In this final newsletter, I wanted to highlight one of my favorite sources for new research on COVID-19 and Long COVID (and one that published a new paper recently): the Patient-Led Research Collaborative (PLRC). PLRC is an independent research group including people with Long COVID and related chronic diseases, such as ME/CFS and POTS, who also have scientific research experience.
This organization has been a leader in Long COVID research since May 2020, when it published a study describing persistent symptoms among people who got COVID-19 earlier that spring. The group’s further papers have included comprehensive analyses of Long COVID symptoms and reviews of other research. In addition to running studies, the organization funds biomedical research, publishes patient-generated hypotheses for scientists, and advocates for better patient engagement in Long COVID research.
PLRC has regularly pushed the Long COVID field forward, with papers addressing under-studied topics like reproductive health and mental health. Their latest paper similarly provides data about working with Long COVID, an issue that is under-studied yet frequently discussed in the Long COVID community. The paper summarizes results from a survey of about 500 people with Long COVID describing the condition’s impact on their work.
From the survey results, the researchers found four primary themes: 1) people with Long COVID want to return to work, motivated by financial pressures and a sense of purpose for their jobs; 2) diverse, complex, and sometimes inconsistent Long COVID symptoms can interfere with work and other day-to-day tasks; 3) people face disbelief and stigma due to Long COVID; and 4) support from medical providers is important for returning to work. These findings align with stories I’ve heard from people with Long COVID whom I’ve interviewed for stories, as well as conversations I’ve read online.
We're happy to release a new patient-led paper on returning to work & episodic disability in #LongCovid!
— Patient-Led Research Collaborative (@patientled) November 9, 2023
If you’re looking to keep up with impactful Long COVID research, PLRC—along with the organization’s collaborators and projects it has funded—is an important group to follow.
As research on Long COVID progresses, many scientists and clinicians working on this disease are learning from other chronic conditions that share symptoms with—and are often co-diagnosed with—Long COVID. One of the most common is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition characterized by extreme fatigue that often gets worse after physical or mental exertion.
Despite impacting millions of people prior to the pandemic, ME/CFS is not well studied; research into the condition is underfunded, and doctors typically don’t learn about it during their training. A new paper from the Rochester Mayo Clinic and ME Action, a ME/CFS advocacy group, may help change this, by offering guidelines for doctors who have patients with this condition.
The paper describes common ME/CFS symptoms, provides guidance on diagnosing the condition, explains how ME/CFS may intersect with other chronic conditions, and shares symptom management techniques, such as pacing to avoid post-exertional malaise and monitoring symptoms over time. Mayo Clinic clinicians can read the paper for continuing medical education credit.
In the week since it was published, the paper has seen wildly high engagement metrics as people with ME/CFS and Long COVID have shared it, study author Jaime Seltzer (from ME Action) wrote on Twitter. Seltzer encouraged people in these communities to share the paper with their clinicians, as a resource for doctors who weren’t previously familiar with ME/CFS.
CDC updates ventilation guidance: On Friday, the CDC made its first-ever official air quality recommendation for all indoor spaces, in an update to its overall ventilation guidance. The agency now says all buildings should strive for five air changes per hour (ACH) at a minimum; in other words, clean air should circulate through the space every 12 minutes or more. This update is a victory for many clean air advocates who’ve pushed for better guidelines during the pandemic as a way to reduce the risk of COVID-19 and other respiratory pathogens. As expert and advocate Devabhaktuni Srikrishna said to me on Twitter: “This is exactly the clarity we were pushing CDC for for since last year… Now the question becomes, how does everyone do it in their home, school, and office? How much does it cost? Where do you get it?”
Millions Missing in Washington, D.C.: On Friday, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID patient advocates held a demonstration at the National Mall in Washington, D.C. to show U.S. leaders how chronic disease has pulled millions of Americans out of public life. The demonstration, organized by ME Action and Body Politic, included an installation of 300 cots with hand-made pillowcases created by patients across the country. Each cot is intended to represent people who can no longer work or do other day-to-day activities that were routine before they got sick with Long COVID or a similar chronic illness. You can learn more by watching ME Action’s press conference from the demonstration.
Post-PHE prices for COVID-19 testing: Researchers at the Kaiser Family Foundation put together a new report describing how much Americans will likely pay for PCR and at-home tests now that the federal government no longer supports blanket insurance coverage. At-home test prices range from $6 to $25 per test, depending on the brand and number of tests purchased at once, the KFF analysis found based on a variety of data sources. PCR tests and others performed in healthcare settings range from $25 to $150 per test, with medians around $50. Tests including COVID-19 and other pathogens are the priciest.
Sleep apnea and Long COVID risk: A new paper, published this week in the journal SLEEP, finds that people with sleep apnea have a higher risk of developing Long COVID compared to those who don’t have this condition. Researchers at New York University (and other institutions) compared Long COVID symptoms among adults and children with and without sleep apnea through multiple electronic health record databases, finding people with sleep apnea had up to a 75% higher risk of long-term COVID-19 symptoms. This study was supported by the National Institutes of Health’s RECOVER initiative. Like other papers to come out of RECOVER (including another recent study looking at comorbidities), it’s utilized health records rather than the actual cohort of patients recruited into the NIH’s research program.
Diagnosing COVID-19 through breath: Another notable recent paper, published in the Journal of Breath Research in April: researchers at the University of Colorado Boulder and the National Institute of Standards and Technology have found they can identify whether a patient has COVID-19 by testing their breath. The technique involves using sensitive lasers and artificial intelligence to differentiate between chemicals in a patient’s breath; it’s similar to a breathalyzer for alcohol testing, though more complicated. In addition to COVID-19, breath testing might help identify other diseases.
I have a new story out in National Geographic this week about a growing area of research connecting the gut microbiome—the diverse community of microorganisms that live in our digestive systems—with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the chronic disease that often occurs after viral infection and has many commonalities with Long COVID. (Here’s a non-paywalled link to the story.)
Two recent papers, both funded by the National Institutes of Health, point to specific differences between the gut ecosystems of ME/CFS patients and those of healthy controls. The new studies built on previous research in this area, but utilized larger patient cohorts than typical ME/CFS studies. Their findings provide avenues for better diagnosing and treating ME/CFS patients, as well as people with Long COVID who meet the criteria for ME/CFS. (Some studies suggest about half of Long COVID patients fall into this category.)
Continued gut microbiome research could identify specific bacterial supplements that help alleviate ME/CFS symptoms, along with new drugs that target specific changes in these patients’ metabolisms and immune systems. But many people with ME/CFS and Long COVID aren’t waiting for the clinical trials; they’re experimenting with the supplement and diet changes that are already available.
One big project in this realm is Remission Biome, a study by two ME/CFS patients who were working scientists before their symptoms became disabling. Patient-researchers Tamara Romanuk and Tess Falor both have experienced “remission events,” in which their ME/CFS symptoms faded after taking bacterial supplements. When they met on Twitter, they started a project attempting to recreate those events—but it quickly grew into a much larger effort to understand how the microbiome interests with post-viral illness symptoms.
I talked to Romanuk and Falor for my National Geographic story. We discussed how to design a study in which the scientists are also the patients, how their project builds on big data in microbiome research, communicating with the patient community, future plans for Remission Biome, and more. Since most of the conversation didn’t make it into my story, I wanted to share it here.
This interview has been lightly edited and condensed for clarity.
Betsy Ladyzhets: I wanted to start by asking how you all came to do this project, specifically replicating remission events that you’d experienced in the past, and how that intersects with other research that’s been done in this area of ME/CFS and the microbiome.
Tamara Romanuk: I had always been planning on trying to replicate the event… It had been in my mind constantly to try to recreate the experience. I actually did, at one point, take another course of amoxicillin [an antibiotic] but I didn’t do anything else. I didn’t do the probiotics. I didn’t do the sort of the full suite that I was that we’re proposing here [in the Remission Biome protocol].
So, it’s something I would have come to on my own regardless. But when I met Tess and she told me that she had had a similar event, it seemed like, okay, this was something we were probably going to do in the future together. It was just a matter of when. I think we must have talked about it even within the first weeks of meeting each other.
Tess Falor: It was, 10 days [after we met]… I had an interesting experience, in that that I didn’t realize that it was the antibiotics that might have done this [alleviated symptoms]. So back when I had my event in 2009, I went gluten-free and started the antibiotics at the same time. And two days later, after I had my major remission, I accidentally ate gluten. And then I felt worse the next day. So for 13 years, I’ve been assuming that it was going gluten-free that made the difference. And I never consider that I could recreate it because I’ve been gluten for that whole time.
It wasn’t until I met Tamara last fall that I realized that, wow, this [remission event] actually could have been the antibiotics. So when that came up, then, Tamara had this idea to try to recreate it. If it was actually the antibiotics that did it, could we create this really extreme remission event?
BL: I see. In terms of identifying the antibiotics, the probiotics, and the other treatments that you’re using in this study, how did you arrive at this protocol that y’all are following?
TR: Yeah, great question. When we decided to recreate it, the plan started as, “let’s take the antibiotics, and let’s throw in some probiotics, and let’s see what happens.” But we’re scientists, so it morphed very, very quickly into something much, much bigger.
Where Tess and I went in our minds was directly to the theory and the models that would have given rise to a phenomenon like this. Instead of starting at a protocol, we went, “this is our pet theory [about why remission occurred], and if our pet theory is right, how do we work backwards and recreate the protocol?” One of the really interesting things about doing it from that angle was that most of the stuff that I had initially thought I would include I actually threw out very, very quickly. The probiotic that I thought we were almost for sure going to use has ended up being, “oh, that actually might have stopped my event from continuing rather than promoting it.”
And we’re working in an age where there’s some really new cutting-edge databases and information sources out there. I wouldn’t have actually been able to do this type of protocol development a few years ago, even. [For example], we knew that we wanted to manipulate tryptophan metabolites in the gut. And so we needed to find strains of bacteria that were involved in tryptophan metabolism. And then we also knew that we wanted really specific metabolites to be produced in the gut and get to the brain. We were able to go into a database and actually follow that chain, identify specific strains of bacteria that would do exactly what we wanted in terms of gut and brain metabolites, and then trace it back to probiotic manufacturers. That’s pretty phenomenal. And that wouldn’t have been possible two years ago.
BL: Yeah, that’s incredible that you could just follow it all the way through like that.
TF: Absolutely. I’ll also mention that we’ve gotten advice from experts, too. Three people who study the microbiome gave us specific advice, and it all kind of converged in the same ideas, the same strains. So that was cool, too.
BL: Actually, it’s interesting that you mentioned tryptophan, because that was one of the processes identified in the recent papers [the two studies that were the focus of my National Geographic story] as well. I think the main one they looked at was butyrate.
TF: Yeah, those are both things that we are thinking about as part of our hypotheses. When those papers came out, we were like, “wow, this is really cool timing.” We read the papers, and found [their findings] line up with what we’re thinking. And we’ve already been thinking about this for months.
TR: There’s a really neat tie-in here in terms of the tryptophan metabolism. Because initially, my theory had been surrounding Robert Phair’s idea of the “Metabolic Trap,” which is, of course dependent on tryptophan. But the [remission] event itself was also incredibly unique because it was a bit psychedelic. Colors were brighter, smells were smellier, the world was amazing, we felt overwhelming gratitude. I tell people that it was a little bit like a mix between doing MDMA and psilocybin mushrooms. But without the hallucination. It was just this overwhelming change in my mood.
So I was thinking about tryptophan, serotonin, the same receptors that might actually get activated during a psychedelic trip. It really seemed that this entire pathway—from tryptophan to serotonin, to some good and some bad molecules like kynurenine, which can be both pro- and anti-inflammatory, and then quinolinic acid, which is absolutely pro-inflammatory in the brain. When you start at tryptophan, you keep going along this pathway, and whatever path it ends up following, you get different neurotransmitter activity going on. [The remission] was a microbiome event, but it’s really a microbiome-mediated event that’s occurring in the brain.
BL: That makes sense, yeah. Because it’s the microbiome that impacts these metabolic processes that then impact what’s happening in the brain, right?
TR: Absolutely.
BL: In terms of tracking what happens when you do this protocol, what are you using to study the changes in your gut and the further progression that you were talking about?
TF: Tamara knows more details than I do, but I’ll just say we are measuring a ton of biomarkers. Everything from specific composition of the gut, to measures of the immune system, like cytokines, and measures of what’s going on in the brain.
TR: We probably have about a thousand metabolites that we’re gonna track. When you consider that we’re doing a lot of these pre[-trial], hopefully during as well as post, it really adds up. It’s actually one of the most exciting parts about the project, for Tess and I. We both have an explicitly systems thinking approach to science, and we love big data. This is something that actually really excites us, we’re going to be able to really dig in.
All of these tests really work in concert as well. The immunogenetics angles are really key for us. And Tess and I have some unique, similar genetic backgrounds, so that’s going to tie in. Then tracking neurotransmitters: actually tracking tryptophan, tracking serotonin, tracking kynurenic acid and quinolinic acid, as well as their ratios. And all of these metabolites.
BL: I see. Yeah, I feel like that will be really interesting to look at all the interactions between these different things. I know you mentioned that you’ve consulted with folks on the protocols, are there other things that you’re doing to maintain the safety of the experiment?
TR: Absolutely. So we’re working with one of my personal GPs [general practitioners], and she’s kind of acting as our GP safety liaison. She will be on hand if anything strange happens. But really what we’re doing in terms of safety is we’re testing ahead of time. We’re making sure we don’t have leaky gut, we’re making sure we don’t have a compromised blood-brain barrier, or making sure that we don’t have certain pathogenic bacteria in our system that could explode if they weren’t affected by the amoxicillin—and lead to a massive, very adverse reaction.
The main tests we’re doing there is from a company called Cyrex, they do these amazing immune tests… And then we’re doing tests like the GI effects from Genova, which will actually tell us if we have high levels of any pathogenic or potentially-pathogenic bacteria in our guts, before we actually start. If any of [certain concerning biomarkers] turn up as being really high for one of us, then we will take some time out, try to correct that specific defect and then proceed again.
BL: That makes sense.
TF: We do have a clinician who has a lot of experience with these specific tests, and specifically with the gut, who’s helping us. In addition to Tamara realizing it was a good idea to do all this pre-testing, she recommended it, too. So she can take a look at our results, and give us her perspective.
TR: One of the things we want to do there is, we want to actually figure out a very simplified testing protocol, which we can suggest to people to do for themselves before they do this [experimenting with supplements]. Because we want to actually bring this work to people who really need it, but we also want to make sure they’re safe. Hopefully, all of the testing that we do will help us arrive at a couple of biomarkers, which we can then tell people, “Look, if you test these one or two or three things, then you can do this without worrying so much about having side effects or adverse consequences.”
Right now, it would cost the regular person probably about $2,000 to test everything that we’re testing, in terms of making sure all these levels are safe. We want to figure out a way to decrease that cost, break that down into specific biomarkers. And then, hopefully, when we move into our Phase Two of Remission Biome—which is actually bringing this work to the patient population—we might even be able to give people these tests, or at least provide them with very significant discounts for these tests.
BL: Yeah, that’s something I wanted to ask you more about, too, is how you have been communicating with other people who want to try this sort of thing. I know from following y’all on Twitter and seeing some of the discussion around this project that folks are so interested. And generally, of course, there’s a big interest among people with Long COVID, ME, other similar conditions just trying to see what would work while there are no official FDA-approved treatments.
How have you found that experience? And, as you look towards Phase Two, what are some of the things you’re going to be thinking about, in bringing these results to other people?
TF: I’ve been talking to people on Twitter. And I would say, we’ve mostly been recommending, “wait until we do this first experiment, so that we can learn from it.” But for people who happen to be getting prescribed antibiotics [for an infection or something similar], then they have their doctor watching them. In that case, we can say, “you want to protect your gut, here are the probiotics that we’re doing, and you might possibly want to do a biome site test while working with your doctor.”
TR: We have had such an overwhelming response. I think hundreds of people must have contacted you [Tess] personally now with a story that they thought might be a revision event, like the one that we’re describing. And hundreds more have said that they’ve had some sort of a positive or negative reaction to antibiotics. And they’ve had ME/CFS, or Long COVID. Those stories are really the jumping-off point for us. We want to put together a very formal survey to actually figure out how people are responding to antibiotics in post-viral illness, in general. There are a lot of clues in people’s stories.
And the response of our community has been almost overwhelmingly positive, but there have been a few people who’ve had pretty severe baseline decreases after taking antibiotics. It’s always hard to know if the antibiotic itself was responsible for that decline or something else. But we really want to delve into that and figure out whether there’s a subset of people that seem to be having negative reactions.
BL: I also wanted to ask about communicating the results from this work. What are you thinking about in terms of both sharing with other people in the community, and also, are you looking towards like a preprint, or scientific publication?
TF: Yeah, we’ll be communicating in real-time with the community on Twitter, and getting input from all the scientists that we’ve talked to. That’s also something that we didn’t really mention yet is, we’ve talked to over 20 different researchers and gotten input from them. We have some that are interested in analyzing our results afterward. So, there’s community communication, but we are also planning to publish it, at least as a preprint.
TR: We’re going to be a great case study. And it’s going to be a great paper. It’s not going to end up in a formal journal, but we’ll definitely pop it into one of the preprint servers.
In addition to the case study, though, we really want to do a meta-analysis. A formal meta-analysis of all the studies that have ever looked at antibiotic use and post-viral illness. We think there are a lot of clues there. One of the things that’s really fascinating to us about this is that there are a number of similar situations that have happened in other conditions. One of the really key ones is PANS, or PANDAS, which often occurs in children when they get a staph infection—and then they get this crazy neurological event where their behavior changes and they develop OCD. Well, turns out, in an enormous number of those cases, if you give them antibiotics of the right type quickly enough—and a lot of the time, it’s amoxicillin plus minocycline, or doxycycline—you can actually completely put that child into remission.
And there’s other disease groupings that seem to have these remission events, in very similar ways. Even Alzheimer’s, many people who have a grandparent with Alzheimer’s will tell stories of moments of complete lucidity. This indicates that maybe brain damage isn’t the ultimate issue, maybe there’s something going on with the communication networks. And that’s really what we’re targeting here [in our research].
BL: That’s really interesting. I was actually just talking to another researcher for this story [Sonia Villapol at Houston Methodist Hospital], who mentioned that her lab, where she is studying Long COVID and the microbiome, has also done work on Alzheimer’s, and even traumatic brain injuries, where there’s some kind of microbiome interaction. I thought that was really interesting. It definitely seems like there’s so much more to be explored here.
TF: Yeah, one of the researchers that we talked to is also doing ME/CFS and Long COVID research, and then Parkinson’s—using probiotics for Parkinson’s. I think a lot of what we’re doing can apply to other conditions, too.
BL: Right. I also wanted to ask if y’all had any other comments about the two recent studies?
TR: Well, I was pretty excited to see butyrate as sort of the highlight molecule. Very early on, we decided that we were going to try to increase our butyrate levels… So we were really excited to see that both of those papers linked to butyrate-producing bacteria, which was really key for us. It’s not just that we want to increase butyrate during the experiment itself, but it’s also a great way to actually help heal leaky gut issues. So it’s a really great intervention.
BL: Yeah, that’s something that has come up a lot in the research I’ve done for this piece—the value of intervening early and trying to help people out before they’re going to have long-term symptoms, or at least in the earlier stages of illness. Which I know is one of the reasons why there’s so much interest in Long COVID, because you’re ideally diagnosing people earlier than what’s historically been the case for ME and some of these other related conditions.
TR: To me, the really exciting application of this is that antibiotics are a very safe intervention that have been used for dozens of years. If it turns out that there’s a chance that taking a quick course of amoxicillin and a tetracycline like minocycline or doxycycline, can take someone who might have developed much more severe Long COVID and then MECFS out of that track, well, that’s phenomenal. If there was actually something that you could go to your doctor and say, “hey, I’m having these Long COVID symptoms, what can we do right now?” And the answer is, “well, it’s pretty safe, why not just give you a week’s worth of antibiotics?” It’s a pretty exciting possibility that we could stop some of these more severe cases.
BL: Yeah, absolutely. I also wanted to ask, in terms of the institutional side of this, what do you think the NIH and other government agencies could be doing to better support this kind of work, and integrating ME/CFS and Long COVID research, as we try to understand the common mechanisms here?
TR: Well, they could actually be treating us. This is really the biggest roadblock: there are hundreds of thousands of people out there who are undiagnosed and untreated, and are trying to biohack their way out of serious post-viral illness. None of these people are seeing clinicians that know what they’re talking about. So, we need treatment centers—but not just the Long COVID treatment centers, where they just tell people to rest, but centers that actually do biochemical testing, figure out what’s actually going on in their bodies, and then doing targeted treatment.
Even if you can’t cure ME/CFS right now, it doesn’t mean that you can’t help people feel phenomenally better, and make sure that they don’t slide from moderate into severe. What you said before is so key, because most of us slide from moderate to severe when we get comorbidities. When we get MCAS on top of the Long COVID, for example. All of these comorbidities compound, and then they get people to a state where almost any intervention is aggravating to their systems, and they literally can’t tolerate light or sound or food. Treating someone at that stage is almost impossible, unfortunately, at this point. So early intervention is really key—but to get early intervention, you need clinicians that know what they’re doing interacting with patients.
BL: Which we don’t have nearly enough of.
TF: Yeah, that’s a major problem. Another angle that I’ll mention is more funding for research, specifically for ME/CFS. There are a lot of really great ME/CFS scientists who haven’t been able to get funding, but they’ve been trying to study this for decades. I keep hearing people saying that there’s these new researchers coming into Long COVID, who don’t really understand a lot about the history and what’s already been done. I think we need more funding for ME/CFS research, plus particularly funding for people who have been doing this for a long time.
TR: Absolutely. One of the things that Tess and I are really excited about is—I guess what we’re going to be calling Phase Three, but it’s starting now—is we’re putting together a hybrid DAO, plus a nonprofit, to actually provide funding for researchers in this area. It’s not just for researchers, it’s specifically for PhD patients.
We really want to tap into this community of sick scientists who’ve been sidelined by ME/CFS, by COVID, by other disabilities, and offer them the chance to actually get back into research in a way that they could do and would be supported. We’re really seeing a new model, a new way of being able to conduct research that is outside of academia, yet has checks and balances and support. Remission Biome has been, hands down, the best thing for my mental health that has happened in 10 years. If I could bring little bit of that to other people in my position—that’s what I would like.
TF: We’ve actually had a lot of people volunteer to help. And I’ve gotten the comment many times, people saying, “this feels so good to use my expertise again.” These are people that have been on disability for 10 years and haven’t been able to do any work or any research. And now they’re able to give their expertise towards our project, and help us gain momentum and move forward, and they’re just really happy about it. I think there’s so much untapped expertise out there.
BL: Yeah, that makes so much sense. And I hope I can keep following this project as y’all expand it.
CDC committee recommends adding COVID-19 to childhood vaccine schedule: The CDC’s Advisory Committee on Immunization Practices (ACIP), which makes guidance on vaccination policies, issued a report this week recommending that COVID-19 vaccines be added to the standard childhood immunization regimen. Under the new guidelines, most children ages six months and older should receive two doses of a Moderna or Pfizer vaccine, followed by a bivalent/Omicron-specific booster shot. Immunocompromised children are eligible for additional doses.
KFF’s latest COVID-19 Vaccine Monitor focuses on winter surge: The Kaiser Family Foundation recently released the January 2023 update of its Vaccine Monitor project, which tracks U.S. sentiment around COVID-19 vaccines (and other pandemic topics) over time. In the latest round of surveys, KFF researchers found that about 38% of U.S. adults reported that “their households experienced either COVID-19, the flu, or RSV over the past month or so.” About 46% of adults reported that the news of these viruses made them more likely to take safety precautions. The report also includes data on bivalent booster shot uptake, behavior among immunocompromised people, and more.
New variants have yet to emerge from China, study suggests: A new paper from researchers at the Beijing Center for Disease Prevention and Control, published in The Lancet this week, found that COVID-19 cases in China during November and December 2022 were primarily driven by the Omicron subvariants BA.5.2 and BF.7. Both of these lineages entered China from other countries, rather than evolving during the country’s surge following the end of its “zero COVID” policies. The new paper is good news for global health experts who’ve been worried about new variants emerging from China, though outside reviewers have cautioned that it’s only one small snapshot of cases in the country, according to reporting by POLITICO EU.
Wastewater surveillance has a global health equity problem: Another study that caught my attention this week was a paper from the COVIDPoops19 team at the University of California Merced, summarizing findings from their global wastewater dashboard. The team reviewed wastewater surveillance projects at over 200 universities, 1,400 sites, and 55 countries, and found that monitoring primarily occurred in high-income countries. The researchers also examined open access to data, finding that high-income countries were better at sharing information with researchers and with the public. For wastewater-based epidemiology to reach its full potential, “show us the data,” the team writes in their paper’s abstract.
Microbiome research shows promise for understanding ME/CFS: In one more piece of research news: two recent studies suggest that the gut microbiome could play a role in causing myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating chronic disease that often occurs after viral infection. In research projects funded by the National Institutes of Health, scientists found specific changes to gut bacteria that were associated with ME/CFS patients. These changes could potentially be used as biomarkers to diagnose ME/CFS and as starting points for treatment. The new research also has potential implications for Long COVID, as many Long COVID patients meet the diagnostic criteria for ME/CFS.
Last week, in response to my call for donations to the COVID-19 Data Dispatch, I received some very generous support from readers. Thank you to everyone who donated—you are truly helping me keep this a free, accessible publication for anyone following COVID-19 news.
Following up on last week’s post, I wanted to share some suggestions for other COVID-related organizations that are taking donations this holiday season. If you have the resources and are looking for places to donate, please consider these nonprofits!
Body Politic, which runs one of the foremost Long COVID online support groups, is seeking donations to transition from a grassroots, all-volunteer organization to a format that’s more sustainable in the long-term. Their funding goal is $500,000.
The COVID-19 Longhauler Advocacy Project seeks donations to support its work advancing Long COVID research and supporting patients. Like Body Politic, this organization was founded by volunteers themselves dealing with Long COVID.
Marked by COVID is a nonprofit advocacy organization, also volunteer-run, seeking recognition of the Americans who lost their lives to COVID-19 and improved public health policies in the U.S.
Peste Magazine is a new online magazine focused on health journalism, advocacy, and the arts. The publication’s work so far has focused on COVID-19 but also includes other health justice topics; donations help to support payments for writers.
ME Action is a leading advocacy organization for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic condition that shares many symptoms with (and is often co-diagnosed with) Long COVID. Since the pandemic started, it’s also been involved with Long COVID advocacy.
Solve ME/CFS is another advocacy organization for ME/CFS and now Long COVID, focused particularly on funding and supporting research on these conditions.
Dysautonomia International is a leading advocacy group for dysautonomia, an umbrella term for conditions involving a malfunctioning autonomic nervous system. Similar to ME/CFS, dysautonomia is often a co-diagnosis for Long COVID.
Your local mutual aid group: Early in the pandemic, hundreds of mutual aid groups started across the country to help share food and other supplies with people in need. Some of them are still doing this important work! Websites like Mutual Aid Hub and this NYC directory can help you find a group in your area.
Disclaimer: This is not sponsored content, these recommendations come from my own research and reporting on COVID-19. If you’d like to recommend another organization, let me know and I’ll include it in a future issue.
Hispanic or Latino New Yorkers were more likely to report Long COVID symptoms than other demographic groups, in a 2021 survey by the city health department. Chart via THE CITY.
I had two new articles about Long COVID published this week:
This story in Science News describes how researchers are working to fill gaps in Long COVID data, largely by collaborating with patients and across different areas of medicine.
This story in Gothamist/WNYC describes three public Long COVID clinics run by New York City Health + Hospitals, which offer a range of care to New Yorkers with the condition but fall short of all the specialties needed for comprehensive treatment.
The reporting process for both stories gave me a lot to think about, in considering potential improvements in recording who has Long COVID and how this chronic disease impacts people.
And we have a lot of room for improvement. There are plenty of reasons why Long COVID research and data collection are currently difficult, ranging from a lack of consistency in how the condition is diagnosed to historical underfunding for similar chronic diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia. For more details, see this post I wrote in May.
The U.S. scientific and medical systems also made specific mistakes early in the pandemic that contributed to our current data gaps, including the dearth of PCR testing—leading many current long-haulers to not have positive test results from their initial infections—and early refusals by many doctors to believe patients’ prolonged symptoms had resulted from the coronavirus. Most medical schools do not spend much time training new doctors to recognize complex, chronic diseases, leaving them unprepared to tackle Long COVID.
But these problems can be addressed—especially if doctors and researchers are willing to step outside their specific fields to collaborate with each other and with patients. Here are a few specific recommendations that I learned about in reporting my stories for Science News and Gothamist/WNYC.
Listen to and collaborate with patients.
“Patients know the right questions to ask to properly document their experience,” Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (PLRC), told me in an email interview for my story.
In fact, a survey study by PLRC in which patient-researchers asked other long-haulers to describe their symptoms is considered one of the most comprehensive accounts of this condition. Other researchers have used this list of symptoms in designing their own patient surveys.
Surveys are one important mechanism of compiling patient experiences, as they can capture information that does not make it into medical records. (Common Long COVID symptoms like post-exertional malaise often are not well-captured in these records.) But patients can also weigh in on other aspects of study methodologies, such as how to collect data in a way that won’t overly tax participants or how to compare groups of patients for accurate results.
Plus, hypotheses from patients can be valuable starting points for clinical trials, as Julia Moore Vogel from the Scripps Research Translational Institute explained to me. Vogel, who is a long-hauler herself, is working on a new study at Scripps that’s informed by her and other patients’ experiences with Garmin wearable devices. The projects funded by PLRC’s grant program offer further examples of research studies informed by patient priorities.
Connect health records from different sources.
One major challenge with studying Long COVID is that this complex condition can impact every organ system in the body. You can’t just analyze heart disease records from a cardiology practice, or lung function records from a pulmonary practice. Every patient could be seeing ten or more different specialists, and all of those doctors might inform different pieces of the overall disease puzzle.
As a result, devising systems that better compile and connect records from different sources is a priority for researchers studying Long COVID. Arjun Venkatesh, a patient-reported outcomes researcher, described this as “the clunkiest part” of his work: there are a lot of “hidden barriers” to connecting records, he said, ranging from privacy protections to technical mismatches. (For example, a patient requesting their records from a particular doctor might be asked to provide a fax number, something most people do not have in 2022.)
Still, new projects are in the works to make this type of data sharing easier. One example is Kindred, an app designed by Yale researchers that empowers patients to request their electronic health records and share them with scientists studying Long COVID. Patients also have more legal protections in making data requests now, thanks to a new federal rule that took effect this fall.
Use wearables and other new tracking technologies.
Smart watches, Fitbits, and other similar trackers are usually advertised for consumers interested in better tracking their individual health and fitness. But they can also provide valuable, long-term data to researchers studying health conditions like Long COVID.
The Scripps Research Translational Institute is one institution focused on wearable devices, through studies like Vogel’s and another program called the DETECT study, led by epidemiologist Jennifer Radin. In DETECT, researchers compile data from people across the country who have volunteered to share their wearable device data with Scripps. After one of the participants gets COVID-19, the scientists can compare their post-COVID health indicators to the patient’s pre-COVID baseline.
“We compare each person to themselves over time,” Radin told me when I talked to her for my Science News story. This method is different from traditional medical research, in which two similar groups of people are compared to each other on a population-wide basis.
Wearables research faces a lot of its own challenges, such as expanding access to more people (by making devices more affordable or even giving them to study participants for free) and creating analysis systems that can make sense of thousands of data points from each patient. But I personally find it fascinating and hope to continue covering this area. I was even inspired by my reporting to buy a smart watch, as a holiday present to myself.
Local surveys and outreach in partnership with community groups.
Anyone can get Long COVID—young or old, vaccinated or unvaccinated, with or without prior health conditions. But a lot of people still don’t know about this chronic condition, even when they might be experiencing long-term symptoms themselves.
As a result, a major priority for Long COVID researchers and patient-advocates is improving education and outreach about this condition. New York City has a program that could serve as an example here: NYC Health + Hospitals runs a hotline called AfterCare, which residents can call to learn about Long COVID and city resources, including the public clinics I wrote about.
While AfterCare has proactively called New Yorkers who previously tested positive for COVID-19, the program’s administrators are concerned that it’s likely not reaching everyone who could be served by the hotline. Local long-haulers who I talked to for my Gothamist/WNYC story want to see broader outreach—like subway ads, billboards, and commercials—telling people about Long COVID.
These same outreach programs could also help researchers collect more comprehensive data about Long COVID. Last week, THE CITY, another local NYC outlet, reported on some early results of a survey conducted by the city health department to find out which groups of New Yorkers are most vulnerable to the condition. Unsurprisingly, the survey found that Hispanic/Latino residents and those living in the Bronx were disproportionately impacted.
I hope to see more local health agencies follow in NYC’s lead to conduct surveys like this one, paired with outreach and education about Long COVID. This type of data could go a long way in showing political leaders where more resources are needed.
Long COVID and ME/CFS patients protest in front of the White House, telling Biden that the pandemic is not over and demanding action on their conditions. Image courtesy of ME Action.
“The pandemic is over,” Biden said, while walking through the Detroit Auto Show with 60 Minutes correspondent Scott Pelley. “We still have a problem with COVID. We’re still doing a lot of work on it. But the pandemic is over. If you notice, nobody’s wearing masks, everybody seems to be in pretty good shape.”
Most of the debate and dissection of this interview has focused on Biden’s statement that the “pandemic is over.” Is it, actually? (Epidemiologists say no.) Does he have the authority to declare it over? (No, that’s a job for the WHO.) Was his statement just reflecting what most Americans are already thinking? (Depends on who you call “most Americans.”)
See, I think the key part of Biden’s quote here actually comes at the end: “everybody seems to be in pretty good shape.” Seems to be is doing a lot of work here. In the interview, Biden is strolling through the auto show, through groups of unmasked people looking at car exhibits.
He is not actually talking to these bystanders, asking them whether they’ve lost loved ones to COVID-19, lost work during the pandemic, or faced any lingering symptoms after catching the virus themselves. Biden also isn’t considering the people who were excluded from this auto show: the Americans who were left disabled with Long COVID, and those still taking safety precautions due to other health conditions.
Images of the auto show, like those of packed indoor restaurants or maskless stadiums, seem to suggest that, yeah, Americans no longer care about COVID-19. But there are plenty of other images that don’t make it into high-profile media settings like Biden’s interview.
Today, I invite you to consider a few of the images that Biden isn’t seeing. Here are 12 statistics showing how the COVID-19 pandemic continues to have a massive impact on Americans:
At least 400 Americans are dying with COVID-19 every day, about 47,000 deaths total between June and September 2022. Daily death data tend to be underestimates, because it can take weeks to process death certificates (and numbers are often retroactively edited up). But we can still see that hundreds of people are dying each day. As Sarah Zhang points out in The Atlantic, this is several times the threshold experts set in early 2021 for calling the pandemic at an end.
About 25,000 people are currently hospitalized with COVID-19 cases. Yes, many of the people included in this statistic probably entered the hospital for another reason, then tested positive as part of routine screening. But incidental coronavirus infections still put pressure on the hospitals caring for these patients, and can intersect with a wide variety of other health conditions, potentially causing long-term issues for patients.
About 7.6% of adults are currently experiencing some form of Long COVID, as of early August. This estimate, which I pulled from the Census and CDC’s Household Pulse Survey, rises for certain demographics: almost 10% of women, 11% of transgender adults, 11% of adults with less than a high school diploma, and 15% of adults with a disability are currently experiencing Long COVID.
Hundreds of Long COVID and ME/CFS patients protested at the White House and online on Monday. Biden’s statement coincidentally landed the night before a planned protest, in which patient-advocates called for the president to declare a national emergency around Long COVID and ME/CFS. The protest was covered in the New York Times,MedPage Today, the BMJ, and other outlets.
Long COVID and ME patients are at the White House calling for action on these conditions! Chants I've heard on the livestream include: "No treatment, no peace, we won’t ever cease," "Too sick to chant, funding now." #MillionsMissingpic.twitter.com/phJiTzgwzm
19 patients, patient-advocates, and experts testified at a New York City Council hearing about Long COVID and gender on Thursday. Long COVID patients and those with related conditions (like ME/CFS and HIV) talked about dismissals from doctors and inability to return to their pre-COVID lives. They called for more comprehensive medical care and other forms of financial and social support for patients. I covered the hearing for Gothamist/WNYC.
About 2.5 million adults were recently out of work due to a COVID-19 case, either because they were sick themselves or were caring for a sick person. Another 1.6 million adults were out of work due to concern about getting or spreading COVID-19. These statistics come from the most recent iteration of the Household Pulse Survey, conducted from July 27 to August 8, 2022.
About 2.2 million adults were recently laid off or furloughed due to the COVID-19 pandemic. Another one million had their employers go out of business due to the pandemic, and 900,000 had their employers close temporarily due to COVID-19. These data are from the same Household Pulse Survey.
Over 50 million adults experienced symptoms of anxiety for at least half the days in the last two weeks, at the time of the most recent Household Pulse Survey. Almost 40 million adults experienced symptoms of depression for at least half the days in the same two-week period.
Over 80% of Americans still support the federal government providing free COVID-19 vaccines, treatments, and tests to anyone who needs them, according to an Axios-Ipsos poll conducted in early September. A past iteration of that poll, from March 2022, found that 74% of Americans reported they were “likely to wear a mask outside the home if COVID-19 cases surge again in their area.”
About 3% of Americans, or around 12 million people, are immunocompromised and still have reason to take intense COVID-19 precautions. Immunocompromised people have been eligible for extra vaccine doses, but are still more vulnerable to both severe COVID-19 symptoms and Long COVID.
2.5 billion people worldwide still haven’t been vaccinated, according to estimates from Our World in Data. Bloomberg’s vaccine tracker estimates that, at the current pace of first doses administered, it will take another 10 months for just 75% of the global population to have received at least one COVID-19 shot. As long as COVID-19 continues to spread anywhere in the world, new variants can be a threat everywhere.
Flyer for the Long COVID and ME/CFS-led protest, happening tomorrow at the White House. Image via ME Action.
Tomorrow afternoon, patient-advocates living with Long COVID and other chronic diseases will be at the White House demanding that the federal government act urgently to address these conditions. ME Action, an advocacy group focused on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), is the leading organization behind the protest.
The protest’s demands include nationwide education on ME/CFS and Long COVID, education specifically for doctors in diagnosing these conditions, funding for research and potential treatments, and economic support for patients.
While the main event will take place in Washington, D.C., organizers are also encouraging people from other parts of the country to participate online. You can learn more about the event here. (I personally plan to watch and cover the protest remotely.)
Patient advocacy around Long COVID and related conditions like ME/CFS has grown mostly remotely over the last two years, so it’s a major milestone for patient groups to converge on the White House in an event like this one. For any journalists interested in covering the protest, feel free to email or DM me for background info, connections to organizers, etc!
A reminder that this protest is happening Monday in DC!! We need as many people involved as possible – please join if you’re able. Masks will be required for the event.
COVID-19 Data Dispatch 