Today, August 8th, is Severe ME Awareness Day. In this special episode, we hear directly from eight people living with severe Myalgic Encephalomyelitis (ME/CFS): Fran, Nevra, Adrienne, Malaika, Niko, Quella, Annika and Annabelle (a 10 year old girl with very severe ME). 

ME/CFS is a complex, chronic, multisystem disease affecting an estimated 17-24 million people worldwide. Its hallmark symptom is post-exertional malaise (PEM), a worsening of symptoms after physical, cognitive, emotional, or sensory exertion that can leave patients significantly worse for days, weeks, or longer. 

Despite affecting millions of people, ME remains one of the most neglected diseases in medicine. There is still no diagnostic biomarker, no approved disease-modifying treatment, and research funding has historically been disproportionately low compared with the illness's prevalence and burden. Around 25% of people with ME are severely affected, meaning they are mostly or completely bed bound and often unable to tolerate light, sound, touch, or movement. Many require full-time care, yet remain largely invisible to society and are frequently failed by healthcare, disability support, and home-care systems.

Our guests describe bedbound routines, constant symptom burden, the loss of independence, creativity, relationships, and any certainty about the future. They speak about the reality of living in dark, silent rooms; the misunderstandings surrounding exertion and "rest"; and the systemic failures that leave many people with severe ME without adequate medical care, disability support, or the assistance they need to survive with dignity.

If you are in a position to help financially, please consider supporting ME/CFS research and organizations working to improve care for people with this disease. Donations to the Open Medicine Foundation, Bateman Horne Center, or the 25% Group can make a real difference in the lives of people with severe ME. 

There is also an urgent need for mutual aid within the severe ME community. People living with severe ME are unable to work and often struggle to afford essential medications, care, support, equipment, and simply to cover everyday living costs. They rely on regular donations just to meet their basic needs. Nevra, who we spoke to for today's episode, depends on such community support. You can support her here. 

Timestamps:

• [00:00] Introduction

• [01:02] What is ME/CFS

• [04:44] Life with severe ME

• [08:22] Experiences of people with severe ME

• [08:51] “ What does a typical day with severe ME look like for you?”

• [14:17] “ what has been the most difficult loss or change caused by very severe ME?”

• [18:53] “ What's something people almost always misunderstand about severe ME?”

• [24:15] “ If everyone listening could understand just one thing about severe ME, what would you want it to be? 

• [28:41] “Severe ME is…?”

• [30:11] Call to action and closing

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.

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

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, Emerson sits down with Mo, a 30-year-old from London, UK, who has been living with Long Covid since 2022. Her Long Covid seems to fit into the ME/CFS and MCAS subtypes of this illness. Mo is also the person behind the “Slowcial Life” where they organise online events for chronically ill and disabled people. 

Before getting sick, Mo lived an intensely active life working across theatres, galleries, and the creative sector while constantly balancing work, socializing, and creative projects. After what initially seemed like a mild COVID infection, they began experiencing post-exertional malaise (PEM), cognitive dysfunction, severe fatigue, and inflammatory symptoms that drastically changed their daily life.

Mo shares their unusual experience of temporarily going into remission before relapsing months later without a clear trigger. We also discuss the challenges of navigating healthcare with Long Covid and ME/CFS, including medical gaslighting, trying to access MCAS treatment, and the exhausting “dance” many patients feel forced to play with doctors in order to be taken seriously.

The conversation also explores identity, creativity, and joy while living with chronic illness. Mo talks about founding The Slowcial Life, an accessible creative community for disabled and chronically ill people focused on connection, silliness, and making space for fun alongside survival. 

This episode is a thoughtful and honest conversation about chronic illness, resilience, and the importance of creativity, community, and finding joy while living with significant limitations.

This month, Mo and Emerson would like to highlight Nafas’ fundraiser. Nafas is a queer, disabled illustrator and poet of color living in Berlin with very severe ME/CFS, Long Covid, and other comorbidities. They are currently bedbound and rely on personal assistants for daily care. After being denied adequate state support, their care is now being sustained through community donations. If you’re able to, please consider supporting Nafas through their Ko-fi or Etsy shop, where you can purchase their artwork or subscribe to a membership. 

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.

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

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, Emerson and Jessie continue Eddie’s story. After previously discussing the profound impact of illness on their life in part one, we now follow Eddie through a period of crash, experimentation with new treatments, and important life changes. 

Following the French classes, Eddie experienced a significant health crash with worsened pain, mobility issues, and PEM before slowly stabilising again. During this time, they began experimenting with several treatments, including low-dose tirzepatide (a GLP-1/GIP receptor agonist), nicotine patches, and propranolol for POTS symptoms. While not curative, Eddie reports improvements in pain, cognitive function, and the severity of post-exertional crashes, alongside side effects that require ongoing management.

Beyond treatment, Eddie shares major life updates, including finally receiving permanent residency in Canada. This allows them to access public healthcare and support services after years of medical precarity. They also reflect on rebuilding small parts of daily life, from creative hobbies to simplified routines.

Sadly in the time since recording, Eddie’s health has unfortunately worsened again, underscoring the unpredictable and relapsing nature of Long COVID.

As May is both Ehlers-Danlos Syndrome (EDS) and Myalgic Encephalomyelitis (ME or ME/CFS) Awareness Month, we would like to highlight two different charities. The Ehlers Danlos Society is a global organization dedicated to advancing and accelerating research and education in EDS and hypermobility spectrum disorders (HSD). ME Action builds awareness and power to achieve effective and well-funded research, treatment, care, and support for all people with ME. We would appreciate it if you could donate to either charity.

Timestamps:

• [00:00] Introduction

• [01:17] Crash post French classes

• [03:19] Use of tirzepatide (a GLP-1/GIP receptor agonist)

• [15:08] Use of nicotine patches

• [18:20] Use of propranolol for POTS

• [19:23] Permanent residency 

• [21:26] Rebuilding self care and finding joy 

• [27:47] Update and closing 

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.

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

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, Emerson and Jessie speak with Eddie, a 30-year-old living in Montreal, Canada, who has been navigating Long COVID for the past four years. Before getting sick, Eddie lived a fast-paced, highly active life. After two COVID infections in early 2022, their life changed drastically and they now live with severe fatigue, post-exertional malaise (PEM), dysautonomia/POTS, chronic pain, migraines, and suspected MCAS, which has left them largely housebound.

Eddie shares what it’s like to manage daily life with such a limited energy envelope, where even sitting upright for two hours can trigger PEM that lasts for over a week. We also dive into the added challenges of being an immigrant with Long COVID. Eddie opens up about navigating Quebec’s healthcare system without access to public insurance, the barriers created by language, and the toll of going years without any real medical care.

In an effort to build a more stable future, Eddie enrolled in full-time French classes. They walk us through what that experience looks like, the impact it has on their health, and the long-term goals they are working towards, which would help them regain some more autonomy and financial stability. 

This is only part one of Eddie’s story. Stay tuned for next month’s episode where we will check in with Eddie and see how they are doing now that they have completed the French language classes. 

This month, we are highlighting an urgent mutual aid fundraiser for an immigrant couple living in Montreal with severe Long COVID. Their landlord is beginning construction in May, which puts their health at serious risk and could send them back to being completely bedbound. They urgently need to relocate but are facing significant financial barriers. If you are able to contribute, even a small amount, it can make a meaningful difference. You can donate to their fundraiser here. 

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.

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

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 sit down with five guests to discuss what their daily lives look like with Long COVID – across different ages, life stages, and circumstances.

Aliza has been living with Long COVID since she was 12. Despite severe fatigue and POTS, she continues attending high school with accommodations while navigating the loss of activities she once loved and the social challenges of growing up with a chronic illness [00:01:19].

Libby is a university professor living with dysautonomia and neurological symptoms. Through strict pacing and careful planning, she continues working full time while redefining what joy and rest look like in her life [00:15:23].

Eddie spends most of their days conserving energy while managing severe fatigue and PEM. They are enrolled in an intensive language program, which has negatively affected their baseline and caused rolling PEM and longlasting migraines [00:32:27].

Celeste developed Long COVID while pursuing a master’s degree in neuroscience and was forced to leave the program as their health declined. They now live with their parents and share how the illness changed their daily life and the future they had imagined for themselves [00:49:14].

Beth has been living with Long COVID since 2020 while raising four children and continuing to work to maintain health insurance. She shares the challenges of parenting with severe illness and the importance of being present even on the hardest days [01:03:14].

Millions of people worldwide are living with Long COVID, yet research and support systems remain severely underfunded. Many longhaulers lose their jobs, financial stability, or careers, and disability benefits are often difficult to access or insufficient to live on. As a result, some people are forced to push through work or school even when it worsens their health.

Donations to Long COVID research and advocacy organizations help advance urgently needed medical research and improve support for those living with this condition. You can find a list of organisations to support here. We also encourage listeners to support mutual aid and community fundraisers whenever possible, as many longhaulers rely on this support to cover basic needs.

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.

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

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 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.