Patrick Ussher, author of Understanding ME/CFS and Strategies for Healing

Patrick Ussher, author of Understanding ME/CFS and Strategies for Healing

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
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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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E189: Functional Medicine Nutrition with Megan Barnett

E189: Functional Medicine Nutrition with Megan Barnett

This is a conversation between Jill Brook and Megan Barnett discussing the relationship between nutrition, gut health, and complex health conditions like POTS and mast cell disorders. They delve into topics like food sensitivities, the importance of micronutrients, and the role of functional medicine in managing these conditions.  Megan's website is: https://bioloungepdx.com You can read the transcript for this episode here: http://tinyurl.com/potscast189 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 Jan 202449min

E188: POTS Diary with Erica from California, an actress and dancer

E188: POTS Diary with Erica from California, an actress and dancer

Erica really can't remember life without POTS symptoms and anxiety was blamed for many years. She currently attends school and lives bicoastally as she pursues a career as an actress and dancer. Her diagnosis brought relief, and learning how to control her symptoms have helped her follow her dreams. You can read the transcript for this episode here: http://tinyurl.com/potscast188 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.

20 Jan 202427min

E187: Dr. Anjali Agarwal, Consulting Physiotherapist and Awareness Beacon in India

E187: Dr. Anjali Agarwal, Consulting Physiotherapist and Awareness Beacon in India

Dr. Anjali Agarwal - consulting physiotherapist trained in UK, located in India, and consulting via telemed around the world - is a wealth of information on POTS and related conditions, describing how "everything is connected", which also presents many treatment opportunities.  She shares numerous lifestyle strategies to manage POTS/dysautonomia, MCAS, hypermobility and related conditions, and she also shares her international perspective. You can follow Dr. Anjali on Twitter, Instagram, or Facebook. You can read the transcript for this episode here: http://tinyurl.com/potscast187 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 Jan 202442min

E186:Behind the Scenes of The Triad Film on POTS/MCAS/hypermobility:  A Crossover Episode

E186:Behind the Scenes of The Triad Film on POTS/MCAS/hypermobility: A Crossover Episode

We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of dysautonomia/POTS, MCAS and hypermobility spectrum disorders.  We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film.  This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein.  You can learn more about the documentary at MCASfund.org. Chapters 00:00 Introduction 00:37 Creating Awareness and Increasing Treatment Options 03:09 The Birth of the Documentary Project 05:20 Filming in New York 07:19 Filming in St. Louis 10:32 The Motivation to Work with Complex Patients 15:49 The Journey of Recognizing MCAS 17:34 The Impact of MCAS Treatment 21:00 Personal Experiences and Incorporating MCAS Treatment 22:42 The Need for an Educational Library 25:29 The Challenge of Condensing Information 26:21 Describing MCAS in Sound Bites 31:10 The Importance of Raising Awareness 34:42 Growth and Development Abnormalities in MCAS 40:03 Main Points about Hypermobility Syndromes and Dysautonomia 44:48 Partnership with LDN Research Trust 51:47 Final Words and Call for Support 54:26 Recognition and Treatment of Unrecognized Patients 55:44 Importance of Learning and Trying 56:13 Gratitude for Dedicated Doctors 56:47 Closing Remarks and Resources      You can learn more about the physicians in this episode at: https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella

11 Jan 202453min

E185: POTS Diary with POTSpouse Tim and Leah

E185: POTS Diary with POTSpouse Tim and Leah

Despite Leah being largely bedbound, Tim and Leah's relationship is as strong as ever. How do they balance illness, household chores, and raising their children? Find out in this heartwarming episode. You can read the transcript for this episode here: http://tinyurl.com/potscast185 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.

6 Jan 202450min

E184:  Breast Implant Illness and MCAS with Breast Surgeon Eva Nagy, MD as part of the Mast Cell Matters Series

E184: Breast Implant Illness and MCAS with Breast Surgeon Eva Nagy, MD as part of the Mast Cell Matters Series

Dr. Tania Dempsey interviews Dr. Eva Nagy, a breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS).  Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms. You can learn more about Dr. Nagy and her practice here. You can read the transcript for this episode here: http://tinyurl.com/potscast184 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 Jan 20241h 14min

E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook

E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook

In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiments and misadventures in her own POTS journey. You can read the transcript for this episode here: http://tinyurl.com/potscast183 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 Dec 202327min

E182: Diary with Quinton, a fitness enthusiast and Long COVID POTS patient

E182: Diary with Quinton, a fitness enthusiast and Long COVID POTS patient

Quinton loves to work out and research Long COVID. About two weeks after recovering from a mild COVID infection, he developed POTS and found himself nearly bedridden. He has slowly worked his way back toward being functional, although he still has significant limitations. You can read the transcript for this episode here: http://tinyurl.com/potscast182 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 Dec 202336min

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