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.

In this episode of the COVID Longhaulers Podcast, Rush and Emerson take a deep dive into the lesser-known but deeply concerning reality of the invisible damage caused by COVID-19 infections – even in people who seem to recover fully from a mild case.

Based on emerging research and their personal experiences, Rush and Emerson look at how the virus infiltrates the body, spreads through multiple organ systems, and leaves behind silent, often permanent impacts. They discuss the mechanisms of this damage – viral persistence and chronic inflammation caused by SARS-CoV-2 – which explain the wide range of serious health effects that can follow even mild infections, including cognitive decline, immune system disruption, cardiovascular issues, reproductive problems, and a growing concern around increased cancer risk.

Whether you're navigating life with Long Covid or simply trying to make sense of the long-term risks, this conversation offers important insights into why it’s still necessary to take COVID precautions seriously. Because as researcher David Putrino said: “There’s no such thing as a COVID infection without consequence.”

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 special episode of the COVID Longhaulers Podcast, Emerson and Jessie mark Long Covid Awareness Day by diving deep into the realities of living with Long Covid five years into the pandemic. They share powerful insights from their recent community survey, exploring the challenges of diagnosis, access to care, work and school disruptions, financial struggles, and the toll on social lives. Featuring personal stories and interviews, this episode is a call to action for recognition, support, and advocacy for longhaulers everywhere.

To explore the full survey results, research links, and the episode transcript, check out our latest Substack post here. 

And you can view our guide on how to take action today 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 of the COVID Longhaulers Podcast, we sit down with Matt, an essential worker whose life was turned upside down after his first Covid-19 infection in December 2021. Matt shares his harrowing journey with Long Covid, from stroke-like symptoms, chronic headaches and severe GI-symptoms, to navigating dismissive healthcare systems and the mental health challenges of living with a misunderstood condition.  

Through his story, we explore the realities of working in unsafe environments during the pandemic, the struggle to find effective treatments, and the emotional toll of maintaining connections while battling an invisible illness. 

Read more about Matt's story on our substack.

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

To join the discord server, you can do so with this link.

Find all our other links on our linktree.

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.  

The holiday season can be rather stressful for COVID long haulers, especially for those dealing with severely debilitating symptoms. There is quite a bit of pressure to conform to social norms by dropping all COVID precautions while participating in holiday gatherings. This pressure often comes from well-meaning family and friends who don’t understand the risks or the physical toll that Long Covid takes. For many longhaulers, the festive season becomes a delicate balancing act - managing symptoms, protecting their health, and navigating social dynamics - all while trying to preserve some sense of joy and connection.  

In our latest podcast episode, Jessie and Emerson dive into these challenges and share practical strategies for making the holidays safer and more manageable. From tips on pacing and boundary-setting to communication strategies and alternative celebration ideas, we’ve got you covered. Whether you’re a long hauler or someone who wants to support a loved one better, this conversation is packed with insights to help you navigate this tricky time of year with compassion and confidence. 

Find a detailed guide on how to survive the holiday season, based on this episode (and including all of our sources and web links for further reading) on our substack: https://open.substack.com/pub/covidlonghaulerspodcast/p/a-guide-to-surviving-the-holiday?r=4uxv0i&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true 

If you are looking for present inspiration and want to be mindful of where you spend your money this year, we have compiled a “disability wish list”. The first is a collection of disabled owned small businesses, the second is a list of presents that can support or bring comfort to disabled people:  https://docs.google.com/spreadsheets/d/17LDCCN4jmDuBIdf0GJtvt7iphLo8ENTLGMNVD1NBv1w/edit?usp=sharing

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

We’re still working on the Covid Longhaulers website and will post on social media when it’s live. For now, you can find all the promised resources from this episode on our substack: https://covidlonghaulerspodcast.substack.com/

To join our discord server, you can do so with this link: https://discord.gg/q4t6MUQ9Ah 

You can also find all of our links here: https://linktr.ee/covidlonghaulerspodcast 

And contact us via email with questions, concerns or feedback: [email protected] 

Medical Disclaimer: 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. 

We, from the COVID Longhaulers Podcast wish all of you a wonderful holiday season filled with joy, contentment, and as little PEM-crashes and flares as possible! We look forward to seeing you in 2025!

To join the discord server, you can do so with this link: https://discord.gg/q4t6MUQ9Ah

You can also find us on instagram: https://www.instagram.com/covidlonghaulerspodcast?igsh=bGZlaW44cmJmcnlj&utm_source=qr

Medical Disclaimer: 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.