Audio Transcript from September 15, 2026 R3 Seminar

This transcript is intended to provide an accurate, verbatim representation of the language used by the speakers during the R3 Seminar Growing up with Long COVID—Risk factors and school impacts held on September 15, 2026. You can view a timestamped version of the transcript with the video on YouTube.

Watch the recording or read the summary on the R3 Recap page.

Disclaimer: This transcript has been generated using AI technology and lightly edited. Please note that some errors or omissions may have occurred due to the limitations of automated transcription.

Patrick Ahearn:

So once again, welcome everyone to today's webinar, Growing Up with Long COVID—Risk Factors and School Impacts. My name is Patrick with RTI, and I'll be helping out with the virtual room today. So just a few housekeeping notes before we get started. When you log in, your microphone will be automatically muted with web cameras turned off. If you have any questions for our panelists today, please submit those into the Q&A window at any time. And if you've run into any technical issues, please let me know in the chat Q&A window as well. Closed captions are available during today's webinar. Just click on the show captions button on your main Zoom toolbar to turn those on. And we will have a brief feedback poll at the end of today's session, and the Recover team would greatly appreciate your responses. So, at this time, I'll turn things over to Quinn to kick off today's session. Thank you.

Quinn Barnett:

All right. Good afternoon and welcome everyone to the RECOVER Research Review or R3 seminar. My name is Quinn Barnett. I'm an epidemiologist with the Recover Administrative Coordinating Center, and I'll be your moderator for today's session. The goal of the R3 seminar series is to share the Recovery Initiative's research findings with researchers and the public. These seminars accelerate scientific discovery by allowing experts to share their insights on Long COVID and related conditions. In today's seminar, our panelists will share recent findings from the RECOVER Pediatric Observational Study, which will touch on how Long COVID is affecting young people as they grow and develop, as well as factors that may impact their risk of developing Long COVID. I want to start by thanking those who submitted questions in advance and remind everyone that you can submit any questions during today's presentation using the Q&A feature in your Zoom menu.

After the panel, our speakers will answer as many questions as possible. The Q&A document will also be posted with the recording of the seminar on recovercovid.org. That document will include the answers for submitted questions relevant to today's presentations. Questions about other scientific topics will be addressed in future seminars and answers to broader questions about RECOVER will be available in the FAQs found at recovercovid.org. As a reminder, we cannot answer questions about individual clinical care in this seminar.

I'm pleased to share that our panelists today are Ms. Laura Covington, Dr. Rachel Gross, Dr. Harrison Reeder, Dr. Kay Rhee, and Dr. Ann Wallace. Ms. Laura Covington has worked with children and youth in residential treatment and child protective services and has served as a volunteer firefighter and emergency medical technician. These experiences shaped her commitment to advocating for children and families. Laura's personal experience further deepened that commitment. Her son Matthew is a participant in the NIH RECOVER Pediatric Cohort, giving her a unique perspective on the participation in family voices and research. Through this experience, she's become particularly passionate about ensuring that the lived experiences of children and families are heard, valued, and meaningfully incorporated into research and healthcare. Laura currently serves in the Recover National Community Engagement Group.

Dr. Rachel Gross is a general academic pediatrician and clinical research investigator and associate professor of pediatrics and population health at the NYU Grossman School of Medicine. She's the principal investigator and director of pediatric research for the Recover Clinical Science Corps, leading the implementation of the pediatric observational cohort study. Dr. Harrison Reeder is an assistant investigator at MGH Biostatistics and assistant professor at Harvard Medical School. His biostatistical research focuses on analysis methods and risk prediction tools for complex longitudinal and survival data. He's the lead biostatistician for the pregnancy cohort of RECOVER, and his collaborative research also includes work on substance use and mental health in young adults, perinatal epidemiology and cognitive health in older adults.

Dr. Kay Rhee is a professor of pediatrics at UC San Diego School of Medicine, Vice Chair of Equity, Diversity, and Inclusion, Chief of the Divisions of Child and Community Health and Adolescent Medicine, and the Medical Director of the Inpatient Eating Disorder Unit at Brady Children's Hospital San Diego Medical Behavioral Unit and the UCSD Center for Healthy Eating and Activity Research. Dr. Ann Wallace is Poet Laureate Emeritus of Jersey City, New Jersey, and professor of English at Kean University. She serves on the NIH Recover Initiative as co-chair of the National Community Engagement Group Communications Subcommittee and on the community advisory board. As a longtime survivor of ovarian cancer, a woman with multiple sclerosis, and one of the nation's first Long COVID patients, Wallace has lived and written through illness for more than 30 years. Pain, disability, and disease have inspired and informed her work as a poet, memoirist, patient advocate, and scholar.

The topic of today's seminar is Growing up with Long COVID—Risk factors and school impacts. In this seminar, RECOVER researchers will share recent findings from the RECOVER Pediatric Observational Study, including how Long COVID affects school performance, attention, peer relationships, and educational support needs, as well as how social and environmental factors may influence Long COVID risk. Presenters will also look ahead to the next phase of the pediatric observational study, which will follow more than 4,300 participants to understand how symptoms change over time, why some children recover while others do not, and whether Long COVID contributes to new chronic health conditions later in life. The seminar will then include a discussion of how these findings and lived experiences of young people and their caregivers can help guide future research, clinical care, and educational support. Please welcome all of our panelists, and with that, I will turn it over to our first speaker, Dr. Gross.

Dr. Rachel Gross:

Thank you so much. Welcome everyone. Thank you so much for having us here today to share about the RECOVER Pediatric Observational Cohort Study. I wanted to start with the words of families with children of different ages that are living with Long COVID. So to begin, one mother of a teenager shared, "My teenage daughter had COVID in December 2022, and months later she is really struggling. She has been out of school for 6 weeks with debilitating fatigue, pain, and brain fog, none of which show any sign of letting up. All in all, COVID has been a devastatingly difficult journey for my family, and it's not one I wish on anyone."

Another mother of a school-aged child shared, "For over 3 years, Long COVID has derailed my family's life. My 11-year-old with Long COVID has missed over a year of school due to Long COVID-induced fatigue, brain fog, POTS (postural orthostatic tachycardia syndrome), and celiac. My own Long COVID journey has made caregiving a balancing act. With our lives turned upside down, we wait for a clearer path ahead." And another mother of a young child shared, "When my daughter was 5, I dropped her off at school and didn't even leave the parking lot before they called me back. She had passed out on the carpet and was too weak to sit up. That was 2 years ago. I took her to the doctor and learned it was Long COVID, and now she's able to go to school most days, but when she catches an infection, it can take her 2 weeks to recover." 

I wanted to read those quotes to honor the children and their families living with Long COVID because we know that they're missing school, they are missing their friends, they're missing out on many important aspects of their childhood. That's what makes this work so important. Yet, we know that most of what we know about Long COVID is from studies of adults, and when it comes to Long COVID in children, there are many more questions than answers.

These gaps in our knowledge often stem from several common misperceptions, specifically the misperception that children do not get Long COVID, and if they do, their symptoms must be the same as those of adults. And also, if they do, they must get better quickly. We know that these statements are not true and have led to significant under-recognition of the public health crisis facing our children today. And so, RECOVER was designed to fill these research gaps, and RECOVER is a national project with up to 40,000 people of all ages and races and ethnicities in almost every state across the United States. And what's really unique is that it covers the entire lifespan, enrolling cohorts of adults, children and their caregivers, and pregnant participants and their infants.

And to date, the pediatric study has over 22,000 participants that contribute data to RECOVER Pediatrics, and they have brought together 4 different cohort types to make what we call our meta cohort. This includes children in our main cohort, which are participants newly recruited into RECOVER, as well as an existing study called the ABCD study, which is a longitudinal study of teenagers that also participate in a part of RECOVER, and our music study, which are children who had a special form of Long COVID called multisystem inflammatory syndrome in children (MIS-C) early in the pandemic, and the infants that are born to our pregnant cohort that may or may not have been exposed to SARS-CoV-2 during the pregnancy, as well as caregivers that also enroll.

We have a diverse cohort, with 8% identifying as Asian, 14% identifying as Black, and 28% identifying as Hispanic. This slide gives you a summary of our overall pediatric study aims. We have participants ranging from birth through 25 years old who both are those with and without a history of a SARS-CoV-2 infection and those with and without a history of Long COVID. First, we aim to characterize Long COVID based on symptomatology by different child age groups, and then we aim to integrate multiple different types of data longitudinally over time to further characterize different types of Long COVID, [learn about] the risk and resiliency factors associated with Long COVID, and really to understand the underlying mechanisms of disease so we can ultimately develop and evaluate treatments and interventions. All of these are being refined over time as we learn more from the research.

So first, we aim to characterize Long COVID based on symptomatology by age. And to start, we published a paper in JAMA which characterized Long COVID in school-aged children and adolescents. Overall, we found that symptom patterns can be similar but distinguishable across age groups and distinguishable from what's experienced by adults. Overall, we identified some symptom clusters or different types of Long COVID that varied by age. The 2 clusters in the middle we found in both school-aged children and adolescents, including one where children experienced multiple symptoms across multiple organ systems and a second where symptoms were predominated by pain, fatigue, and low energy. But we also found 2 unique clusters in the school age group, one predominated by trouble sleeping and trouble with memory and focusing, and another characterized predominantly by stomach pain, nausea, and vomiting. And finally, the adolescents had a unique cluster associated with change in smell and taste as their primary symptom.

But then what about our youngest children? So, we published a paper in JAMA Pediatrics focused on early childhood, and in summary, we found that symptoms of Long COVID were variable in this age group with the most common symptoms in infants and toddlers, including prolonged trouble sleeping, fussiness, poor appetite, stuffy nose, and cough. And the most common prolonged symptoms in preschool-aged children included cough, daytime tiredness, sleepiness, and low energy. And if you're interested in learning more about Long COVID in early childhood, we held a prior R3 seminar on this topic, and we'll be putting the link of that in the chat. And so, there is a lot of ongoing work and research being done within RECOVER Pediatrics, and we are actively integrating multiple additional types of data to characterize these Long COVID phenotypes over time to identify risk factors both for developing Long COVID as well as symptoms that occur over time, deep dives into understanding the underlying mechanisms, serving as a platform for developing and evaluating treatments over time.

And this is being done... We have generated a huge wealth of data from children of all ages with over 20,000 symptom surveys and over 5,000 office visits that include a variety of different tests, including [of] neurocognitive development. We have numerous laboratory results as well as over 20,000 biospecimens stored for additional studies. And this is really serving as a platform for us to be able to do deep mechanistic work as part of our systems biology project where we are conducting comprehensive multi-omic analyses, both of adults and children. Over 3,000 children will be having these analyses where we're doing deep dives to understand the genome or the different genes or DNA, transcriptomics or how DNA is translated into RNA, epigenomics, how different genes are turned on and off, proteomics, all the different proteins in the body, and metabolomics, all the different molecules in the body. So this will really help us to learn what targets of treatment need to be. And so this lays the platform for us to be able to characterize the pathobiology to define Long COVID subtypes, to identify prognosis and diagnosis over time, and to identify targets for treatment.

I wanted to highlight that the NIH has a funding opportunity that's open right now, specifically to focus on pathobiology studies to uncover the biologic mechanisms of Long COVID. So there's a QR code here for those that are interested, and this is also on the website. And so researchers can propose studies using bio samples and data from the RECOVER observational cohort studies, including our pediatric study as well as the ongoing RECOVER clinical trials. So there are many next steps for further understanding pediatric Long COVID, and you're going to hear about some of the research that we've done to date today, but we know that pediatric Long COVID can look different from adults, and so it's critically important for us to understand the clinical course of Long COVID in children and how symptoms begin to change as children grow, to identify risk factors, not only for the development of Long COVID, but for the clinical course over time, to identify the pathophysiology, these underlying mechanisms and potential biomarkers, and to support the desperate need for clinical trials and therapeutics that focus on children, both to address symptoms as well as the underlying causes, because we know that Long COVID has the potential to impact population health for decades to come.

I [would] like to include this…piece of artwork from Long COVID families that an adolescent with Long COVID had submitted that really highlights what's happening in children's lives. And often they describe that what you can't see, that you don't look disabled is what often children may see and she's screaming to be heard. And this research is really to honor the families and children living with Long COVID. And so, I'm going to stop there and hand it over to our next presenters.

Dr. Kay Rhee:

Great, thank you. I think I'm next. All right, let me share my screen. You guys can see that okay? All right. So, I'm going to talk next about some of the work we've been doing, looking at the social determinants of health and how it impacts pediatric Long COVID. And as Dr. Gross showed earlier, this is one of the major goals of the study. And so here in the upper right, you can see that we did want to focus on trying to understand what are some of the risk and resiliency factors associated with potentially developing Long COVID. So, as Dr. Gross mentioned too, there are lots of other factors that could be involved—biologic, genetic factors as well—but we were going to specifically focus on the social determinants of health in this study, and just to make sure everybody is on the same page about what this is, the social determinants of health are really the non-medical factors that influence health outcomes. And so people typically think of these as the conditions in which people are born, work, live and age, and the wider set of forces and systems that shape the conditions of daily life.

And you can see in the graphic here that the 5 main categories that people cluster these social determinants of health are in the education realm, healthcare and health access to healthcare, the quality of your neighborhood and the built environment, so more of the structural things, but also what is the quality of the social and community context, so interpersonal relations and things like that. And then finally, economic stability, so income level, access to resources, and things like that. So in general, lots of other studies have shown that adverse social determinants of health are associated with poor health status in children and in adults, but most of the research looking at SARS-CoV-2 or COVID have really focused on what is the relationship between social determinants of health and the risk of contracting the infection itself, the SARS-CoV-2 virus. There hasn't been a lot of work looking at this relationship between social determinants of health and developing Long COVID, so that's what we set out to do.

And one of the questions I often get asked is why would a social determinant of health factor have anything to do with getting Long COVID? And so, I'm just going to briefly go over this, but essentially if you focus on the left-hand side of your screen, the acute stress, oftentimes when anybody is exposed to an acute stressor, our body goes into this action where our hormones, our glucocorticoids start to increase to help us respond to the stressor. So, our liver makes blood glucose, epinephrine, cortisol gets released, and so we start to be able to respond to whatever the acute stressor is. But over time, there's this natural negative feedback loop that will then turn off this response so that it doesn't damage our body, and you start to see a decrease then in all of these hormones, which is what should happen.

However, then if you look on the right-hand side of the picture here, you see that if there's adverse social conditions that are chronic, that you're constantly dealing with these stressors, your body actually responds in a similar way with all these hormones, but the negative feedback loop doesn't actually work. It starts to get numb and doesn't respond to this negative feedback loop. So if you're constantly having these elevated levels of glucose... I mean cortisol and epinephrine, you're going to start to develop things like depression, anxiety, difficulty sleeping, but also physiologically higher blood pressure, higher glucose levels, and ultimately a poor immune function, which is the key to, I think, the risk of developing Long COVID. So many other studies are starting to look at some of the underlying causes of developing Long COVID, and a lot of it has to do with things like your immune dysregulation or autoimmunity, and your body is starting to attack itself. So if your immune system is already weak because of chronic stressors, you're not going to be able to tolerate any of these other things that are happening because of the SARS-CoV-2 infection.

So, because of all this, we really wanted to understand the relationship between adverse social determinants of health factors and its relationship to developing Long COVID in school-aged children and adults. And as you can guess, our hypothesis was that several adverse social determinants of health factors would be associated with the greater odds of developing Long COVID. Dr. Gross mentioned what the study looked like and the study design. This is just here to remind people that we did use the tier one group of participants in the RECOVER study. We took the data from caregivers who completed surveys about their children between March 2022 to August 2024. And one of the things we had to make sure that we were capturing the right cohort here is that these caregivers had to have completed their surveys at least 90 days after their child had their first SARS-CoV-2 infection, but not within 30 days of reinfection because we wanted to make sure that we were really trying to capture symptoms that were associated with their first SARS-CoV-2 infection. And then we limited this study looking at children between the ages of 6 and 17. And just a quick review of the exclusion criteria. If parents or participants did not complete their symptom survey, we didn't include them in this analysis. If they didn't know their first date of infection, we didn't include them. And also, if they had MIS-C, which is a different symptom cluster and not necessarily Long COVID per se, we also excluded them from this analysis.

So, this is just a slide from one of the manuscripts that Dr. Gross mentioned early on. This is the symptoms clusters that are associated with school-aged children and adolescents that we found had a stronger association with potential Long COVID symptomatology. And so, you can see here for the children, the 10 symptoms for school-aged children that were highly associated with Long COVID, and then for adolescents, you can see here too. Our main predictor or independent variable, as you would call it, are the social determinants of health factors. And here I just want to show the number of factors that we looked at, and we tried to categorize them into the 5 different domains, which you can see here in the colored bars. But you can see with the economic stability, we looked at a lot of different factors and we put them together in a cluster.

And so typically with all these kinds of analysis, a lot of times different studies will look at each of these individual surveys or items to see if... Let's say, perhaps food insecurity. Is food insecurity associated with developing Long COVID? Because we had so many factors here, we decided to do a little bit of a, I would say fancier analysis, and we tried to cluster these different symptoms or different social determinants of health factors into clusters so we could better categorize the different cohorts of families that we had in our population. And this is just a little diagram here to give you a sense of what we were trying to do. Because we had so many variables and so many factors to consider, we tried to cluster them to see what sort of groupings we could find. And this is not from our paper, but this is just an example.

You can see here the clusters of families in red were characterized by having housing instability, being not married and things like that. They also had a lot of food insecurity, limited access to cars and things like that, and also experienced loneliness, high smoking rates and things like that. But interestingly, there are all these other different clusters. There's this group that's characterized in purple and this green group here, which were also not married, had kids, but not experiencing a lot of these other factors. They weren't food-insecure, they didn't have as much trouble with access to transportation, but they did still have this factor here which was characterized by having less exercise.

So you can see with this kind of analysis, it helps us to try to put together these different factors so we can better understand what's going on with the families. And so, we did latent class analysis, or we developed latent classes for each of the 5 social determinants of health domains, and then we started to look at this relationship with Long COVID. And then we also co-varied for some of these traditional factors like age, sex, time of infection, and method of recruitment.

So I'm just going to highlight here the demographics of this population. It mirrors a lot of what Dr. Gross was saying. And if you just focus here on the right-hand side, you can see again, we had a pretty diverse population in this cohort, 25% Latino or Hispanic, 54% non-Hispanic, White. And then you can see here the range or the differences in terms of vaccination. About a little over a third of this cohort was fully vaccinated, but another third was not eligible for vaccination. And if you think about the time of this when we recruited these participants, the school-aged children did not have access to vaccines at the time. So it definitely characterized or contributed to the characteristics of this sample.

So as I mentioned before, if you looked at each of these social determinants of health factors individually, you can see here that the odds of Long COVID were higher for all of these factors. If you had any of these social determinants of health factors, there was a greater risk of having Long COVID. And so, in my opinion, it doesn't help us that much because everything was contributing. So what we did here is develop the latent classes or the clusters of characteristics of the different populations. And so, I'm just going to go through some of this, so you get a sense of what our cohort looked like.

But in this first diagram up here, this is the social determinant of health factors related to economic stability, and you can see here we had 4 classes that were identified with regards to economic stability. And with all of the classes, the lowest class, class one, is the group that was experiencing the least number of adversities, but as you go up in the number of classes, you can see an increase. And the green class here, you can see class number 2 had 100% of people in this cluster had difficulty covering expenses, but not all of them were experiencing food insecurity or were characterized by having an income less than 120% of the federal poverty level.

So you could see this class was experiencing some adversity. Class 3 was experiencing more. You could see about 50% of them were having difficulty covering expenses, and a majority of them were receiving some kind of government support. And this government support was related then to almost no food insecurity in this cluster 3 group. However, in the cluster 4 group, again, a lot of difficulty covering expenses, receiving a lot of government support, but still experiencing a lot of food insecurity. So you can kind of see how then not everybody's experiencing the same thing, but you could see that there are clusters of families that were experiencing 1 of these 4 classes.

So similarly with all the other domains, we did similar work, and I'm just going to highlight the social and community context here. Again, class 1 had very little adversity in this domain except for some discrimination. A third of them were experiencing discrimination. Class 2 was characterized by a lot of low social support. About a third of the families were in single parent homes. But then class 3 here in particular, again, two thirds of the parents or families were living in single parent homes. 100% of them though, were experiencing discrimination and about 80% of them had low social support. So you can see characteristically how these groups differ.

So I'm not going to go through all of the different domains here, but I wanted to get to some of the main results. So when we looked... Highlighted in this middle column. When we looked at the odds of Long COVID for each of the 5 domains and the different clusters, so economic stability, social community context, caregiver education, the neighborhood environment and healthcare access, you could see again that almost every cluster except for the baseline clusters, the clusters that were not experiencing a lot of adversity had a higher odds of developing Long COVID.

Now, when we started to then control for the other co-variates like sex, age, timing of infection, we saw a few of these clusters really started to pop out as groups that had increased risk of developing Long COVID, and you can see here it was cluster 2 and cluster 4 in the economic stability group and cluster 3 in the social community context group. And I'm just going to remind you here, class 2 and class 4 in the economic stability group cluster, these groups were experiencing more food insecurity than the other 2 groups. There was a lot of similarities in terms of difficulty covering expenses, receiving government financial support and things like that, but the food insecurity was really higher in these 2 groups. And then similarly in class 3, what in my opinion really stands out in this group is that 100% of them were experiencing some form of discrimination.

So in sum then, when you think about all of these social determinants of health risk factors, there are a few things that sort of stand out from the rest of them, and we created this infographic to kind of highlight this, but it was this access to nutritious food, access to resources, having low social support, and experiencing discrimination or unfair treatment. These factors in particular were the strongest predictors of whether a child would develop Long COVID. And so from this work, we're trying to highlight and sort of pinpoint where should we put our focus because there are so many things that we could address, but given limited resources, we do need to try to focus on what might be some of the heavy hitters or things that might have the greatest impact.

So I wanted to acknowledge all the work that went into this and all the participants and their families for contributing to this data because it really does help us better understand all the factors that we should be considering when we're trying to understand what to do about treating or preventing Long COVID. And so, I'm going to end it there. Thank you.

Quinn Barnett:

All right. Thank you so much, Dr. Rhee. We'll go ahead and turn it over to Dr. Reeder for presentation on school difficulties in Long COVID in children and adolescents.

Dr. Harrison Reeder:

Okay. All right. Is my screen sharing or are the slides sharing? Okay. So hi, everybody. Thank you for being here. My name is Harrison Reeder. I am an investigator at Mass General Hospital Biostatistics and assistant professor at Harvard Medical School and a biostatistician, part of the RECOVER Data Resource Corps primarily in the pregnancy cohort, but also working in adult and pregnancy studies in pediatric studies in RECOVER, and today I'll be talking about some of our pediatric work, specifically looking at the connection between Long COVID and school and functional difficulties in children and adolescents.

Okay, let me try again with the slides. This happened actually last time. It took 2 attempts to get it to go. Okay. There it is. Great, thank you. All right, so actually I'll maybe start with the piece that Kay ended with, which is kind of acknowledging all of the contributors to this work that we've been doing. So this work I'm going to share about today has been published, and this is the citation for it if you're interested in, and from this, it's immediately clear how many people were involved in the study, and then beyond this, all of the participants and all of the different sites and people contributing to the work of RECOVER. So I figured I would start with that, and it ties nicely to Kay's sharing.

So obviously I think many of us are here because we're aware of the impact that Long COVID has across the lifespan, and in particular in children and adolescents, and previous research has shown that as many as 1 in 5 children and adolescents experience Long COVID, and just in terms of magnitude, it represents potentially millions of children experiencing or living with Long COVID. And while there has been a lot of work, including work that we've already been hearing about, trying to better understand the different types of Long COVID and manifestations of it, continuing to link experience of Long COVID with what we might call functional outcomes such as school performance, cognitive development, social development, has been relatively less well understood so far. And obviously what's important about this is the impact that slower development or negative changes in school performance and things like that have not just on a child's healthy development, but also on their longer-term life course and experience, and more generally our population, the impact as these millions of children continue to grow.

So with that in mind, research to date has primarily considered the relatively broad impacts of the pandemic itself on children's educational outcomes, and I think many people are aware of documented impacts of the pandemic period on achievement and development in children. And these studies, this is an important trend, but so far there has been relatively less work looking at the impact corresponding to experience of Long COVID itself or the impact of a SARS-CoV-2 infection on longer term outcomes like this. And so there has been a little bit of work looking at this, but using the data that we've collected in RECOVER, we wanted to investigate this relationship further.

So our objective with this project was to evaluate the relationship between Long COVID and school-related and other developmental difficulties among children and adolescents using the RECOVER pediatric cohort study, and in particular within 2 age strata that we've seen some reference to already. So school-aged children between ages 6 and 11 and adolescents between ages 12 and 17. To do this, we designed an analysis that bears some resemblance to the one that Kay was describing looking at social determinants of health.

And in this study, we looked at participants in recovered school-aged children and adolescents who had a history of SARS-CoV-2 infection at the time that they enrolled. And like Kay mentioned, we are specifically looking at children who are at least 90 days after their first infection and also at least 30 days after their most recent infection so that when we're gathering information about them, we're not seeing specific symptomatology related to a current acute infection. And like the other study that we've heard about, we also are focused on children who do not have MIS-C at the time of enrollment.

Using similar kind of definitions that we've used in other studies, including the social determinants of health (SDOH) study that were developed in the earlier work that Rachel mentioned looking at Long COVID sub-phenotypes, we defined Long COVID or the presence of Long COVID [LC] at this particular enrollment study visit using the Long COVID research index defined based on prolonged LC-associated symptoms. So Kay shared the lists of symptoms that are used that are distinguished specifically by age to be sort of age-appropriate 10 symptoms for school-aged children and 8 symptoms for adolescents that contribute to this summary score. And using thresholds determined for each age cohort, we distinguish what we think of as LC-probable versus LC-indeterminate children that we can use to then compare Long COVID and evaluate its relationship with functional school outcomes. So because of these separate definitions, we analyzed these 2 groups separately by age, school-aged children, and adolescents.

And comparing these experiences, we then looked at a set of different outcomes that inform different understandings about different aspects of children's academic performance and social experience and self-regulatory capacity. So primarily we looked at a caregiver report about a child's grades becoming a lot worse. And then secondarily, we looked at a report that children are having moderate or severe difficulty paying attention to school, homework, or with books and games; whether a child is never, rarely, or only sometimes having fun with friends; and whether a child is having an active or in-process individualized education program at their school. And this is more of a process outcome that helps us to understand the relationship between Long COVID and whether or not a child is in need of and receiving specialized education, instruction, support or services through this kind of process in a school setting.

So to compare or to evaluate relationships between the Long COVID and each of these different outcomes, we designed an analysis where separately within each age cohort, we created what are called matched groups. So every child within each age cohort with Long COVID was matched to either 1 or 2 participants in that cohort without Long COVID, such that every one of those pairs had the same sex assigned at birth, were within one year of age, had their first infection within 45 days of one another and had enrolled in RECOVER within 90 days. So we create 2 groups, one with and one without Long COVID that are almost exactly the same with respect to these characteristics because we have matched pairs of participants, one with each kind of Long COVID history.

Using these matched cohorts, we can then compare how these groups look with respect to each of our outcomes. When we do that, we used regression to calculate adjusted risk ratios, additionally adjusting for several of the social determinants of health measures that fed into the work that Kay described earlier. So we focused on inclusion of caregiver education, self-reported food security, and a child's vaccination status as of their first infection as a few key measures that we thought could be relevant to the relationships.

To give you a sense of what the cohorts that we are investigating look like, we have 2 sets of columns, one for the school age group and one for the adolescent group, and here we can see that by design, with and without Long COVID, these groups look exactly the same because of the matching, but that in general, we have in the school age group almost a fifty-fifty breakdown by sex and a slight skew toward female participants in the adolescent study. And then we have a plurality of participants whose infection occurred in the kind of Omicron-dominant era after January 1st, 2022. And then as Kay mentioned as well, we have a range of different histories with respect to vaccination status, including a number of children who, as of the time that they were infected, vaccines were not yet available. In addition, we have a little bit of information about these social determinants of health characteristics that we included as adjustment variables in our final analysis. And it's worth noting that in terms of the school experience of these children, the majority attend public schools, but there's sort of a range of schooling experiences that these children in our study have.

So when we look now at the results of our analyses, we have 2 panels here. So the top corresponds with the findings in the school-aged children, and the bottom corresponds with adolescents. And what we have is in our matched cohorts of children with and without Long COVID; we have the proportion of children in each group who experience each of these 4 outcomes, and again, separately by age strata. And then the adjusted risk ratio is a ratio of the proportion between groups adjusting for those additional variables mentioned earlier.

And when we adjust for covariates, what we find is that the proportion of school-aged children with Long COVID who had worsened grades was 2.18 times higher than the proportion in children without Long COVID. So that gives you an interpretive sense of how to take in each of these numbers. And I'll give a moment to take another look at this, and then we can continue on to summarize that generally speaking across these analyses, what we find is that when we look both at school-aged children and at adolescents, we see that, compared to children without Long COVID, those with Long COVID are more likely to have worsened grades, difficulty paying attention, limited fun with friends, and an active or in-process individialized education program (IEP) in their school setting.

And these associations that we observe are comparable across the 2 age strata, and they represent meaningful differences in the academic performance, self-regulatory capacities, and social peer interactions of kids who are experiencing Long COVID relative to those who are not. And so, this is evidence from RECOVER representing one of the largest looks at this kind of question to date.

There are several things to bear in mind when looking at these results. One is that, by design in RECOVER-Pediatric, this initial visit generates the data that we use for this analysis; the information is collected via caregiver reports. So all of our outcomes are being reported by the caregiver. And even though they're answering questions that are from validated questionnaires, in the future, we would like to continue looking at objective assessments of the children using neurocognitive and other wellbeing validated assessments.

Additionally, these exposure and outcome variables are being collected at the same visit rather than representing longitudinal looks at Long COVID and subsequent outcomes. And as a result, they represent cross-sectional associations, but don't disentangle a relationship over time of how these unfold. And that's again, something that further work, which we will hear about shortly from Rachel, will hope to further uncover.

And then finally, in the defining symptoms for the Long COVID research index (LCRI) that Kay showed earlier, one of them for the school age group was refusal to attend school. And so, we did an additional analysis where we removed that as a symptom that can be defining of Long COVID because of the interrelationship it has with these school-based outcomes. And we saw that that did not change our findings.

So ending just to say that these findings represent important evidence from RECOVER-Pediatric cohort, which is large, geographically, racially, and ethnically diverse, and the findings motivate an interest in recognizing the impact of Long COVID on children across the country and how they are growing, learning, and relating to each other, and the need to continue developing and understanding school resources to help support children with these experiences. So I'll end there and thank you for listening.

Quinn Barnett:

All right. Thank you so much, Dr. Reeder. We will go ahead and turn it over to Dr. Gross for our final panel presentation to talk about the next steps for the RECOVER-Pediatric cohort study.

Dr. Rachel Gross:

Thank you both for those wonderful presentations. So I am going to finish up our session today sharing with you an overview of future plans for the RECOVER-Pediatric study, which we are calling cycle 2. So as we heard so far, RECOVER-Pediatrics has successfully established and retained a diverse nationwide cohort of participants, and this can serve for the foundation for future longitudinal studies as well as the recruitment of participants for new pediatric clinical trials.

We have data that,  collected, has enabled numerous analyses and scientific publications, just a small bit that you heard about today, that really help to provide valuable insight into symptoms, risk factors, and impacts of Long COVID. The pediatric cohort also provides a rich repository of biospecimens that will continue to be leveraged for future pathobiology and ancillary studies.

But building on this work, we know that there are critical questions that remain, particularly regarding longitudinal outcomes as children grow and develop over time, and key underlying mechanistic questions to understand specifically the underlying mechanisms that are the foundation of pediatric Long COVID. And so, because of this gap, NIH has approved funding for the extension of our observational pediatric study, and so we will be continuing to follow the cohort and further gaining a comprehensive understanding of pediatric Long COVID as children grow.

And I wanted to highlight the focus of this extension of our pediatric study. And so, these are some of the key questions that we'll be focusing on as children and young adults grow over time. And so, our first big question is related to symptom heterogeneity. So different symptoms that we see across different ages. And so overall, how do Long COVID symptoms change as children age into the next developmental stage?

For example, as we mentioned earlier, does the daytime tiredness, sleepiness, or low energy that toddlers may experience change as they become school age? Does it change into difficulties with memory and focus, or do they develop the new symptoms we commonly see in this age group, such as gastrointestinal (GI) symptoms or stomach pain and vomiting? And do school-aged children continue to have the same symptoms as they become teenagers? For example, if they had GI symptoms as a school age, do they still have GI symptoms when they become a teenager, or do those resolve and new manifestations commonly seen in teenagers such as dysautonomia emerge? These are questions that we don't know the answer to yet, but that [are] critical to study over time.

Our second big question is related to the clinical course of heterogeneity. So how does a child's age affect persistence or improvement of Long COVID over time? So does the age at which they developed Long COVID change their clinical course over time? And how do key moments in development such as puberty affect these symptoms over time? And then our final big question is related to the new onset of chronic conditions. So what new or worsening conditions can occur as children grow and age?

And so, these are some of the questions we're aiming to answer in the next phase of the pediatric study. And so, this slide gives an overview. So these are the study aims related to the questions that I mentioned. So our first aim is to assess whether pediatric Long COVID symptoms and clusters evolve as an individual transitions to the next age course stage, and to identify the underlying pathobiology or mechanisms related to these changes, and then to investigate the duration of pediatric Long COVID and to understand why symptoms or the conditions are persisting, remitting, relapsing, or improving, and to evaluate the impact of Long COVID on new and worsening chronic conditions.

And so, we will be continuing to follow all of the pediatric participants that we are following currently over time in both our main cohort longitudinal study and the infants born from the pregnancy cohort. And so overall, we anticipate about 4,300 participants being continued to follow in this next phase. And they will be participating in 2 additional annual visits, which will include continued remote surveys that will be collecting data from caregivers and participants. They will also include in-person assessments as well as more biospecimen collection.

And so, we will be transitioning seamlessly from the first phase of RECOVER into the second at the end of this calendar year and following the cohort for 2 more years. This will give us a total of all of our participants who are being followed over time, having at least 4 to 6 years of data. And so, our RECOVER pediatric cohort is really uniquely positioned to examine how Long COVID affects children over time. Because when we looked, we know that adding these 2 additional years of follow-up, that 92% or more of our participants will be transitioning to the next age group in the study. Many are transitioning across more than one age group, and so it really helps us to answer these key developmental questions.

And so, each of our participants, as I said, will have 2 additional visits, another visit in 2027 and another visit in 2028, which will include our remote assessments for surveys, in-person assessments, and biospecimen collection. And we really did a lot of work over the last year to bring different people together, both Representatives, investigators, subject matter experts, to learn from this first phase of RECOVER and think about what we wanted to add to the study to enhance the research even further.

And we put together 5 working groups, 3 that focused on different survey elements, learning about how we can enhance our assessment of symptoms and other conditions that children are experiencing, how we can enhance our school-related assessments, how we can learn more about different medication and treatments that children are having and how they relate to their outcomes, and then the in-person assessments and biospecimen collection.

And I wanted to give you a highlight of some of the new things that are going to be added to the study going forward. And so, the group that focused on symptoms and assessing associated chronic conditions came together and wanted to work on doing a few things. So we are going to continue to assess the wide range of symptoms and conditions being experienced by children, but we wanted to learn from the initial data and do a deeper dive into key areas.

And so, additional in-depth assessments will focus on fatigue, pain, sleep, gastrointestinal symptoms, respiratory symptoms like coughing and eating and appetite, particularly in our younger children. And so, when children report experiencing a certain symptom that relates to these domains, they will be asked more in-depth questions so we can get a deeper understanding of these experiences. We're also going to be adding more surveys related to broader associated syndromes and conditions.

And so, the RECOVER-Pediatric Study already has extensive data on dysautonomia, POTS, mast cell activation syndrome (MCAS), post-exertional malaise (PEM), and using the COMPASS-31 (Composite Autonomic Symptom Score-31)and other measures, but the group came together to add additional measures related to other associated, and this is just a few of them that are mentioned here, relating to clotting, autoimmunity, connective tissue disorders, Lyme, and others, as well as enhancing our functional assessments.

The school group came together to look at building on data such as Harrison presented today and other work we're doing, how we can enhance our school assessments. And really 3 different domains were talked about in the group and being added to the surveys. And so more assessment about school performance, which might include information about grades, testing, the ability or changes in participation in various activities such as sports, clubs, music, volunteering, and really a comprehensive assessment of the types of accommodations that children are being provided or are having trouble getting access to so we can understand how they relate to the outcomes children are experiencing.

This might be an individualized education program, 504 accommodations, individualized health programs, and really to gather detailed assessments of patterns of attendance and patterns of receiving these accommodations, and asking about the wide variety of accommodations that could be available to any given participant.

The group also came together and wanted to add questions about the experiences of stigma, both from the child's perspective of maybe feeling that they've experienced feeling different from other children because of their health and the stigma that many families report feeling in relation to school and school staff and school levels. So some of those questions will be added as well.

The group wanted to highlight and add questions really tracking the wide variety of accommodations that children with Long COVID are experiencing. And so, this is just the highlight of some of the factors that many people wanted to recommend. And so, thinking about accommodations related to attendance or flexible scheduling such as reduced course load or shortened days, gradual return to school, testing accommodations that might include extended time on tests and quizzes, frequent breaks, limiting 1 test a day, workload and academic modifications. So can families receive extra time for their assignments? Can there be a reduced workload at given times or fewer classes? And then also include assessments of physical or health support. So are there accommodations to provide unlimited bathroom access, permission to carry water, ability to rest, and those types of things that we want to be able to broadly assess and learn what helps support children.

Our group focused on medication and treatment, wanted to help support collecting this very complex data from families. And so, there was a group coming together to put in place a way of comprehensively assessing what medications participants are taking, both those with and without Long COVID, so that we can begin to look at how they're associated with Long COVID over time in the cohort. We then will be assessing medications specifically being used for Long COVID as well as other non-medication treatments such as acupuncture, diets, and many others that the group came together. And developing resources and tools to help support families collect this data at home and bring it to the sites where they'll be supported in being able to enter this type of data for future analyses.

Our in-person visits, which occur once a year, include brief physical exams, studies of orthostatic or active standing tests, and neurocognitive tests as well, objective neurocognitive assessments. The group also came together and wanted to add a few new tests that we haven't done before. One is a smell and taste test since we know that is commonly affected in children, especially older children or adolescents that describe this. But for example, we know that young children, their appetites may be affected, but what we don't know is could that be related to change in smell and taste, even if a child is not able to express or know that that's happening, and as well as a 6-minute walk test.

The biospecimen group came together to think about what types of key biospecimens we need to collect to be able to support these mechanistic studies. And so we are going to continue to collect blood samples at each of these visits, as well as non-blood samples, including stool, urine, and a variety of different swabs of the skin, nasal, and oropharynx, as well as to collect hair for future studies.

And then we're going to be able to look at some of the underlying biologic risk factors as well as underlying mechanisms. And so, we know that the school-aged children look different from adolescents, but we don't really understand why, and could this be related to puberty itself? And so, we are going to be doing hormonal studies to help to understand the role that puberty is playing in this transition, as well as looking at key underlying mechanisms of inflammation, both inflammation in the gastrointestinal tract as well as the brain neuroinflammation, and those are going to be looked at in our cohort.

So I just wanted to give you a flavor of what the next phase of RECOVER-Pediatrics will include. And overall, we are uniquely poised to leverage this extensive data generated by RECOVER-Pediatrics to have up to 6 years of follow-up for our participants. And this will enable us to work on these mechanistic studies to understand why pediatric Long COVID is happening, to be a platform for identifying treatments, a platform to inform clinical trials and serve as a recruitment platform, as well as to support ancillary studies.

And so, I wanted to thank everyone involved in the RECOVER-Pediatric studies, in particular our participants and families, all of the study sites, all of the Patient, Caregiver, and Community Representatives, our funding from the NIH, and the many institutions that are involved in this work. So thank you again.

Quinn Barnett:

All right. Thank you so much, Dr. Gross, and thank you to everyone for those great presentations. We're going to shift gears slightly and welcome our 2 Patient and Caregiver Representatives into the conversation. We'll spend a few minutes exploring their reactions and perspectives on what they've heard today, and then we'll open it up for questions from the audience. Welcome, Laura and Ann. I just have a couple questions for you both. Can you tell us just a little bit about your personal experience with Long COVID as a patient or caregiver? Maybe I will start with Ann and then move over to Laura.

Dr. Ann Wallace:

Sure. Well, first of all, thank you so much for having me here as part of this impressive panel. This work is so important, and I'm glad to share my own personal experience, so now a little bit more anecdotal. But my experience with Long COVID for myself and for my children. I have 2 daughters. They're 3 years apart in age. At the start of the pandemic, my oldest was 16, and she became infected with COVID before it was a pandemic, early March 2020. I then caught it from her, and I developed a severe case of acute COVID and then Long COVID.

I wasn't able to work for 2 years, and then even when I went back, I was still really struggling. It set me back. So, I was profoundly impacted by Long COVID. My oldest daughter, who was infected at about the same time as me, also developed Long COVID. Namely, POTS, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), [and] extreme post-exertional malaise. She had a terrible cough that lasted forever and ever. Sort of classic Long COVID symptoms at the time. She had a lot of trouble maintaining her oxygen level and struggled with POTS.

My youngest, again, 3 years younger, when she turned 16, became infected with COVID. That was December 2022. She was severely impacted. Differently, I want to say. I mean, she had a lot of GI issues, which, as we learned today, most often affects younger children. But she was 16, and that was one of her primary symptoms. But she also had profound fatigue and difficulty even speaking, putting words together. She had a lot of difficulty with word-finding. She had trouble thinking, which my oldest daughter never really had. She didn't have trouble putting sentences together and organizing her thoughts.

My youngest, when she developed COVID and then Long COVID, couldn't do very simple things that she would've been able to do in the past. She had about a 30-minute window every day where I could talk to her, and I could see then, 25 minutes in, her slipping away and shutting down. She was obviously not able to go to school. Her fatigue was absolutely debilitating. It was very hard for her to get out of bed. It was extremely isolating. Even when she tried to do her work from home, the school would try to have teachers meet with her, and it was too much.

So, that's a little intro. I'll get more into details later, but it looked different for everyone in my family. Even though my daughters were the same age at infection, the way it presented and the way it upended their lives were quite different.

Laura Covington:

Hi, I'm Laura. Matthew's story is probably very similar to yours. He got COVID when he was 8 years old in January 2021. He was attending private school at that time, and they were in school but wearing masks. We don't know if he got it from school. We actually don't know where he got it from. His brother, myself, and my husband all got it at the same time. The only one that we are aware of suffering from Long COVID is Matthew at this time. I say at this time because I don't know what the future will hold, and we don't know what symptoms could pop up in the future for any of us.

Matthew, we were lucky in the respect that within a week of him getting acute COVID, he started having Long COVID symptoms, or what they classify as Long COVID symptoms, so skin flushing, the fatigue, the brain fog. And had it not been immediate, I may have been fighting with doctors for answers and for that diagnosis. We were very lucky to have an amazing pediatrician who recognized that this was obviously from the acute infection, and we started seeing specialists right away.

Like many of you, we spent lots of time with specialists telling me all the tests were fine. The blood tests, the pulmonologists, the cardiology reports, everything was coming back clean. And I kept saying, "You're wrong. There is something wrong with my child, and it is directly from this COVID infection." We were lucky to get referred to Children's National about 2 years into our journey, and Dr. Diab, the hematologist there, did a long perfusion scan and was able to identify essentially micro clots all throughout Matthew's body. And so, he's got a whole list of other diagnoses, POTS, venous insufficiency. Literally, the list is ridiculous. But for me, I think the driving factor is micro clots, and I've been pushing for that research to come through.

I will say that we are not one of the typical families that would have fallen in the [social] risk factors [category] that we talked about. We are not food-insecure. We have plenty of resources, and if we don't have them, I'm going to find them. I'm sure that is like many of you sitting on this call. We have all the support that we could need or want. I mean, you can always have more support. But we just didn't fall into those categories that we talked about today. And it's often frustrating to be like, where do we fit? I mean, how is my kid... For a lot of people with Long COVID, they talk about how women are the people likely to get this. My kid was an 8-year-old kid. He was a boy. How are we here? But we're here.

And so, that's a little bit of our background story. He has good days and bad days. He is not in school, in person. He attends an online school, and that has helped us. I have an older son also who's 15. Matthew is now 13. My older son, who's 15, also goes to a private online school to protect Matthew from being immune compromised. We do and live an absolutely absurd and crazy life to protect Matthew and make sure that he does not get sick again, because even something as simple as strep could take us off course. I will say the other thing that I think has helped us tremendously get to where Matthew is doing, knock on wood, really well, not because he's being cured, but because we're managing his symptoms, is he's lucky enough to get IVIG (intravenous immunoglobulin). So, that is where we stand right now.

Quinn Barnett:

Thank you both for sharing that. How do these study findings that were presented today resonate with you both as caregivers?

Dr. Ann Wallace:

Well, I think for one, and it's sad that we need to say this again and again, but kids get Long COVID, right? In the very beginning, when my oldest got sick, I wrote a piece for Huff Post because people didn't believe that kids got COVID at that point, which seems ludicrous now when obviously they do. But sometimes we have to state the obvious, and this research shows that definitively and shows the wide array of impacts, and I think that that's so important.

Again, we shouldn't be there, but I will say that when my youngest... This is now winter 2023. When I took her to her pediatrician, she'd had COVID, and she wasn't getting better, and she was getting worse and worse and couldn't make it out... Hardly made it through a school day and would come home, go straight to bed, and wouldn't wake up until it was time to go to school the next day. No dinner, no nothing, had no time to do her homework. She just was flat out exhausted, and I asked her pediatrician, "I wonder if this is Long COVID." I say this having lived through Long COVID, my oldest has it. Lived through and with it, I should say. And the pediatrician said, "Oh, that doesn't really happen anymore." I know better, and I told her so, and I never saw that doctor again.

But if I didn't know better, if I didn't have this knowledge from my own personal experience, from my other daughter's experience, if I didn't have this information, that conversation could have ended right there. She pointed to my daughter's mental health and lack of motivation is why she didn't want to get out of bed. A lot of teenagers don't like to get out of bed. They like to sleep a lot. That was her justification for this crushing fatigue that my daughter had, which then developed into so many other things, especially with her eating, her inability to eat and hold food down and all of that.

The social determinants of health information, and like Laura, I don't fit into any of those categories. I feel incredibly privileged to not be food-insecure, to be highly educated, to not fall into any of those categories, and yet this illness affects everyone in my family, both my daughters and me. It's been a struggle for us from day one. I know how to fight and how to advocate, and I've lived through ovarian cancer in college, and I have MS (multiple sclerosis), so I've been dealing with medical issues my entire life, so this is not new for me. But I just think of people who don't have access to healthcare, who live in medical deserts, who don't have nutrition, who are housing insecure, and how crushing that would be, and that is for so many families, and we need to do better.

That's what this presentation tells me is that we really need to do better, and we need to look out for the most vulnerable among us and be sure that our doctors and healthcare providers know what to listen for, know what the information is. Also, I can talk about this a little later if we have time, about schools, teachers, guidance counselors, [and] administration. That has been a struggle, a real struggle. I fight hard for that, but not everybody has the wherewithal to do that kind of fighting or just the time, the resources, and so that's another huge area that we need to be working on. Using this information, we have to educate educators.

Laura Covington:

I think this research is really important. I'm seeing some of the questions in the chat, and I know it's frustrating because it seems like common sense to everybody sitting here, but we're all here because we're living this. This is either your work or someone you love or you're living through this, and so it seems like common sense to us because this is our reality, it's our daily life, we can't escape it. But I will tell you that the people, my neighbors who've lived around me for over 5 years while Matthew's been sick, and they know he's sick, and they know why, they probably don't know this.

I'll tell you, I can walk... We have a middle school that's less than a mile away, and I can go down there, and probably half of that staff probably doesn't know. The reason this is important is because these publications are being seen hopefully by the medical providers who are going to help us get the diagnoses. They're not all there yet. Like Ann said, she had a pediatrician who just denied it, basically. But that is the reality of some of us, too. Hopefully, they're reading these JAMA articles. Hopefully, they're following this research, and hopefully, the doctors here are talking to their colleagues and pushing it like nothing else because our kids' lives really depend on it.

But for CPS (child protective services), for the school personnel, if the doctors aren't on board, then no one will be. I mean, we're just lost without it. Again, I'm fortunate if you have an opportunity or you're close to Children's National, I strongly recommend them and their support. I'm in Virginia, so they're my local ones. But if the doctors are not on board, it is really hard to get anybody else on board. CPS follows what the schools say. The schools say your child is truant. They don't really care why unless you have a doctor's note. If your doctor's note is not on board... If your doctor's not on board, then you're a little bit lost, and that's unfortunate. But we have to get the doctors on board and all of them.

Dr. Ann Wallace:

Yeah, and I want to agree emphatically with that. Even when I found a Long COVID doctor for my youngest, Connie, that doctor also thought my daughter was using her fatigue as a crutch. She said, "I'm not writing any more notes for you for school." This was about 6 months in. She even talked to some of our other providers who all came back to me and said, "She's doing damage to your daughter," which I knew, "You need to find a new doctor." But I needed a doctor who could sign off, and I found a wonderful Long COVID specialist who's part of RECOVER.

But I live in the metropolitan New York area, so I have options. I live in Jersey City, New Jersey. I can go to New York. I can go to places in New Jersey. I could even get down to Philly if I needed to. But not everybody is so lucky. And if you don't have that doctor's note, then you really are out of luck with schools.

Finally, even with this fantastic new doctor that I found for my daughter, my daughter, she was not able to go to school most days, very rarely. Basically, both of my daughters missed the last year and a half of high school. My oldest is very self-sufficient and didn't have the debilitating mental fog and inability to think and use words, but my youngest did, and I finally had to ask, "What is our goal here?" in one of our meetings. Because she wasn't passing her classes, the work was too much. And finally, in her senior year, when I posed it that way, "Do we want this child to graduate or not?" It was like a switch flipped.

Then they saw it in a very different light, and they said, "You're absolutely right. We do want her to graduate." And they had to modify all of her assignments so that she could show she knew how to do things, but she couldn't do it at the volume, the scale that they wanted. So, sometimes you really need to be able to get through to your school if you've got a child who's got Long COVID, and you need your medical professionals, your healthcare providers on board with you. Those pieces are so crucial, and the advocacy is daunting. It's like a full-time job.

Laura Covington:

One of the questions in the chat was who regulates CPS agencies? It's your local state, and every CPS has different regulations even for attendance, so you would have to go talk to your state and find out those individual rules and regulations.

Quinn Barnett:

Really quick, I just want to note we're behind, but I think this is a really important conversation. So, I just want to let the audience know that if we don't have time to get to any questions from the Q&A chat, we will be posting all of those answers on recovercovid.org. I think you both touched on this a little bit, but what would you like healthcare providers or school administrators and teachers to know about these findings? What do you think is most important for them to understand?

Dr. Ann Wallace:

I think that just because a school or healthcare provider has seen one child with Long COVID, it doesn't mean that they've seen your child. We saw that the way it impacts a 5-year-old is different than an 8-year-old is different than a 12-year-old, et cetera, et cetera. Even then, every case is unique. One thing I've heard a lot is your child just needs to blank, and other kids have done blank, and they're fine. It's not a one-size-fits-all approach, and schools need to understand that as well.

I think these findings that the RECOVER studies have produced are really significant in being able to illustrate the wide range of effects. Kids have one shot at being school-aged, and teenagers, and if a child falls behind in 10th grade, or 3rd grade, or wherever, it affects their life. I mean, I'm an educator, so this is profoundly important to me because... I teach college, and so I see it in my college students, too. If a child falls behind at any of those stages, for one, it impacts the way they view school; it affects their self-esteem, their sense of value, their sense of their own intelligence, and they fall behind as well academically.

It has multiple effects on children. Also, they're ostracized. They do feel the stigma, especially from their teachers who might start to think of them as the lazy kid, the kid who doesn't do their work, who doesn't finish, who doesn't show up. And those things are not true. I would say that kids with Long COVID are trying so hard to keep up. They're working so much harder in many regards than a child who doesn't have health issues that they're battling against. It's just that you don't see it. It's invisible, which is another factor that's come up. So, those are the few things that I would end with.

One last thing is that we cannot leave colleges out of this conversation, because these kids get to college, and now they have to advocate for themselves. I cannot call my daughter's professors and arrange a meeting. She would hate it if I tried to, but I literally can't. It's illegal unless she allows it or gives me permission. But it's inappropriate. And so, you've got an 18-year-old in college, and they don't really know how to... It's a lot of work for a young adult to advocate for themselves while sick, and so I'd like to be sure that we don't forget that piece of this conversation as these young people get older and are entering a new arena.

Laura Covington:

I would just say that our lives are burning down. We feel like we're in a fire, and we don't know if we're going to get out of it. Sometimes it feels like we're beating the fire, and it's under control, and then a hotspot pops up, and we're in the middle of it all over again. I've been in some high stress jobs, and I could, at the end of the day, go home and put my head on my pillow and go to sleep. I can't get out of this one. This is my kid, and we're all sitting here fighting for our kids' lives, our own lives, and it impacts everybody in the family.

We talk about my 15-year-old who we call the invisible child, that's what they call him, because his needs sometimes get overlooked because Matthew is sick. So, when you're in the middle of a fire, nothing is happening fast enough, even when people are working their butts off, and we recognize that it is happening behind the scenes, and we appreciate it. But man, it would be nice if it could go faster, and we could get the funding, and if people could realize this is a post-viral illness without it being politicized or stigmatized. It's just a wild world we live in now. But if you see a Long COVID family, we are in the middle of a fire, and it would be sure nice for someone to throw a bucket of water instead of whatever else they're doing.

Dr. Ann Wallace:

Yeah. Well said.

Quinn Barnett:

Well, we are at time, but I want to thank you both so much for sharing those really important stories, and I want to thank our panelists for sharing their really important science and our audience for attending. I have a few announcements just to finish us off.

As Dr. Gross mentioned, researchers can apply for new RECOVER research opportunities, which will fund pathobiology studies and advance our understanding of the biological mechanisms driving Long COVID. Researchers can propose studies using bio samples and data from RECOVER observational studies, and for the first time also from RECOVER clinical trials. To learn more about this opportunity, I think there will be a link posted in the chat or a QR code that you can... direct you to that opportunity. Just a reminder, we'll also be posting a recording of the seminar. The questions we weren't able to get to today, we will also post answers to those on the website as well.

You'll also see a short survey pop up on your screen if you haven't already, and we will ask for your feedback on this seminar. We really appreciate that. If you could just take a minute to fill out that brief survey, that would be great. But thank you again to everyone for attending. Thank you to our panelists. This was a really great conversation. But thank you and have a great day, everyone.

Dr. Ann Wallace:

Thank you so much.