E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason
The POTScast20 Dec 2022

E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason

Dr. Leonard Jason, world renowned father of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research, shares his very personal story with this illness along with what he has learned in his 30+ years of ME/CFS research. The energy envelope, yo-yo effect, prospective studies looking for biological markers of vulnerability, long COVID and so much more is discussed. Many in the POTS community also suffer from ME/CFS. Do you recognize yourself in this episode?

Learn more about Dr. Jason's work.

You can read the transcript for this episode here: https://tinyurl.com/potscast104

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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.

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E205: Dr. Julie Maamari on perioperative considerations for complex patients

E205: Dr. Julie Maamari on perioperative considerations for complex patients

Dr. Julie Hubbard Maamari is a Perioperative Clinical Pharmacy Specialist who helps patients before, during and after surgery by making sure they get the best medications for their needs.  She has helped many complex patients, including those with POTS, MCAS and other hypersensitive or allergic conditions, and she has authored peer-reviewed articles.  Dr. Maamari discusses what patients and their doctors can do to prevent mast cell reactions and have the safest, most comfortable outcomes.  The free patient guide by The Mast Cell Disease Society, with worksheets for emergency room response plan, list of medications to favor or avoid with MCAS, and surgical medication plan can be found here.   Dr. Hubbard Maamari's published article on perioperative consideration in patients with MCAS 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 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.

7 Maj 202434min

E204: Maddie can walk again!  A POTS Diary follow-up

E204: Maddie can walk again! A POTS Diary follow-up

In this episode we check in on Maddie from episode 83, and hear how she is doing, including how she regained the ability to walk again! You can read the transcript for this episode here: https://tinyurl.com/potscast204 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.

30 Apr 202423min

E203:Humor in Chronic Illness with DoodleThru Creators Mike & Jill Brook

E203:Humor in Chronic Illness with DoodleThru Creators Mike & Jill Brook

Sometimes we have to laugh so we don't cry.  In this episode, cartoonists and married couple Mike and Jill Brook describe what made them create DoodleThru.com, how it helped them cope, and remark at the endless supply of absurdities that are available to chronic illness humorists. You can see their cartoons at https://doodlethru.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.

23 Apr 202431min

E202: Dr. Theo Theoharides on mast cells driving dysautonomia and much more - Mast Cell Matters

E202: Dr. Theo Theoharides on mast cells driving dysautonomia and much more - Mast Cell Matters

Dr. Theoharides is among the world's top mast cell researchers and speaks with Dr. Dempsey about his recent article reviewing how mast cells may drive dysautonomia and vice verse.  They also cover a range of topics from mast cells' diversity to their role in autism, most effective mast cell stabilizers and much more.  This episode is packed with advanced mast cell information. Dr. Theoharides has a website here and his supplements can be found here.  You can learn more about Dr. Dempsey and her practice 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.

16 Apr 20241h 2min

E201:Allie

E201:Allie

In this episode we meet Allie, a student at Purdue University who, since getting POTS, has started introducing herself to one new stranger per day.  How cool is that?! 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.

9 Apr 202432min

E200: Dr. Leticia Soares, PhD on female reproductive health concerns associated with long COVID, POTS, EDS, ME/CFS

E200: Dr. Leticia Soares, PhD on female reproductive health concerns associated with long COVID, POTS, EDS, ME/CFS

Dr. Leticia Soares is a research biologist who, before COVID, focused on infectious disease in birds.  Now she serves on the leadership team of the Patient-Led Research Collective, conducting and publishing research to help improve treatment for people with Long COVID. Dr. Soares recently published a review article about female reproductive health issues associated with long COVID, ME/CFS, POTS, hEDS, and in this episode she discusses the main findings, challenges, some tips for fellow patients, and future research priorities.  You can follow Dr. Soares at @leticiasaurus on X. You can read the transcript for this episode here: https://tinyurl.com/potscast200 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.

2 Apr 202435min

199:  Listener Q&A with Dr. Tania Dempsey — Mast Cell Matters

199: Listener Q&A with Dr. Tania Dempsey — Mast Cell Matters

Dr. Dempsey answers questions about MCAS and depression/anxiety/fatigue/brain fog; physical triggers; Kounis Syndrome; whether it's worth it to allow "small" flares in the name of pizza or other small joys; treatments such as stenting for venous compression; how long to try each antihistamine; and much more. More information about Dr. Tania Dempsey can be found at 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 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.

26 Mars 202450min

E198:POTS Diaries with Arianna from Indiana

E198:POTS Diaries with Arianna from Indiana

Arianna was an athlete until POTS and has now developed a large following as a social media influencer.  She's sharing her POTS journey with her audience, too!  You can follow her here on TikTok or  follow her here on Instagram. You can read the transcript for this episode here: https://tinyurl.com/potscast198 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.

19 Mars 202441min

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