The POTScast

Mel Houser, MD, is a board-certified family physician and the founder and Executive Director of All Brains Belong VT, a nonprofit community health organization pioneering neurodiversity-affirming healthcare.

In this episode, Dr. Houser discusses what healthcare can look like when it is designed for different brains and bodies rather than expecting every patient to communicate, process information, and participate in the same way.

We explore the overlap between neurodivergence and complex chronic illness, including conditions such as POTS, MCAS, ME/CFS, Long COVID, chronic pain, and migraine, and why treating these conditions as interconnected rather than isolated can lead to more effective care.

Dr. Houser also shares practical ways clinicians and healthcare systems can better accommodate neurodivergent patients and explains why belonging and community are important parts of health. We discuss All Brains Belong’s free virtual Brain Club® as well as the organization’s free resources for clinicians, patients, families, employers, and community organizations.

Learn more and explore resources at All Brains Belong:
https://allbrainsbelong.org/ 

Other mentioned resources and links:

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

This episode of the POTScast was recorded before our in-person 5K/2K event to raise funds for POTS research grants. POTS patients and their loved ones spoke with us to give an authentic glimpse of the ups and downs of living with a chronic illness like POTS. We are proud to serve this community, and touched by their stories.  Special thanks to our presenting sponsors, Normalyte, Thrivent, and Mike & Anne Patenaude.  Thanks to our generous donors and participants in these events and other fundraising throughout the year, Standing Up to POTS has funded over $750,000 in research to help today's suffering POTS patients.  You can read more about our funded studies at https://www.standinguptopots.org/research-fund/funded-research-studies

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Dempsey, one of the world's leading experts on MCAS and associated conditions, answers listener questions about exercise as a mast cell trigger, the underlying causes of MCAS, treatments like Xolair, Amlexanox, Ketamine and antihistamines, estrogen replacement, her favorite novel therapies and much more.  If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to [email protected].

Dr. Dempsey's website is https://drtaniadempsey.com/

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Jessica was a kindergarten teacher with three advanced degrees, two young children, a husband, and busy life before COVID, despite having POTS, which she managed with salt, fluids and compression.  But soon after her second COVID shot she experienced a series of new symptoms, diagnoses, and disappointments in the systems she thought would be there to help.  Jessica recounts her (sometimes harrowing) odyssey to get medical help and disability insurance, and shares what she wishes she'd known sooner.  Above all, Jessica wants patients who are fighting the same battles to know they aren't alone.  And she hopes that vaccine injured people will have their stories heard without pre-judgment.

 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

In this episode Dr. Cathy Pederson shares her latest published findings from a POTS patient survey looking at the relationship between POTS triggers -- such as infection, physical trauma, hormonal shift -- and symptom profile/severity.  Her findings, showing that POTS triggered by physical trauma was associated with more severe GI and overall symptom severity, can be downloaded here, in the Journal of Health Science and Education.

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X/Twitter: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

In this episode, Madeline shares her experience of living with POTS, from diagnosis to the daily routines that helped her improve over time. She talks about how exhausting it can be to live with a condition that often feels like a full-time job, and how creating simple systems made her POTS more manageable. That experience led her to build POTSie, a mobile app created to help others reduce the mental load of living with POTS and make daily life a little easier.  You can find her app at https://potsie.io/

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

After successfully treating his own Long COVID, founding the COVID Institute, treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series, Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.”  In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produce very different clinical presentations from patient to patient.

The six primary domains include dysautonomia/POTS, mitochondrial and bioenergetic dysfunction, endothelial and microvascular dysfunction, gut dysbiosis and barrier disruption, mast cell activation/histamine-mediated signaling, and neuroendocrine/hormonal dysregulation. Secondary amplifiers may include persistent immune activation, viral antigen persistence, autoantibody formation, neuroinflammation, sleep-related destabilization, and small fiber neuropathy.

In this episode he answers questions about his mechanism-based model of Long COVID, plus a practical approach to identify mechanism as described in latest publication, The Trigger-Timing Framework for Long COVID:  Using Symptom Triggers and Temporal Patterns to Guide Mechanistic Stratification and Guide Treatment.

 Dr. Groysman also offers an online community for patients to ask questions and have discussions with him (and other members) at https://www.longcovidfamily.com/

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Vindara Health is the new telehealth specialty clinic created by Dr. David Kaufman and Paddy Monahan, to improve access to expert care for patients with the most complex conditions, including POTS, long COVID, ME/CFS, MCAS, autoimmunity, Lyme, fibromyalgia and more.  In this episode they discuss how it works, why they were inspired to create a new model, why they think there is increasing complex chronic illness, why working within the standard medical system is so limiting when treating complex chronic illness, and what research and treatments they are most excited about currently.  They also mention they are hiring providers.

Links to mentioned resources:

Dr. Kaufman's article on the use of low-dose rapamycin for fatigue and post-exertional malaise in ME/CFS

Dr. Kaufman's presentation at Stanford University's Community Symposium on the Molecular Basis of ME/CFS on 9/11/26:  Rebooting the System: mTOR, Autophagy, and Low Dose Rapamycin (link to video will be added when it gets released).

Case report on amlexanox helping a few patients with MCAS.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

In this episode, we explore the legal and civil rights issues surrounding chemical and fragrance intolerance, including what happens when people are unable to safely access hotels, businesses, and other public spaces that use synthetic fragrances in their air systems and cleaning (or other) products.

Our guest is Scott Cole, founder of Cole & Van Note, a law firm with more than 30 years of experience in civil rights, consumer, and class action litigation. Scott and his firm are leading a legal effort challenging the widespread practice of pumping synthetic fragrance into public buildings—an issue that can make these spaces difficult or impossible to access for people with chemical or fragrance sensitivities, including many patients living with conditions such as POTS and MCAS.

In this conversation, Scott explains his firm’s current investigation and litigation against major hotel chains and other businesses using synthetic fragrances, why fragrance accessibility may be a civil rights issue, and what patients and advocates need to know as this area of law develops.

Dr. Tania Dempsey shares how synthetic fragrances can be toxic even to those who don't feel symptoms from them, and how MCAS flares initiated by fragrance exposures may last for weeks or months.  She also shares statistics showing that fragrance intolerance is not rare.

Anyone interested in participating in the law firm's campaign against fragrances can learn more or submit their information here.

Attorney Scott Cole's book, Fallout, can be found here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X/Twitter: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Michelle was a busy mom, business owner and back country adventurer whose life changed dramatically in the 36 hours following her second COVID shot.  After finding little help locally in Canada, she traveled to the US for visits with leading specialists in dysautonomia, MCAS, small fiber neuropathy and more.  She recounts some of the treatments she has had -- including IVIg, EBOO, and even brain surgery -- and challenges encountered.  She ultimately co-founded CANrise19.com, a non-profit to bring support, awareness and fellowship to other patients in her situation.

Michelle will be testifying at the Allison Inquiry.On September 8, 9, 10 and 11, 2026, the Allison Inquiry will be listening to the testimony of Canadians injured by a Covid-19 vaccine. The Inquiry will be broadcast live from Parliament Hill in Ottawa. The Allison Inquiry represents the first time that Canadian lawmakers will be listening to Canadians about their experiences with the Covid-19 vaccines.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
X: https://twitter.com/POTSActivist 

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.