsy Ladyzhets: So this website, I think, is intended to be a tool to both help raise awareness about Long COVID and also serve as a resource [00:10:30] for people who have the disease, or maybe people who think they might have Long COVID, kind of get them started.
So it includes a basic definition of Long COVID. It has some basic stats on Long COVID. The page says that it impacts. About five to seven% of US adults, which appears to be a statistic from a CDC survey. It has some links to different government resources. So for example, it links to the Cure ID survey and where people can self-report treatments that they’re trying for Long COVID. [00:11:00] It also links to a page that talks about medical resources, and that page features the handbook from CORE, the Cohen Center for Recovery from Complex Chronic Illness at Mount Sinai. So that recent guide for healthcare providers is featured indirectly. It’s like you have to click a link and then you find it on another page, but it’s highlighted on there on the HHS site.
And then there are some handset upcoming programs, which for the most part are not just for Long COVID, but are for the kind of broader category [00:11:30] of infection associated chronic conditions, so other IACCs. And I think it’s important to note that some of this language and some of these like hints at upcoming programs are not actually new to the Long COVID website.
A lot of them were actually announced in December when the HHS had a similar round table event on Lyme disease. And so it seems that work that the HHS is doing to help raise awareness and support research and support resources [00:12:00] for people with these diseases, uh, is kind of overlapping between Long COVID, Lyme, um, and then also other IACCs potentially.
Yeah, so I would say there is also some praise for this site. I think people like the way that Long COVID is characterized, the site is pretty clear that this is a complex disease, that it can have tons of different symptoms and impact different body systems. One advocate who I spoke to, Froglet [00:12:30] Taylor, did mention that they think the page should specify that Long COVID is a patient created term as opposed to other terms that could be used to refer to.
Same thing like PASQ or post-acute sequelae of SARS-CoV-2 is when you often see in like the medical literature, but people in the patient community prefer Long COVID. Another critique that I heard from Devin Russell, who is the director of the Long COVID Foundation and also was a speaker at the round table event in September, was [00:13:00] saying he thinks the page should make it more clear
what are the dates of the statistics, uh, that are included, because the five to seven percent number is actually a couple of years old at this point. So the current number of people with Long COVID may be higher. Um, and then Russell also made the point that the page doesn’t discuss Long COVID in children, which we also know is a huge issue.
And there are statistics and studies, of course that could be cited and pulled from there that could be added. And then another big point of [00:13:30] critique that I heard is this section called Gold Standard Science, which links out to Cure ID and links out to clinical trials.gov. And as I mentioned, direct
links out to the guide from CORE at Mount Sinai. Gold standard Science as a term is something that has been used a lot by the Trump administration, by the HHS under RFK Junior, and in my story I cite recent op-ed in Undark that sort of critiques how the HHS and how the administration is using this term, saying that, you know, it [00:14:00] has a very specific context in medical research.
And it’s being used out of context and being used to stand in for something. And indeed, this page doesn’t actually link to specific examples of clinical trials or of scientific studies. It links out to like the entire website, clinical trials.gov, when indeed, there are specific trials you could point to.
There is even Anisia Corona, who’s an entrepreneur and founder who’s developing a Long COVID product, uh, made the point [00:14:30] that there’s a site called Long COVID studies created by patient researcher Ezra Spire, that actually specifically filters from clinical trials.gov to show you Long COVID clinical trials and is developed to be more user-friendly for people with Long COVID and stuff like that.
So, you know, HHS could have linked to this rather than the clinical trials.gov page itself, or could have linked to specific studies or specific results. Um, so that’s one kind of critique that it seems like [00:15:00] this site could have been pulling more from existing resources that people in the Long COVID community have developed or rely on.
And instead, a lot of it almost seems like placeholders where something more specific perhaps could go there later.
Miles Griffis: Betsy, a lot of this is reminding me of the quote from Corona and the story that sort of talked about how the HHS is sort of reinventing the wheel here and how a lot of these initiatives, or like a lot of these resources, uh, already exist within the [00:15:30] community, and a lot of them were made by people with Long COVID and other IACCs.
Um, it also reminds me of the closing of the office of Long COVID more than a year ago now in early 2025. This was an HHS office, uh, that was described sort of as the quarterback within the federal government and its response to Long COVID. So the Trump administration closed this office in an executive order.
Which really like ended a lot of the federal response and then sort [00:16:00] of six-ish months later, the round table started. So with all that context, since all this time that has passed, people you spoke with, did they see this as sort of the HHS reinventing the wheel, or are they actually offering new perspectives and resources for people?
Betsy Ladyzhets: People have different opinions about this, of course. I think some people definitely do feel that way and office of Long COVID Research and Practice was doing work like this and was talking to advocates, was talking to researchers, was [00:16:30] coordinating across different parts of the federal government and
also had been developing expertise in Long COVID, which is not an easy thing to do. I think one thing that once a source pointed out to me was when we had this office, there were a handful of people whose full-time job was Long COVID. It was not that many people, it was a very small office. They didn’t have a lot of resources, but still it was a couple of dedicated people.
And now as far as I can tell, [00:17:00] we don’t necessarily have that. Maybe we will have that soon, I hope. I hope that that is the case. I hope that there will dedicated staff at HHS or at ARPA H or at the CDC, um, but currently it’s a little hard to tell. And one thing that I heard from multiple people, I talked to both researchers and advocates.
Who were involved with the Roundtable and who have tried to continue advising the federal government was, they’re like not quite sure who to talk to. Um, you know, like [00:17:30] Ziyad Al-Aly, who was a speaker at the, at the Roundtable event, um, who’s, uh, at the Washington University in St. Louis told me he, he tried to reach out.
He had a couple of emails of people at HHS who he thought were involved with Long COVID. Um, and then he wasn’t really peering back, and then it seems like one of them maybe is no longer at HHS. It’s very hard to tell like, who is actually working on this, but the inconsistency is tough. And there’s also a sense of like lack of transparency.
If you look at things like, if. [00:18:00] The Long COVID Consortium that Kennedy described at the Roundtable event and also has brought up in a Senate hearing. There’s no information about who’s going to be part of this group or what it’s going to do, and similarly with the resources on the website, there’s this promise of more resources to come.
There’s promise of some kind of clinician locator tool that is. People with Long COVID and other IACCs will be able to use to find credible doctors and medical care [00:18:30] providers. There’s no sense of like, can people submit recommendations? Can people share their providers? Can they submit reviews? Can they submit information about are doctors like masking and their offices and appointments?
I think a lot of people would really like to contribute and would like to share all of these great resources that already exist currently. It’s very unclear how to do that, just as it’s unclear even for people who have had some degree of interaction with the federal [00:19:00] government, whether they were at the round table or something else.
I think some folks are having a hard time just like keeping in touch and keeping the ball rolling, so to speak.
Miles Griffis: Okay, so Betsy. I think one thing that’s important to be clear about in this story is with the launch of this website, was there any announcement of like new funds for research or support or anything for Long COVID?
Betsy Ladyzhets: No, nothing new. Even the hints at new programs are not actually new because they were also on the Lyme website, which was posted [00:19:30] in December. As with many things in this story, I think people have different reactions to it. Some of the researchers and advocates I spoke to were very disappointed or very skeptical, or really just like think that the Trump administration or the HHS under RFK Jr will do anything meaningful for people with Long COVID.
However, there are people who think that this is like a promising start that more things are happening behind the scenes. We can expect further progress in the future. One thing [00:20:00] that David Putrino said that really stuck out to me was that at least from his perspective, from where he is standing at CORE,
which is this leading clinic, serving people and running a bunch of clinical trials at Mount Sinai. He said he has had more engagement with HHS under this administration than under the Biden administration. So for someone like him who is doing a lot to advance Long COVID research, I, I do think that’s a worthwhile comment.
That’s why I put it in the story. And so I think that it’s not [00:20:30] nothing that conversations are happening however. You know, Long COVID is a giant public health crisis. It impacts millions and millions of people. So there always could be more, it always could be going faster. Whatever is being done at any level is not enough.
Miles Griffis: Or finally, Betsy, so you and I have been on this beat for a while now. Um, since we first started reporting on Trump last year. What are you paying attention to in the next weeks, months? Any hints of what might be ahead?
Betsy Ladyzhets: Yeah, I’m definitely curious to see what happens at ARPA [00:21:00] H. Hopefully something is still gonna happen there.
You know, I think I am gonna set a reminder for myself to check back on this page on a regular basis and see if they update it, see if they add more stuff. One thing that I have brought up as a concern about this website and about RFK Junior and Long COVID of course, is we know that Kennedy has a history of.
Peddling misinformation specifically around vaccines, but also around things like HIV-AIDS and other chronic diseases, other health [00:21:30] areas that intersect with Long COVID and with I accs. So definitely we will be looking out for federal government pages that spread misinformation about Long COVID because we know they have done it for COVID-19 itself as we were talking about earlier.
And I think there’s also a concern with something like a clinician locator tool that it might highlight or promote physicians who maybe you’re not actually reliable medical care providers. So I think there [00:22:00] is a huge history and a huge kind of warning to these are not people who should be giving medical advice.
So it’s not really something they have done so far. There was kind of some conversation at the Roundtable event that was kind of leaning into anti-vax discussion, but honestly it wasn’t taken too far in comparison to comments that Kennedy has made in other places and at other times. Yeah, so I, I think that’s definitely something we’ll have to keep an eye on.
We’re gonna keep covering [00:22:30] this, like, please send us tips if you’re listening to this and you know, something that we haven’t talked about. You can find our emails, Miles and my’s Signal contacts also are linked in this story and in other stories we’ve done covering the Trump administration. So you can reach out to us there if you would like to chat.
Research updates
Melanie Marich: To wrap up today’s episode, here’s some of the latest in Long COVID research updates. This is an excerpt from our weekly newsletter, so be sure to check those out there. And as always, if you wanna learn more, [00:23:00] links will be in the show notes.
Miles Griffis: We have an update on the heart failure drug Ivabradine for Long COVID and POTS, or postural orthostatic tachycardia syndrome.
A preliminary study showed that Ivabradine did not significantly improve symptoms for people with Long COVID in POTS according to results from researchers in the recover cohort. The drug did however, help lower heart rate, but it didn’t lead to a noticeable symptom improvement. Stay tuned for more updates when the full [00:23:30] paper is published.
Betsy Ladyzhets: Injecting mice with autoantibodies from people with Long COVID causes what researchers call pain like behavior in the animals. Autoantibodies are rogue proteins that attack the body, and the study authors concluded that these rogue proteins may contribute to developing Long COVID. The authors of the study, which was published recently in Cell Reports Medicine, wrote that these findings, quote could open avenues for precision immunotherapy in Long COVID. A couple other papers have also found similar [00:24:00] findings.
Miles Griffis: Lastly, there’s a new clinical trial that is accepting participants from home. The clinical trial is testing lumbrokinase, a supplement known for helping with clotting issues. It is looking for participants with Long COVID, myalgic encephomyelitis, and post-treatment Lyme disease, who will take the supplement for six weeks to see if it helps with symptoms.
Participants can enroll from all 50 states in the us. For more information, check out the website or reach out to David Putrino at the email coreresearch@mountsinai.org. [00:24:30]
Outro
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we will continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone Still Here.
Melanie Marich: 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 [00:25:00] episode is The Rude Mechanical Orchestra’s Rendition of Which Side Are You On originally by Florence Reese.
I’m Melanie Marich and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover Art. Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders. Thanks for listening.
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