Summary
In the pilot episode of Still Here: A Podcast From The Sick Times, co-hosts Miles Griffis and Betsy Ladyzhets talk with podcast producer James Salanga about the latest COVID-19 numbers. Engagement editor Heather Hogan joins James, Miles, and Betsy to recap the NIH RECOVER-TLC meeting from last week. And in research, a hopeful update about a nasal spray effective at blocking respiratory viruses — including COVID-19.
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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, October 1
- CDC wastewater dashboard
- Biobot wastewater risk reports
- WastewaterSCAN dashboard
- The Sick Times: ‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals
- The Sick Times: Q&A: NIH Director Dr. Monica Bertagnolli on next steps for RECOVER, future Long COVID research plans, and more
- The Sick Times: Live blog: Following the RECOVER-Treating Long COVID kickoff event
- The Sick Times: “A good step”: Long COVID advocates and researchers respond to the RECOVER-Treating Long COVID meeting
- National Academies Press: Global Functioning in Long COVID
- JAMA Network: Characterizing Long COVID in Children and Adolescents
- The Sick Times: Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper
- NIH RECOVER website
- RECOVER-TLC: Submit a therapeutic to be considered in a clinical trial
- Harvard Gazette: Drug-free nasal spray blocks, neutralizes viruses, bacteria
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.]
Miles Griffis: Many public health authorities are ignoring the ongoing COVID pandemic.
Betsy Ladyzhets: But here at The Sick Times, we’re not. That’s why we’ve been covering the ongoing Long COVID crisis.
[Instrumental ends]
During this mass disabling event, we’ve seen government neglect, uneven distribution of resources, and systemic abandonment of disabled people. Especially those living with Long COVID and other infection-related chronic diseases.
Miles: Over four hundred million people globally are affected by Long COVID after their SARS-CoV-2 infections.
Disabled people are still here. So is COVID.
Betsy: So we’re bringing you the latest Long COVID news and commentary each week.
Miles: Without pandemic denial, minimizing, or gaslighting.
James Salanga: This is Still Here, a podcast from The Sick Times.
[Theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” resumes playing.
“Which side are you on?
Which side are you on?”
Instrumental continues.]
Miles: I’m Miles Griffis.
Betsy: 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.
Betsy: Each week, we’ll share the latest on Long COVID and COVID-19 levels in the United States.
James: I’ll talk with Miles and Betsy about one or two of the stories we’ve published on The Sick Times’ website this week. [In] today’s episode, we’ll be talking about the NIH, or the National Institute of Health, RECOVER-Treating Long COVID meeting kickoff.
We’ll be recapping it and talking about some of the implications of the meeting. And here today to help us talk about the meeting is a special guest.
Heather Hogan: Hi, everybody.
James: That’s Heather Hogan, the Sick Times’ engagement editor. And so you’ll hear from her and all of us later this episode.
Miles: We’ll also share what’s been happening with Long COVID research. In today’s research update, we have some hope. A potential nasal spray showed nearly 100% effectiveness in combating COVID, the flu, and a host of other viruses.
[Theme song instrumental ends.]
James: Just so you know, this is an abridged version of our newsletter … not a perfect copy.
You can sign up for our full newsletter at thesicktimes.org/newsletter.
If you have anything you want to share with us, you can email us at editors@thesicktimes.org.
Betsy: One last disclaimer: We aren’t doctors, so we are not dispensing medical advice.
James: But we will be talking about our COVID forecast.
[Sound of thunderclap and light rain]
COVID-19 forecast (2:15)
Betsy: Yeah, so this week’s data show that the summer’s COVID surge is continuing to wane. The wastewater numbers, as well as numbers from hospitals and testing labs that are still reporting PCR testing data to the CDC, all of that shows a pretty significant decline in the last month.
But we’re still at, you know, higher levels just because the summer surge was so high.
Wastewater data from both the CDC and WastewaterSCAN, which are two of the main sources I look at for national data, both show that we’re at kind of a similar position now to this time last year in terms of, like, national averages of COVID levels in sewage.
Regionally, we are seeing declines across all four regions — the Northeast, South, Midwest, and West Coast, although Biobot’s data kind of interestingly shows a potential increase in the Northeast. I’m not really seeing that in any other data sources yet, but we’ll see in future weeks if that’s borne out anywhere else.
Miles: You can find out more about the way we develop our COVID forecast and trends on our website.
Betsy: It’s always important to note that wastewater is not a perfect way of measuring COVID spread. It’s a population-level proxy, so that doesn’t necessarily mean cases are the same. It is more of a, “Broadly speaking, that’s what the picture is.”
Also, another thing to be concerned about as we head into the fall is we have, of course, a new [SARS-Cov-2] variant on the scene. It’s called XEC. It’s a recombinant variant, which means it was generated when somebody was infected with two different variants at the same time and they combined.
This is something that’s just happened a few times over the course of the pandemic, and it often leads to kind of trickier variants that bring some attributes of, like, different past strains together.
So that’s something that could likely contribute to a surge later in the fall and winter, but it’s only in the U.S. in pretty small numbers right now.
James: Another heads up is that you can [now] request your four free rapid COVID tests per address [if you’re in the U.S.]. The expiration dates have been extended, I think people are already starting to get their orders.
You can place an order, which ships free, at covidtests.gov.
Betsy: Just four COVID tests, which is really so totally insufficient, but I guess better than nothing. [laughs dryly]
Miles: [laughs]
Betsy: It really is we “have the” tools.
James: [laughs wryly] And on that dire note, after a quick musical break, we’re about to break down what happened at the NIH RECOVER-Treating Long COVID kickoff meeting last week.
[Instrumental segment of theme song plays]
Top stories (4:55)
The Sick Times: Live blog: Following the RECOVER-Treating Long COVID kickoff event & “A good step”: Long COVID advocates and researchers respond to the RECOVER-Treating Long COVID meeting
James: In February 2021, the National Institute of Health launched its program for long COVID research, which is called conversationally RECOVER, or Researching COVID to Enhance Recovery. Over 1 billion dollars were invested into this program.
And last week, researchers, medical professionals, people with long COVID and patient-advocates met for a three-day summit kicking off an addition to RECOVER, called Treating Long COVID. The full acronym for this initiative is RECOVER-TLC.
So there’s another $515 million that was added to support a new round of clinical trials that is looking at treatments for long COVID.
But before getting into the meeting, I wanted to kind of go back and set the stage a little bit because NIH RECOVER has had its fair share of criticism, which The Sick Times has covered extensively.
Betsy, you[‘ve] sat down with NIH director Monica Bertagnolli and did a deep dive into documents that show NIH RECOVER failing to meet its initial targets.
What context from your past reporting do you think is really helpful to kind of set the stage for this meeting and, you know, RECOVER-TLC’s goals?
Betsy: You know, I started reporting on it back in fall of 2021, when there started to be concerns and critiques kind of emerging from the patient advocacy community. I’ve done stories for a couple different outlets — most recently, of course, The Sick Times.
Looking at what some of these critiques are, a lot of the big ones are that it’s been very slow-moving, very bureaucratic. People don’t really know who is in charge or where decisions are coming from. RECOVER, as a program, was sitting, like, in between a couple of the NIH institutes, and it didn’t have super clear leadership or accountability. There were all these committees that were doing different things, and the level of coordination between them was kind of unclear.
A lot of these committees did have people with lived experience of Long COVID, but a lot of those folks were saying that they didn’t feel that their feedback was really being listened to or incorporated into the program — throughout everything from how it was set up and additional questions included in the observational studies, to how they picked what to test for their first round of clinical trials.
The clinical trials in particular, people were very critical that they weren’t testing promising treatments. They were testing melatonin and a brain retraining computer game. Of course, one was looking at exercise, which is very controversial and a lot of criticism, given all the history of exercise making people [with ME/CFS] worse.
Just … a lot to say there. A lot of these issues stem back just organizationally to the NIH not funding infection-associated chronic diseases in the past, not funding research into ME, not funding research into dysautonomia, not funding research into, also, things like chronic Lyme.
All of this kind of created a problem of expertise, where the researchers who really know these diseases well were not those who had experience managing large NIH grants.
The people who were put in charge of RECOVER didn’t really have any of that experience and have been reinventing the wheel a lot through the first couple of years of this program.
Monica Bertagnolli [the director of the NIH], I’ve had the opportunity to talk to her a couple of times in my reporting. Most recently, we published a Q&A with her in August.
She does seem to be acknowledging and hearing a lot of this criticism and moving forward is really emphasizing the need for more clinical trials, faster clinical trials, trials that take into account what people in the Long COVID community really want to see and treatments that are going to be really promising.
One of the main goals for the meeting was to get that feedback from people with long COVID, from some of these researchers who have been studying these diseases for a long time and push forward and take those next steps towards new and hopefully more exciting, more promising clinical trials.
James: The sessions that I was live blogging included researchers who were talking about clinical trials that they did looking at ME/CFS, looking at dysautonomia, looking at POTS. They do seem to be making an effort. There were also panels that were seeking to uplift the experiences of people living with Long COVID.
Even outside those panels, people living with Long COVID made their frustrations and their experiences well known.
Heather, Miles, and Betsy, I think all of you had live blogged more of the sessions that had more of that feedback from people living with Long COVID and advocates.
What were they saying and what are their hopes and asks?
Heather: I guess for me, just live blogging this wore me out! I really already had so much respect and admiration for the patient-advocates and people with Long COVID who were there, but it really put it even more into perspective, the people who had to travel to get there and to sit through all the sessions and all those things.
And the demands, the asks were so reasonable. And I think the main thing that I heard over and over again was just asking to be heard, to be listened to, and [it] specifically came up in a panel for interventions, which I think had been something people were really excited about.
They were hoping to hear something new about interventions, and they were also hoping to just share their own experience with the interventions that they’ve been tested with. And at the end of the panel, there were like 15 minutes left.
And Meighan Stone from the Long COVID Campaign, she just called it out. She said, “We keep saying that we want you to hear us, and you keep saying you’re going to listen, and here in this place where we’re supposed to have space for you to hear us — you’re not hearing us. There’s only 15 minutes left.”
We heard that echoed over and over again to just please listen.
There was also a call repeatedly for just a sense of urgency, and you could just sort of feel the pleading coming from people with Long COVID saying to these researchers and doctors, like, “This is science to you, but these are our lives. Our lives are being destroyed, and we want you to move on this stuff. We want actual interventions.”
The other hope that I heard a lot was just [for] accessibility in the designs of studies, understanding the toll it takes on so many people with Long COVID to even go to these trials in the first place. They’re not safe when there are a lot of times if there’s no masking, if they’re being asked to exercise, to push themselves into PEM [post-exertional malaise] or whatever.
There was a real sense of desperation around, “Can you design these studies in a way that don’t make us worse?”
Betsy: Heather gave a great summary of a lot of the feedback from people with Long COVID who were there.
Another thing that came up, both from the patient advocates and from scientists, was a need for more kind of connectivity between Long COVID research and those other infection-associated chronic diseases that often overlap with long COVID.
ME/CFS, for example, depending on how you define it and which criteria you use, a lot of people — up to 50%, in some studies of people with long COVID — meet the criteria for ME/CFS.
There’s a lot of interest in both learning from the prior ME/CFS research and also including those scientists and those patient communities in RECOVER.
Miles: Yeah, another point that I noticed when I was covering was how little post-exertional malaise was covered throughout the meeting.
That was a critique from a lot of people with ME and ME researchers. By not looking at this symptom that’s in maybe half of people with Long COVID, will RECOVER actually get to the bottom of treatments for post-exertional malaise? For Long COVID? For ME?
It was just sort of disappointing that a lot of the sessions didn’t really talk about this.
The other huge comments I was finding was how little long COVID was talked about in children.
There was one panel on it, but it was criticized by — Megan Carmilani at Long COVID Families talked about how over the two and a half day meeting, there was only a very, very short amount of time spent on children.
The researchers who were doing this panel talked a lot about how we know there’s millions of kids — between, like, 4 and 6 million American children who have Long COVID, but there is a big hesitation in diagnosing them and getting the right information to clinicians about what Long COVID is, and how it presents in children and adolescents in different age groups.
They sort of brought up great points about how, a lot of the time, there’s a hesitation to put kids into clinical trials, but there are a lot of off-label treatments and clinical trials for other diseases outside of long COVID, especially in cardiac diseases. So why is there this hesitation in long COVID as well?
James: Access was also a big conversation about the NIH RECOVER meeting itself.
Heather, you mentioned that live-blogging wore you out and, also, that was something that a lot of people mentioned. It’s a really long time to be engaged for some really dense conversations and so people with Long COVID were saying, you know, in the comments of the meeting and on social media that this was just one of the ways the meeting wasn’t really accessible.
On that front, you know, with accessibility, what improvements do people with long COVID want to see in future meetings?
Betsy: A lot of people were disappointed at the lack of masks at the meeting.
I think just watching the events on live stream, it was pretty clear that many, if not most, of the people with Long COVID who were in the room were wearing high-quality masks like N95s, KN95s, while many of the researchers and government officials were not.
And, you know, I’ve seen a couple of people point out that in a federal building, you can’t require masks anymore. However, you know, there still could have been more modeling done by researchers or more kind of acknowledgement of the potential severity of long COVID, of reinfection.
James: Right. And just, like, the constant routine of people would get up to speak and give their presentation and they would be wearing a mask before that and then take it off to speak as if, you know, COVID stops floating around in the air in your little bubble.
Betsy: Just for your five minute talks. [laughs wryly] [That’s] not how it works.
Heather: I’m someone who, whose EBV [Epstein-Barr virus] was reactivated when I first got Long COVID. And I contracted EBV from a microphone from someone at, like, a public panel.
So every time I saw somebody take down their mask and speak into this microphone and then hand the microphone to somebody who was a person with Long COVID, I just felt so frustrated.
There was just this sense of like, you are the people who are supposed to be — you are following the science that’s supposed to help us and change our lives and make things better, but you’re not even wearing a mask, you know.
And I think it was really hard to just see. It must have been a lot harder to experience and to be in the same room.
Miles: One comment that stuck out to me was JD Davids, from Long COVID Justice, saying that the lack of masking was a microaggression to people with Long COVID.
As someone with Long COVID and just as a journalist covering this, it just seems very disrespectful.
And, literally, people are bringing up that they can’t access the [RECOVER] study because of masking issues. People who are in charge of this, like Dr. Jeanne Marrazzo, are unmasked giving speeches in the area as advocates are right there in the room, as if they couldn’t get reinfected.
It shows that they’re really not listening because this is one of the things that advocates talk about all the time. And it’s one easy thing you can do even if you can’t mandate it.
You can show respect by masking and not potentially infecting someone during these high levels of COVID.
James: This has been a repeated refrain. And in one of the sessions I live-blogged, you know, Dr. Ziyad Al-Aly had asked people on Twitter what they had wanted him to say at this meeting.
And, you know, that was again one of the biggest things that people were saying is, you know, make clinical trials accessible by requiring masks, by having the people who are administering the trials or leading the trials masking.
Travel is another huge opportunity for reinfection. Also just, you know, post-exertional malaise. And so that is one of the obstacles to clinical trials that was discussed during the kickoff meeting.
What are some of the other obstacles to trials along with the concerns around accessible design?
Heather: One of the things that I learned during this three-day meeting is how many pathobiological samples the NIH has.
All the researchers were so excited and they were explaining, “And we have these stool samples, and we have these blood and this saliva. We have pre-infected people and we have post-infection, and then if you get reinfected, you can —”
But then, as the meeting went on, it just continued to become clear that there was no money to study these pathobiological samples.
So they’re all sitting there and everybody’s really happy and excited, very proud of them, but they can’t do anything with them. That was definitely, [chuckles wryly] you know, an obstacle that came up.
And the other thing was the researchers were saying there was a lack of investment from pharmaceutical companies, people that they wanted to partner with them to test trial-different drugs and things like that.
They don’t feel like there’s profit in it for them, so they’re not willing to partner with the researchers, which is pretty discouraging.
And, you know, the thing I kept hearing over and over was like, “This isn’t a mystery. We have the tools. We have the samples.” But, you know, what are you going to do with them?
Betsy: I think kind of related to that, there is a real need for more specific outcomes measures. Outcomes measure, being like, what is the result of the clinical trial? If you’re testing a treatment, you want to be able to measure something to tell you if it’s working.
And I think partially because of the complexity of Long COVID, because of the way it can be so different for different people, we have yet to have a really clear sense of like, how do we actually identify if we have a great treatment? How do we know that it’s working for people?
I think post-exertional malaise is one that people talked about as a potential outcome, but there needs to be more scientific consensus.
Miles: As Lisa McCorkell [from the Patient-Led Research Collaborative] said at the final sort of roundup, in her talk on the third day, she said, “We can’t ignore PEM. Neither can you.”
That stuck out to me as a really important sort of, just, quote about, you know, patients — a lot. Especially [because] once you experience post-exertional malaise, [you] can’t ignore it. No matter what we do, it catches up with us at some point if we’re not careful.
And so researchers really need to pay attention to it and find ways to measure it.
The NIH has sort of failed at this in the past. Their intramural study has been heavily critiqued by researchers of post-exertional malaise and ME.
Hopefully this is a place where they can sort of turn around and finally further understand PEM and use it as an objective measure in their studies.
Betsy: Yeah. So I think that’s been a big criticism of the first group of clinical trials.
And it’s important to note also that while we’ve known about the first, you know, group of clinical trials for a little while now. Some of them are still recruiting. So if anybody listening to this is interested, you can go to the RECOVER website and learn more about these.
The three that are currently recruiting are an autonomic trial, which is studying heart rate, dizziness, fatigue, other, like, dysautonomia type symptoms. One focused on sleep that’s looking at poor sleep quality, having a hard time falling asleep or staying asleep.
And an “exercise” trial, which is looking at exercise intolerance and post-exertional malaise. Notably, there are separate arms and people who have post-exertional malaise are not supposed to be included in the exercise trial.
There’s been a lot of criticism of the protocols of that study, which we won’t get into right now, but you can learn about all of this on the RECOVER site and also with our past coverage.
One other thing that I wanted to mention from this meeting that seemed significant was I mentioned one of RECOVER’s challenges has been, like, a lot of bureaucracy and poor organization. And with the Treating Long COVID initiative, the recovery program is now kind of moving into the National Institute for Allergy and Infectious Diseases, or NIAID.
I think a lot of advocates are excited about that because they see it as maybe helping to streamline some of the procedures around recovery, giving more oversight.
So like specifically, Jeanne Marrazzo, who is the head of NIAID, you know, is going to be more specifically accountable for the next round of clinical trials.
Miles: RECOVER did end up sort of committing at the end to highlight and put funding towards clinical trials for kids. So it will be great to see them follow up on that.
James: We will, of course, continue to report on it and see how things continue to unfold.
The full liveblog of the RECOVER-TLC kickoff and a recap of some reflections from researchers and people living with Long COVID about the meeting — those are both linked on our website.
And video recordings of the RECOVER-TLC meeting are soon to be posted on the Foundation for the National Institutes of Health website. They’ve also released a form for people to submit potential therapeutics to be considered for upcoming clinical trials.
Thank you so much for joining us, Heather.
Heather: Yeah, it was so good to be here with you.
Next, we’ll get to research.
Research (22:15)
Harvard Gazette: Drug-free nasal spray blocks, neutralizes viruses, bacteria
[Miles’ voice echoes the word “Research” accompanied with a horn sound excerpted from the theme song]
Miles: We have a potential spot of hope.
There is a nasal spray study out of the Harvard-affiliated Brigham and Women’s Hospital, [showing] nearly 100% protection from respiratory viruses, including COVID, in preclinical studies.
So this was done on a rodent model. It’s basically like a gel spray that goes into your nose and it can protect you from COVID, from flu, and other viruses.
So this is, we’re seeing a lot of promising research in nasal vaccines and sprays, and this sort of continues that trend.
This still needs to be done in a clinical trial for humans, so, you know, it’s not for certain, but if this works, this would be a huge, huge game-changer in the pandemic and especially for people with Long COVID as they try to avoid those reinfections.
Outro (23:00)
James: That’s all we have for you this week. 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. Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.
Thanks for listening.
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