Welcome to A Friend for the Long Haul - A Long Covid Podcast! This is the last season 4 episode. I'll be taking a break for a few weeks. Season 5 is going to be about friendship, sex, and relationships and I've already lined up a lot of coaches and therapists who have long covid so we can tap their brains and get some insights. I'm so excited about it!

For our season finale, I brought together two lovely people who are actively changing how medicine and research treat chronic illness: Dr. Wes Ely and Dr. Julia Moore Vogel. Sadly, we did have some technical issues and I don't have any video for Dr. Julia, and only got 15 of the 30 minutes of Dr. Ely's audio. Nevertheless, we persist.

Dr. Ely joined me first to talk about whole-person care, what he learned from decades in the ICU, and his work leading the REVERSE-LC trial.

Then, Dr Julia and I dive into what it means to be both a scientist leading research at Scripps, specifically studying repurposed tirzepatide in the Long COVID Treatment Trial-Tirzepatide (LoCITT-T) trial, and someone navigating Long COVID in real time. She shared something early in our talk that hit me deeply: as patients with limited energy, we do not have to spend our precious reserves trying to convince the wrong doctor when we could be looking for the right one.We talk about step counts as real data, pacing without shame, the emotional toll of medical appointments, and the quiet joy of being able to crochet and craft again after years of visual and cognitive limits.

We also get into what it really means to be a "refined badass" when your body is struggling.

Thank you so much for being here with me this season. If this episode brought you comfort or clarity, please share it with a friend who needs to feel seen.

Timestamps:

• 00:00 - The "refined badass" shirt reveal & opening
• 02:03 - Introducing Dr. Julia Moore Vogel & Dr. Wes Ely
• 03:33 - Why human stories matter in medicine & Janet Keith's story
• 06:00 - Julia’s work on the Lockett trial (repurposed tirzepatide)
• 11:53 - Dr. Ely on what doctors miss about Long COVID & infection-associated illness
• 17:57 - Finding the right doctor vs. convincing the wrong one
• 24:35 - What the tirzepatide trial is trying to answer
• 38:17 - How Julia protects her energy and avoids crashes
• 53:28 - Step counts, pacing, and quiet wins
• 56:21 - Crocheting again after years of limits & closing reflections

To support me and my work:

I have an Amazon wishlist that's totally unhinged and has items to help me, our neurospicy and disabled home of 6, and the pup.

Check out my snarky long covid merch shop. I don't keep this money, I filter it into community care and donations to supportive orgs.

Follow me on Instagram, TikTok, or Substack. But the biggest way you can support me listening, sharing, liking, and recommending the podcast. Thank you!

Welcome to a new episode of A Friend for the Long Haul - A Long Covid Podcast! Claire Jones, co-founder of Sista Creatives Rising and creator of Musings of a Black Disabled Elder, is a repeat guest of the pod. She has developed a five-part framework for navigating life's chaos: Clarity, Awareness, Presence, Acceptance, and Gratitude. In this episode, Claire and I talk about what it means to build a life when illness, disability, trauma, grief, and change knock us sideways.

We talk about:

• Learning to live and resist within your capacity, and why your contribution doesn't have to look like anyone else's

• Claire's experience with cancer and how it changed her relationship with self-love, joy, and worthiness

• Why acceptance isn't the same thing as forgiveness

• Grieving the life you thought you would have while still making room for a different kind of joy

• The cognitive cost of constantly trying to manage other people's experience of you

• Living a COVID-conscious life without allowing other people's perceptions to define what makes a life rich or fulfilling

• "Getting ahead of life before life gets ahead of you”

Claire reminds us that life will always contain suffering, disruption, and uncertainty. The goal isn't to become so grounded that nothing ever knocks us off course, it's to develop a way back to ourselves.

Read Sista Creatives Rising and Musings of a Black Disabled Elder on Substack.

A Friend for the Long Haul is a podcast about chronic illness, disability, Long COVID, community, and the messy business of building meaningful lives when our bodies and circumstances don't cooperate with the plans we made.

If this conversation resonates with you, subscribe/follow the podcast and share it with someone who might need it.

#LongCOVID #ChronicIllness #Disability #DisabilityCommunity #ChronicIllnessCommunity #Acceptance #Grief #SelfLove #SistaCreativesRising

Find Claire and Amaranthia's Instagram account for Sista Creatives Rising here: https://www.instagram.com/sistacreativesrising

and their website is: https://www.sistacreativesrising.com/ Follow A Friend for the Long Haul - A Long Covid Podcast on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/

A Friend for the Long Haul is a one disabled woman produced podcast. If you'd like to support my work, you can:

• Check out my shop, full of snarky long covid and chronic illness shirts, mugs, and bags. Any proceeds from the shop go right back to the podcast, or community care/mutual aid.
• I have an Amazon gift registry focused on back to school and things that would help at home. We're a family of 6 neurodivergent and disabled baddies. All 4 kids are heading back to school next week, and any help is always appreciated.
• Venmo me at: afriend4thelonghaul
• Or, just listen, review, and share this podcast!

Thank you!

In this episode of A Friend for the Long Haul - A Long COVID Podcast, I'm joined by Charlie McCone. Charlie is a Long COVID advocate, contributor to The Sick Times, member of the Patient-Led Research Collaborative, someone whose work has become deeply woven into the LC community, and another guest I was convinced was too cool to come on the show.

Charlie and I talk about what happens when your life is changed by an illness that most people still don't understand, if they even think it's real. We explore why Long COVID has been so difficult for the public to grasp, why facts alone don't seem to be enough to create change, and the role storytelling plays in helping communities be seen, believed, and understood.

We also discuss the concept of "hypocognition," which is what happens when society lacks the frameworks to recognize a problem, and how this shows up in the experiences of people living with chronic illness and disability, as well as disability culture, patient-led research, the power of first-person narratives, how communities organize, and what keeps people speaking up when progress feels so very painfully slow. We also chat about Charlie's friendship with Alice Wong, and the lessons he learned from her about advocacy and life.

You don't have to live with Long COVID to understand how it feels to try to find purpose when your life takes an unexpected turn. But if you do have LC, are navigating another chronic illness or disability, you're supporting a loved one, or trying to better understand what millions of people have experienced over the last 6 years, I think we took a really good look at how people telling the truth about what they've lived through is a powerful way to drive change. Charlie, thanks for your work and for joining me!

Find Charlie on Instagram: https://www.instagram.com/loscharlos/

Bravely, on X: https://x.com/loscharlos?lang=en

On Threads: https://www.threads.com/@loscharlos

His amazing piece, Alice Wong showed us DIsability Justice makes our advocacy stronger: https://thesicktimes.org/2026/04/10/alice-wong-showed-us-disability-justice-makes-our-advocacy-stronger/

Find Beth on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/

Treat yourself to some Long COVID merch in my shop and support this podcast and mutual aid: https://www.bonfire.com/store/a-friend-for-the-long-haul/

Read my Substack: https://f4lh.substack.com/