The Understanding ME/CFS Podcast

In this interview, I talk to Prof Klaus With, the man trying to create the world's first approved medication for ME/CFS & Long Covid (Mitodicure). 🧠 This 45-minute deep dive explores the groundbreaking research that led to the current development efforts of Mitodicure and Prof. Wirth’s unifying model of ME/CFS — created in collaboration with Prof. Carmen Scheibenbogen. We cover: 🔹 How Mitodicure is designed to heal the illness and not just suppress symptoms 🔹 Why it could significantly raise the PEM/crash threshold, improving quality of life but also allowing much deeper healing to occur (as PEM heightens and intensifies the illness) 🔹 What a patient might actually feel when taking the drug 🔹 Why drug-development-style research is vital to accelerate our understanding of ME/CFS pathophysiology 🔹 How the mystery of low blood volume in ME/CFS can be explained 🔹 How the Wirth and Scheibenbogen model accounts for muscle fibre necrosis during PEM This may be one of the most hopeful developments the ME/CFS and Long Covid communities have seen in years. 🙏 Please watch, share widely, and help raise awareness. The more visibility Mitodicure receives, the greater the chance of attracting investors for clinical trials — and, potentially, the possible breakthrough millions have been waiting for. To keep up to date with Prof Wirth's work, follow the Mitodicure website: www.mitodicure.com  More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher        #MECFS #CureLongCovid #CureMECFS #Research #Medication #Mitodicure Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

In today's episode I talk to Ray about his story with ME/CFS and serious other health problems, including paralysis from motor axon neuropathy. Initially sick after exposure to a nerve agent, Ray has struggled with debilitating health problems for almost two decades. But how does he stay positive? How does he still try to take personal responsibility for his health? And what message does he have for the ME/CFS community?  More about Ray Crowninshield YouTube Channel - https://www.youtube.com/@truemecfsuncensored1022 More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher    #LongCovid #MECFS #Mindset #Positivity #   Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

Fleury Simons was severely ill with Long Covid for nearly three years — and is now fully recovered. In this interview, she shares the treatments and strategies that changed her life. After struggling with debilitating symptoms and little hope of improvement, Fleury travelled to the Aviv Clinics in Florida, where she completed 60 sessions of medical-grade hyperbaric oxygen therapy (HBOT). She explains how HBOT helped both her body and brain to recover, the role neuroplasticity and mindset work played in her healing, and the additional tools that supported her along the way. More about Fleury:  https://fleurysimons.com/ https://www.instagram.com/mylongcovidmission/ More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher    #HBOT #MECFS #Hyperbaric #LongCovid #Recovery #Brainretraining    Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

From being bedridden to running 5K twice a week —Prof Matthew Robinson’s story shows what recovery from Long Covid, ME/CFS, and POTS can look like. In this interview, Matthew shares how 60 sessions of medical-grade hyperbaric oxygen therapy (HBOT) at Aviv Clinics in Florida transformed his health. Once unable to function for long periods, he is now back to traveling internationally and working as a Professor of Criminal Justice. Alongside HBOT, Matthew also credits part of his recovery to three medications: midodrine, low-dose Abilify, and low-dose Naltrexone (LDN). More about Matthew His ME/CFS & Long Covid Book - https://www.amazon.com/Long-Haul-Four-Year-Battle-Beat-Long-COVID-ebook/dp/B0D6SVM3S1  More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher    #HBOT #MECFS #LongCovid #Recovery #Hyperbaric #LDN   Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

In the third episode of the Understanding ME/CFS podcast, I talk to Sarah Warde about her experience of living with ME/CFS. Sarah's has taken an inspiring approach to managing her illness for over two decades, readjusting her life and mindset to still try to find joy, despite having ME/CFS. She is also an author about an ME/CFS book (link below), gives regular talks to IMET (Irish ME Trust) and has been part of the European ME Alliance.    More about Sarah Her ME/CFS book - https://a.co/d/f5lC5g3 Irish ME Trust - www.imet.ie  More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher  Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

In the second episode of the Understanding ME/CFS podcast, I talk to Steve, an ME/CFS & Long Covid patient, who travelled to a German dialysis centre in order to have HELP apheresis (for microclots) and immunoadsorption (for autoantibodies). Steve shares his (initially positive but overall disappointing experience) with these therapies, as well as more about his overall journey.  More about your host, Patrick Ussher  For my personal website, writings/talks, YouTube channel, Understanding ME/CFS book, social media, etc, please follow this link: https://linktr.ee/patrickussher  #MECFS #LongCovid #ChronicIllness #Research #Autoimmunity #Microclots Intro music: The Path (piano & strings) by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**

My story with seven years of ME/CFS, what has helped me so far, my advocacy work, ME/CFS books and plans for this podcast.    All my links: https://linktr.ee/patrickussher All music by Patrick Ussher **Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**