In this episode of the COVID Longhaulers Podcast, Jessie and Emerson sit down with Darya, a 16 yr old junior in high school from Los Angeles, and her mom, Dr. Elham Raker. Darya has been living with Long COVID since 2021, when she developed intractable migraines after a covid infection at just 12 years old. Elham is a pediatrician and most importantly a mom, who has been navigating a  system that is not equipped for kids with Long COVID alongside Darya. 

Darya shares what it’s like to grow up with Long COVID: debilitating migraines, fatigue, brain fog, POTS, and the heartbreak of reinfection after hard-won progress. Darya was making huge strides in recovery after her initial infection, only to have her progress seemingly reset by another COVID infection. Together, she and Elham speak openly about school, friendships, identity, and the toll that this type of chronic illness takes during adolescence.

Elham offers a powerful and unflinching perspective on the gaps in pediatric Long COVID care – from dismissive clinics and medical gaslighting, to the unwillingness to try off-label or experimental treatments, and the lack of meaningful research for kids and teens. She explains why “doing no harm” is causing real harm, and how parents are often forced to become their kids' case manager and advocate. You can read an article that she wrote about this issue here. 

Children and their families are often left to navigate Long COVID care on their own, with little support from the medical system. Please consider supporting organizations working to change that reality: Long COVID Kids (UK) and Long COVID Families (US) support children, adolescents and their families by connecting families with clinicians and researchers, raising awareness, and pushing for better research, clinical care, and policy protections. 

If you enjoyed this episode, please subscribe so you don’t miss future episodes of the COVID Longhaulers Podcast.

A written version of this episode and the full transcript are available on our Substack, along with a glossary to help explain commonly used terms.

You can also join our Discord server to connect with the community, and find all of our other links here. 

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team. 

In this episode of the COVID Longhaulers Podcast, Jessie and Emerson explain the basics of Long COVID. Drawing on current research and lived experience, they unpack how Long COVID is defined, who can develop it, and why it remains so difficult to diagnose and treat.

They explore how a single COVID infection, even a mild or asymptomatic one can lead to long-term, multisystem illness, affecting virtually all organ systems in the body. The episode covers the wide range of symptoms people experience, why no two cases look the same, and what current science suggests about the biological mechanisms driving Long COVID.

Jessie and Emerson also examine recovery rates and the reality of medical care today, where many patients are left navigating fragmented systems, managing their own treatment, and advocating for themselves in the absence of clear guidelines or proven therapies.

Long COVID is an ongoing public health crisis that demands sustained research, patient-centered care, and informed policy. If you are able, please consider donating to Long COVID advocacy and research organizations. Supporting this work helps advance understanding, improve care, and amplify the voices of people living with Long COVID. A list of organizations can be found here.

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, click subscribe so that you don’t miss any of our future episodes. 

Timestamps:

• [00:00] Introduction 
• [01:24] Long COVID definitions
• [05:31] Risk factors
• [07:33] Prevalence 
• [09:50] Symptoms and Daily Challenges
• [14:41] Diagnosing Long COVID
• [16:26] Treatment options for Long COVID
• [21:28] Biological mechanisms 
• [29:08] Recovery and long-term outcomes
• [33:44] Need for change, advocacy and awareness
• [39:52] Resources and closing 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team. 

As 2025 comes to an end, we’re closing out the year with a more personal episode of the COVID Long Haulers Podcast. In this episode, hosts Rush and Emerson share their own health updates and welcome back Matt, our first guest of the year, to talk about how his long COVID has evolved over the past months. Together, they reflect on what living with long COVID looks like years in: the setbacks, the small improvements, the unanswered questions, and the medical labor involved to get some kind of medical answers.

Matt talks about managing persistent neurological and gastrointestinal symptoms, navigating reinfection, and receiving a gastroparesis diagnosis. Rush shares his experience with sudden hearing loss, invasive ear surgery, and ongoing recovery. Emerson discusses the realities of ME/CFS and medication trial and error, including a small improvement with cromolyn sodium.

Thank you to everyone who has listened, shared, and supported the podcast this year. We’ll be taking a short break and will be back in 2026 with new episodes.

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team. 

In this episode of the COVID Longhaulers Podcast, Patrick shares his story of surviving two COVID infections. His first pre-lockdown infection caused severe lung damage, chest pain, and a new cardiac arrhythmia that he still lives with today. The second infection, two years later, hit him in unexpected ways, triggering intense brain fog, dissociation, and months of debilitating gastrointestinal issues.

Patrick talks openly about navigating medical dismissal, unstable insurance, and the financial and emotional toll of these chronic issues. 

In the second half of the episode [55:27], our host Rush reads a series of real community stories. These experiences showcase how little the general public and healthcare providers truly understand and how far we still have to go in recognising, researching, and properly treating long COVID.

Patrick’s story and these community experiences paint a clear picture of what long-haulers face: life altering symptoms, ongoing stigma, and a healthcare system that often isn’t prepared to help.

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team. 

In this episode, Emerson and Jessie continue their conversation with Noah, a 23-year-old former college gymnast from South Dakota, USA. In part one, Noah shared the story of how Long COVID reshaped his health and the steps he took to begin recovery. In this second installment, he reflects on what it meant to lose gymnastics – the sport that shaped his identity, and how he continues to rebuild a sense of purpose beyond competition.

Noah opens up about the emotional weight of losing his athletic career and a long-term relationship within the same year, describing how compounded grief shaped both his mental and physical recovery. He discusses how chronic illness has changed his perspective on resilience, community, and identity, and why he believes awareness and advocacy are essential for people living with Long COVID.

Together, the hosts and Noah explore themes of loss, personal growth, and hope – from the realities of being sidelined by illness to the collective power of the chronic illness community. 

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.

In this episode, Emerson and Jessie sit down with Noah, a 23 year old former college gymnast from South Dakota, USA whose life was flipped upside down after his first COVID infection in early 2024. 

Before developing Long COVID, Noah was a fit individual, who followed a healthy lifestyle and trained regularly as an elite gymnast. He is a type one diabetic with ADHD, who knew that an infection could affect his health but never expected this sort of outcome from a single COVID infection. He developed dysautonomia, chronic fatigue, PEM, MCAS, muscle twitches, dermatographism, and an autoimmune disease called Hashimoto’s as some of his many longhaul symptoms. 

Desperate to find relief and return to his former life, Noah consulted specialists from multiple departments in different states who were unable to help him. Ultimately this led him to become his own “pioneer” and experiment with new and alternative treatments such as hyperbaric oxygen therapy, ozone therapy, nicotine patches and different infusions. These therapies have helped him improve, enabling him to return to work as a coach for his fellow gymnasts. However, as of now, he has not resumed his training as a college gymnast. 

This is only part one of Noah’s story focusing on his health developments, thanks to the treatments he was fortunate enough to access. Stay tuned for next month's episode, where we will discuss how COVID affected his ability to train as an elite athlete and forced him to medically retire at such a young age.  

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team. 

In this special “mini episode” of the COVID Longhaulers Podcast Emerson discusses the preliminary results of the DecodeME study – the largest genetic investigation ever conducted on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

With over 15,000 DNA samples analyzed, the study identified eight key genetic signals associated with ME/CFS, offering the first concrete biological clues to the cause of this long-dismissed disease. Emerson explains what these findings mean, how they validate the lived experience of patients, and why this is such a critical shift in the medical understanding of ME/CFS.

You’ll also learn how the study was designed, why it matters that severely ill, housebound participants were included, and what questions still remain.

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast.

In this episode of the COVID Longhaulers Podcast, Jessie and Emerson take a deep dive into the current global COVID surge – what’s driving it, which variants are spreading, and what you can do to stay safer.

They start by unpacking what a surge actually is, how often they occur, and why COVID waves aren’t just a winter problem. From indoor air and global travel to seasonality and social behavior, they explain the patterns behind the summer rise in cases –  and why this year is no exception.

As testing and reporting continue to decline, they explore how wastewater surveillance has become the most reliable tool we have for tracking COVID’s spread. They also discuss the silence from public health authorities, and what it means that so many governments have normalized high levels of illness, death, and disability.

You’ll also learn what variants actually are (and why the naming is so confusing), how vaccines still offer some protection (but not for long), and why each reinfection carries increased risks – including for Long COVID. The episode introduces the three fast-moving variants behind this summer’s surge – LP.8.1, XFG (Stratus), and NB.1.8.1 (Nimbus) – and looks at what we know so far about their mutations, transmissibility, and immune escape.

Finally Jessie and Emerson wrap up this episode with some evidence based tips and tricks to help you keep yourself safe during this and all future surges! You can find all of these resources on our substack. 

Please let us know if you found this helpful and want more “Surge Alert” episodes, as this is the first of a planned series, covering all surge related topics during the bi-annual COVID surges!

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.

In this episode, Emerson sits down with Stefan (aka Rhand from our Long Covid Awareness Day episode), a cruise director from Belgium whose life was changed by Long COVID after multiple infections – especially his fourth in June 2023.

Before getting sick, Stefan worked three jobs, handled most of his household tasks, and was even writing a fantasy novel. After developing persistent fatigue, he eventually received a Long COVID diagnosis. With little medical guidance, he turned to online communities to better understand his symptoms, which include histamine intolerance, post-exertional malaise (PEM), brain fog, tinnitus, and breathlessness. He started experimenting with lifestyle changes, supplements and therapies, in hope to return to his previous life. 

From neurofeedback therapy and DAO supplements to L-glutamine, reflexology, and even unexpected tools like nicotine, Stefan shares the range of strategies that have helped him regain enough stability to return to work – though only in a limited and carefully managed capacity. Neurofeedback, in particular, played a major role in reducing his brain fog, while dietary changes and supplements helped manage his histamine intolerance and fatigue. 

You can find a written version of this episode with our sources on substack here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.

In this special ME Awareness Month episode, Jessie, Emerson, and Rush speak with Elly, a teacher from Scotland whose life was derailed by a seemingly mild summer cold that she never recovered from. What began as a sore throat and congestion spiraled into migraines, brain fog, and profound exhaustion – ultimately leading to a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Elly shares what it was like to go from living a full, active life to suddenly being unable to work, socialize, or even do everyday tasks. She talks about the slow, frustrating road to diagnosis, the daily reality of living with symptoms like post-exertional malaise (PEM), and how she eventually found small but real improvements through deep rest, pacing, and major lifestyle changes.

We also talk about the stigma around invisible illnesses, the emotional toll of not being believed, and how Elly coped with years of isolation. While her story is deeply personal, it highlights a much broader issue – especially now, as more people develop post-viral conditions after COVID – revealing how research still lags far behind the scale of the suffering.

You can find a written version of this episode with our sources on substack, here. 

The transcript is available here. 

And you can view our glossary here. 

If you liked this episode, we hope you will click subscribe so that you don’t miss any of our future episodes. 

You can join our discord server here and if you would like to be a guest on our podcast in the future, you can apply here. 

Find all our other links here.

Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. 

The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.