The POTScast

Dr. Jennifer Curtin is Medical Director of the RTHM clinic and former complex chronic illness patient herself, after having ME/CFS while in medical school.  Now her team has created the RTHM intelligence platform which uses HIPAA-compliant artificial intelligence and other technology to provide guidance and care for people with Long COVID, ME/CFS, MCAS, POTS, hEDS and related conditions.  In this episode she discusses the features, purpose, possibilities and how this free platform can help improve access to answers, insights, testing and treatment for patients with these complex conditions.  if you would like to try the platform, it is free and 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 info@standinguptopots.org! Find out more about Standimg 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.

Jace had hEDS and POTS for years before it was diagnosed and then had to wait MORE years to start getting any treatment, but in the meantime graduated college, got an advanced degree, worked on state and federal health policy, made art and much more.  Hear Jace's advice and words of wisdom as someone who has expertise when it comes to ADA and accommodations. 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 info@standinguptopots.org! 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.

Brianne Dressen co-founded REACT19 to help support people with life-altering COVID-19 vaccine injuries after being injured herself in one of the original clinical trials, and then learning the hard way that little was available in terms of answers, research, treatments or support.  Now she oversees the science-based non-profit React19, which has created a provider network, support groups, research collaborations, lobbying efforts, and a grant program to help pay for medical bills of injured patients. The mentioned Yale studies are: 1. Comparative Analysis of Long COVID and Post-Vaccination Syndrome: A Cross-Sectional Study of Clinica Symptoms and Machine Learning-Based Differentiation 2. Immunological and Immunogenic Signatures Associated with Chronic Illness after COVID 19 Vaccination (Dr. Been's presentation explaining the findings is here). 3. Post-Vaccination Syndrome: A Descriptive Analysis of Reported Symptoms and Patient Experiences after COVID-19 Vaccination The book about Brianne is here. Brianne's documentary film is here. React19.org's YouTube channel with more educational videos by Dr. Been and more is 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 info@standinguptopots.org! 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.

This is a not-to-be-missed conversation for anyone interested in brain inflammation.  Dr. Eboni Cornish, M.D. is Associate Medical Director at Amen Clinics, Fellow and Treasurer of the Board for the International Lyme and Associated Diseases Society (ILADS). With research training at the National Institutes of Health as a Howard Hughes Medical Fellow, she is nationally recognized for her evidence-based work in neuroinflammation, autism, chronic toxicity, and complex chronic illnesses, including autoimmune disease, Lyme, PANS/PANDAS, mold illness, CIRS, and long COVID among others. At Amen Clinics, she integrates SPECT brain imaging with advanced biomarker testing to uncover root-cause brain imbalances and has created the Amen Clinics 2-Week Neurointensive Program for complex neuroimmune disorders. A sought-after speaker and educator, Dr. Cornish is dedicated to advancing brain and body longevity while translating complex science into practical, patient-centered strategies. In this episode she and Dr. Dempsey discuss neuroinflammation, the role of limbic system, gut imbalances, chronic infections and MCAS. Dr. Dempsey's website is 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 info@standinguptopots.org! 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.

Our 12th annual 5k/2k took place virtually and at Wittenberg University in Springfield Ohio and raises funds for research to help today's struggling POTS patients.  We interviewed several participants while they were waiting for the event to begin and got a chance to find out what brings them to the event, why they want to raise awareness of POTS and more. 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 info@standinguptopots.org! 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. Groysman is founder of the COVID Institute, where they treat POTS/dysautonomia, MCAS, ME/CFS, long COVID, and are reporting good outcomes with evidence-based treatments that are relatively novel in the U.S., such as stellate ganglion block, Epipharyngeal Abrasive Therapy (EAT), vagal nerve stimulation and more.  In this episode Dr. Groysman describes his approach, the 6 main underlying mechanisms he sees at work in these conditions, novel treatments he is finding effective, and what patients can expect at his clinic.  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 info@standinguptopots.org! 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. Jill Krapf is a Board-Certified OB/GYN who specializes in genitopelvic pain and skin conditions, is founder of the Center for Vulvovaginal Disorders and co-author of the book When Sex Hurts: Understanding and Healing Pelvic Pain.  She is a wealth of knowledge and with Dr. Dempsey they discuss the mechanisms behind these disorders, treatments, plus their findings about how mast cells may be involved.   Dr. Dempsey's website is 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 info@standinguptopots.org! 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.

Tristan was an avid hiker, skate boarder and EMT-in-training when his world suddenly started spinning. Although his doctor diagnosed POTS and referred him to a top specialist, he has been waiting two years for that appointment.  In the meantime he deals with a lot of symptoms (e.g., starting each day vomiting) and is unable to work, however he remains upbeat and even shares his successful chronic illness reference on Tinder. 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 info@standinguptopots.org! 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. Kendal Stewart, a former skull-base neurosurgeon turned neuroimmune specialist, dives into the complexities of POTS, especially the hypo-adrenergic variant linked to specific genetic mutations. He emphasizes the importance of genetic testing and nutrigenomics in tailoring treatments, discussing innovative therapies like exosomes and peptides. Dr. Stewart also explores the connection between chronic inflammation, immune modulation, and the role of CBD, providing insight into how these approaches can help manage symptoms effectively.

Patrick Ussher is an author, advocate, educator and patient himself.  His book Understanding ME/CFS and Strategies for Healing explains current research and theory about a unifying explanation for ME/CFS and what that means for treatment strategies.  He explains the Mitodicure initiative to actually cure ME/CFS (pending funding), and also discusses some experimental (**i.e., not recommended:  consult YOUR doctor about what's right for you**) treatments that he has tried, including HELP Apheresis, HBOT (hyperbaric oxygen therapy), a carnivore diet and more. He also shares why he wrote a book about "psychogenic drinking" that -- among POTS and ME/CFS patients -- may not be psychogenic after all. Patrick's website is here. His YouTube channel is here. You can follow him here. To put your name into the hat for the book giveaway, please follow this link https://patrickscribe80.gumroad.com/l/jrfbq There you will be able to download a free sample from the book by inputting your email. Under ’name a fair price’, just input ‘0’ to get the sample for free.  This will also sign you up to Patrick’s newsletter but, if you would rather not subscribe to this, just indicate this clearly in the ’newsletter opt-out’ box. Three email addresses will be chosen at random two weeks after the podcast’s release date and winners will be contacted to arrange delivery of the book. You can also use the contact form on Patrick’s website and let him know you are entering the draw, if preferred. 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 info@standinguptopots.org! 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.