MS-Perspektive - The Multiple Sclerosis Podcast

In this episode, Nele speaks with Dr. Ayush Chandra and Dr. Avinash Chandra about multiple sclerosis in Nepal. They explain why MS is still often diagnosed late, how limited access to MRI, neurologists and treatment affects people in rural and mountainous regions, and why awareness is so important for earlier diagnosis. The conversation also highlights the work of the Multiple Sclerosis Society of Nepal, advocacy for more affordable medication, and the hope for stronger international collaboration to improve MS care in low-resource settings. You can read through the interview here: https://ms-perspektive.com/169-ms-in-nepal Topics covered in this episode: Why MS has long been overlooked in Nepal How common MS appears to be and why reliable data is still limited Typical barriers to diagnosis, including MRI costs and lack of specialists Rural access challenges and the role of geography Treatment options in Nepal, including rituximab and adapted strategies The work and advocacy of the Multiple Sclerosis Society of Nepal Why awareness, education, telemedicine and local research matter Messages of hope for people with MS and their families Resources: Multiple Sclerosis Society of Nepal MS International Federation --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

In this episode, Dr. Isabel Voigt from the MS Center Dresden introduces the MS360° approach, a digital-first hybrid care model designed to make multiple sclerosis care more continuous, proactive, and personalized. She explains why today's MS care can feel fragmented, how important changes may be missed between appointments, and how digital tools such as apps, wearables, patient-reported outcomes, and telemedicine could support earlier detection of disease progression. We also talk about the role of real-world data, artificial intelligence, digital twins, and patient participation in shaping the future of MS care. A special focus is placed on improving access to specialized care for people living outside larger cities. You can read through the interview here: https://ms-perspektive.de/en/168-ms360 Topics covered in this episode: Why MS care often feels fragmented How MS360° connects digital monitoring with in-person care The role of apps, wearables, and telemedicine Earlier detection of disease worsening How real-world data can support research and personalized treatment What artificial intelligence and digital twins mean for people with MS Why patient participation is key The future of connected, equitable MS care Links mentioned and further reading Original MS360° paper in npj Digital Medicine: https://www.nature.com/articles/s41746-026-02461-4 Dr. Isabel Voigt on LinkedIn: https://de.linkedin.com/in/isabel-voigt-77b6b2357 Multiple Sclerosis Living Lab Dresden: <a class="decorated-link" href= "https://msz.uniklinikum-dresden.de/en/zkn/ms-l

In episode #167, Sanam Saeedi shares her perspective on living with MS, fatigue, walking and energy. Diagnosed in 2019, she explains how symptoms such as foot drop, balance issues and fatigue changed her daily life — and why pushing through is not always the best answer. As a neurological movement and fatigue coach, Sanam focuses on awareness, pacing, stabilization, strengthening and tracking. Her message is practical and encouraging: MS requires strategy, not just motivation. By understanding patterns in sleep, stress, nutrition, energy and movement, people with MS can make small, sustainable changes that support confidence and quality of life. Here you can find the complete shortened interview transcript. Topics covered Sanam's diagnosis and personal journey with MS Why MS fatigue and movement are closely connected Foot drop, balance issues and gait changes Why compensation can increase fatigue Fatigue pacing and energy management Small everyday changes for more control Good days, bad days and symptom tracking Rebuilding body trust after setbacks Movement confidence and living well with MS Related episodes and resources mentioned Alan Kalron: movement, balance and training strategies in MS Anthony Feinstein: staying physical, social and cognitive active Isabel Voigt and MS360°: holistic, whole-person MS care More on ms-perspektive.de: fatigue management, pacing, gait, balance, foot drop, body trust and movement confidence What would you like to leave our listeners with today? Sanam Saeedi: Trust the process.</p

What are unseen MS symptoms really like? In this inspiring episode, Hjördís Ýrr Skúladóttir from Iceland shares her personal journey with multiple sclerosis, from diagnosis and burnout to becoming a patient advocate and former Chair of the Icelandic MS Society. Together, we talk about invisible MS symptoms such as fatigue, bladder problems, and emotional exhaustion, while also exploring leadership, healthcare in Iceland, and the power of community support. Hjördís explains how her background in education and policing shaped her resilience and communication skills, and why she believes openness and compassion are essential for living well with MS. Topics discussed: Living with unseen MS symptoms MS fatigue and misconceptions Iceland's healthcare system The role of MS nurses Becoming a patient expert Leadership and advocacy Community support and empowerment Work-life balance with MS Hope for the future of MS care Resources & Links MS-Perspektive Podcast: https://ms-perspektive.com/166-hjoerdis Hjördis website on LinkedIn on Facebook on Instagram Iceland MS Society Icelandic MS Society Oceans of Hope

What does it really mean to live a meaningful life with multiple sclerosis? In this episode, Patti Bevilacqua shares her deeply personal journey after being diagnosed with MS at just 22 years old. Instead of trying to "push through," she chose a different path—one shaped by self-awareness, resilience, and intentional living. Today, Patti is a speaker and advocate for people with invisible challenges. In this conversation, she opens up about identity shifts, career changes, and why MS does not define who she is. 👉 Read the full blog article here: https://ms-perspektive.com/165-patti 🔍 Topics covered in this episode: Patti's MS diagnosis at age 22 Early symptoms and first reactions Letting go of a dream career Living without disease-modifying therapies Navigating uncertainty in professional life Identity shifts and invisible challenges Becoming an advocate and public speaker Mindset, resilience, and purpose Why "MS doesn't define me" Living a meaningful life beyond diagnosis 🔗 Resources & Links: Patti Bevilacqua Website: https://patti-bevilacqua.com Newsletter: https://pattibevilacqua.substack.com LinkedIn: <a class="decorated-link" href= "https://linkedin.com/in/patti-bevilacqua" target="_new" rel= "noopener" data-start="1391" data

The EMSP 2026 Conference in Berlin highlighted how much is currently evolving in multiple sclerosis (MS) – from improved diagnostics and emerging therapies to long-overdue topics like fatigue, PIRA, and menopause. In this episode, I share my personal insights from Day 1 on site and summarize the key developments from Day 2. We explore why the "MS iceberg" is still widely misunderstood, how new approaches like CAR-T and stem cell therapy are shaping the future, and why access to care across Europe remains a major challenge. 👉 Read the full blog article: https://ms-perspektive.de/en/164-emsp 🔎 What we cover in this episode Personal impressions from EMSP 2026 in Berlin Patient stories: MS and NMOSD McDonald Criteria 2024 and improved MS diagnosis The "MS iceberg" and invisible symptoms like fatigue Poster insights: fatigue as a key burden in MS MS Selfie and decision support tools for immunotherapies CAR-T cell therapy and stem cell therapy Menopause and MS PIRA (Progression Independent of Relapse Activity) Access to MS care across Europe 🔗 Mentioned resources & episodes 👉 Barbara Willekens on CAR-T cell therapy 👉 Christoph Heesen on stem cell therapy 👉 Roland Martin on aHSCT 👉 Riley Bove on menopause &

In this episode, I speak with neurologist and researcher Professor Barbara Willekens about one of the most exciting and complex developments in MS research: CAR-T cell therapy. Originally developed for blood cancers, this innovative treatment is now being explored for autoimmune diseases like multiple sclerosis. We discuss how CAR-T therapy works, how it differs from existing MS treatments, and why it may have the potential to "reset" the immune system. At the same time, we take a close look at the current scientific evidence, including early clinical data, safety concerns, and why this therapy is still far from routine clinical use. You'll also learn who might be eligible for current trials and what the future of CAR-T in MS care could look like. You can read the full blog article here: https://ms-perspektive.de/EN/163-car-t-cell-therapy 🧠 What you'll learn in this episode What CAR-T cell therapy is and how it works Why B cells play a key role in MS How CAR-T differs from current MS treatments What "immune reset" means—and why it's still a hypothesis Who might be eligible for CAR-T therapy trials Risks such as cytokine release syndrome and neurotoxicity What we can learn from lupus and cancer research Where clinical trials are currently taking place Why experts are both hopeful and cautious 🔬 Resources & Links Previous episode: MS Brain Health Strategy (Episode 125) Clinical trials database: <a class="decorated-link"

Pain is one of the most common and challenging symptoms of multiple sclerosis (MS). In this episode, neurologist and pain specialist Dr. Camelia Ionescu explains how pain in MS develops—and how a multimodal approach can help manage it effectively. 👉 This episode is based on an interview originally recorded in German (January 2025) and has been translated to make these important insights accessible to an international audience. You'll learn how different types of pain arise, why treatment must be individualized, and how combining medication, physiotherapy, psychological support, and self-management strategies can improve quality of life. 🔎 What you'll learn in this episode What causes pain in multiple sclerosis The difference between nociceptive, neuropathic, and nociplastic pain Which medication options are available How physiotherapy and interdisciplinary care support pain relief Why psychological assessment and therapy are essential How patients can strengthen self-empowerment in everyday life Which complementary and alternative approaches may help When multimodal pain therapy becomes necessary 🌐 Read the full blog article 👉 You can find the full article with all questions and detailed answers here: https://ms-perspektive.de/en/162-pain-relief 🌍 International resources on MS & pain For further information and support, these organizations provide reliable, up-to-date resources: National Multiple Sclerosis Society <li data-section-id="17wgcs5" data-start="1835" data-end="1876"

In this episode, we talk about progressive multiple sclerosis (PMS), including primary progressive MS (PPMS) and secondary progressive MS (SPMS). Neurologist Dr. Thomas Knoll shares insights from over 30 years of clinical experience, focusing on disease mechanisms, current treatment options, and what people living with progressive MS can actively do to maintain their quality of life. 💡 Note: This episode is based on an interview originally recorded in November 2023 and has been translated and adapted for an international audience. A key takeaway: While neurodegeneration is still difficult to treat, an active lifestyle, symptom management, and strong support systems can make a meaningful difference. 👉 Read the full interview (English): https://ms-perspektive.com/161-pms 🧠 Topics covered What defines PPMS and how it differs from other MS types Typical symptoms and disease progression Current treatment options and limitations Role of B-cell therapies (e.g., Ocrelizumab) Importance of early intervention Rehabilitation, physiotherapy, and lifestyle factors How to maintain quality of life with progressive MS Patient support, networks, and resources Future research and treatment perspectives 🔗 Resources & Links Organizations & Support: German Multiple Sclerosis Society (DMSG): https://www.dmsg.de AMSEL (MS patient organization): https://www.amsel.de Multiple Sclerosis International Federation (MSIF): https://www.msi

The EMSP Conference 2026 is one of Europe's most important events for people living with MS, NMOSD, and MOGAD—and you can join online for free. Even though the conference takes place in Berlin this year, onsite participation is already fully booked. But the good news is: you don't have to miss out. From April 24–25, 2026, you can follow all sessions virtually and gain access to the latest insights in diagnosis, treatment, and patient care. This year's focus: 👉 From Diagnosis to Access: Data-Driven Solutions for MS, NMOSD, and MOGAD You'll hear from leading experts, researchers, and patient advocates—including familiar voices from the MS-Perspektive podcast like: Barbara Willekens: https://ms-perspektive.de/en/125-barbara-willekens/ Leda Bresnov: https://ms-perspektive.de/en/82-leda/ A unique opportunity to learn, connect, and feel empowered—no matter where you are. 🧠 Topics Covered in This Episode What makes the EMSP Conference 2026 special Why online participation is a game changer Latest developments in MS, NMOSD, and MOGAD Early diagnosis and new criteria (McDonald 2024) Access to treatment across Europe Patient perspectives and advocacy The role of data, registries, and real-world evidence Why this conference is especially valuable for people affected 🔗 Useful Links & Resources EMSP Conference 2026 (official info & registration): https://eu.eventscloud.com/website/19094/registration/ Barbara Willekens on MS-Perspektive: <a clas

In this episode, we explore multiple sclerosis in Saudi Arabia with neurologist Dr. Yasser Alamri. He shares insights into MS care, treatment access, research developments, and the growing awareness of the disease. You'll learn how early diagnosis and high-efficacy therapies can improve long-term outcomes, why multidisciplinary care is essential, and how stigma is being reduced through education and support programs. This episode offers valuable perspectives for people living with MS, caregivers, and healthcare professionals alike. 🧠 Topics covered in this episode Dr. Alamri's journey into neurology and MS specialization MS prevalence in Saudi Arabia and why numbers are underestimated Evolution of MS awareness among healthcare providers and the public Access to neurologists and MS specialists across regions Multidisciplinary care: the role of nurses, psychologists, and therapists Treatment strategies and early use of high-efficacy therapies Therapy switching and patient-centered decision-making Public perception, stigma, and psychological impact Importance of rehabilitation services in MS care Current MS research and the need for national registries International collaboration and personalized medicine approaches Message of hope: why early treatment makes a difference 🔗 Resources & Links 🌐 You can read a shortened version of the interview here: <a class= "decorated-link" href= "https://ms-perspektive.de/en/159-saudi-arabia" data-start=

This episode explores shared decision making in multiple sclerosis (MS) and why it is essential for patient-centered care. 👉 Note: This is the English version of an interview originally recorded in German in November 2024. You can find the original German episode here: 🔗 https://ms-perspektive.de/278-uli-rueffer/ You can also read the full English article with all insights and resources on my website: 🔗 https://ms-perspektive.de/en/158-rueffer Together with Dr. Jens Ulrich Rüffer, we discuss how patients and doctors can make treatment decisions together on equal footing—and why this leads to better outcomes, higher satisfaction, and more sustainable care. 🧠 What you will learn in this episode What shared decision making (SDM) really means in MS care Why patient empowerment improves treatment outcomes How doctors and patients can communicate more effectively Which tools (e.g. decision aids, coaching) support SDM Why SDM is still not widely implemented How artificial intelligence may support future decision-making Whether patients can (and should) delegate decisions 🌍 Resources & Further Reading Multiple Sclerosis International Federation (MSIF) – global resources on MS, patient empowerment, and access to care European Multiple Sclerosis Platform (EMSP) – European initiatives on patient rights and healthcare quality <a href

In this episode of the MS-Perspektive Podcast, neurologist Dr. Joachim Havla explains the potential of Optical Coherence Tomography (OCT) for monitoring and understanding multiple sclerosis. OCT is a quick, non-invasive eye scan that measures the tiny layers of the retina with micrometer precision. Because the retina is part of the central nervous system, researchers are investigating whether OCT measurements could help detect neurodegeneration and disease activity in MS. In this interview we also discuss the role of optic neuritis and why it is important to distinguish between Multiple Sclerosis, Neuromyelitis Optica Spectrum Disorder (NMOSD) and MOG Antibody Disease (MOGAD). 🎧 Note: This episode is the English adaptation of a German interview. Read the original German article: https://ms-perspektive.de/EN/157-oct Learn more about the research of Dr. Havla's team at the: Havla Lab – Neuro\Vision Topics in this episode Why the eye can reveal changes in the brain How OCT works and what it measures Optic neuritis in MS, NMOSD and MOGAD What retinal thinning may tell us about neurodegeneration Current OCT research and future perspectives for MS care --- See you soon and try t

Sexuality is still a taboo topic for many people with multiple sclerosis (MS), even though sexual dysfunction is a common symptom of the disease. In this episode, I speak with neurologist Dr. Markus Heibel, medical director of a specialized MS clinic in Germany, about why sexual problems occur in MS—and what can help. We discuss the difference between primary, secondary, and tertiary sexual dysfunction, how symptoms like spasticity, pain, medication side effects, or psychological stress can affect intimacy, and which treatment options exist. Dr. Heibel also shares practical strategies from clinical practice—from physiotherapy and psychotherapy to communication within relationships and creative solutions that couples have found helpful. The conversation shows that fulfilling intimacy is still possible with MS—and that talking openly about the topic is often the first and most important step. 👉 Read the full interview and resources on the blog: https://ms-perspektive.com/156-dr-heibel Topics in this episode Why sexual dysfunction in MS is still a taboo topic Primary, secondary, and tertiary sexual dysfunction explained The role of medication, hormones, physiotherapy, and psychotherapy Practical strategies for couples living with MS Why communication and openness are key What people with MS can do themselves to improve intimacy Further resources on sexuality and multiple sclerosis Sexual health is an important part of overall wellbeing, but many people with multiple sclerosis (MS) still find it difficult to talk about intimacy, desire, and sexual dysfunction. Fortunately, several international MS organizations provide reliable information, practical advice, and educational materials about sexuality, relationships, and intimacy with MS. The following resources are good starting points if you would like to learn more or look for further support. Global resources MS International Federation (MSIF) – Relationships and intimacy Overview article on intima

Why does multiple sclerosis progress very differently from person to person? And could your genes help predict your individual MS pathway in the future? In this episode of the MS Perspektive Podcast, I speak with neurologist and researcher Dr. Karim Kreft from the University of Nottingham about his groundbreaking work on genetic subtypes in MS. His research explores whether known MS risk genes may also influence long-term disease progression and response to treatment. Using genetic clustering methods, his team identified three distinct genetic groups of MS patients – with interesting differences in progression and treatment benefit. While this research is not yet ready for clinical use, it offers an exciting glimpse into the future of personalized medicine in MS. What You'll Learn in This Episode How much genetics actually contributes to MS risk What "genetic clustering" means in simple terms Why MS is such a heterogeneous disease The three identified genetic subtypes in MS Why one group benefited significantly more from treatment Whether mild MS patients benefit differently from medication The limitations of real-world data in MS research Why future MS care may move beyond clinical labels When genetic testing might become part of routine care About My Guest Dr. Karim Kreft is a consultant neurologist and Associate Professor in Neurology at the University of Nottingham, UK. His research focuses on understanding the biological mechanisms behind MS progression and improving personalized treatment strategies. A Hopeful Outlook Genetic testing has become dramatically more affordable in recent years. Although validation studies are still needed, this research may one day help predict prognosis and guide treatment decisions more precisely – potentially within the next decade. As always: this episode provides scientific insights but does

How safe are MS therapies? And how do we actually know? In this episode, neurologist Dr. Nora Möhn explains the concept of pharmacovigilance — the continuous monitoring of drug safety from early development through approval and real-world use. This conversation was originally published in September 2023 on the German MS-Perspektive podcast. For this English edition, regulatory references and country-specific details have been carefully adapted to reflect internationally relevant systems and resources. The medical content remains fully up to date. You will learn: What pharmacovigilance means and why it is essential for people with MS How safety data is collected in Phase I–IV clinical trials How rare side effects are detected after market approval How neurologists assess the benefit-risk profile of MS therapies What special considerations apply during pregnancy, in children/adolescents, and in older patients How patients can report suspected side effects in different countries Why ongoing monitoring builds trust and treatment confidence A well-monitored therapy not only slows down MS — it enables long-term safety, confidence, and self-determined living. 🔗 Read the full article here: https://ms-perspektive.de//en/154-pharmacovigilance 🌍 International Pharmacovigilance Reporting Systems If you would like to report suspected side effects, you can contact your national medicines authority. Here are official resources: European Union European Medicines Agency (EMA) – EudraVigilance https://www.adrreports.eu https://www.ema.europa.eu United States FDA MedWatch Program <a class="decorated-link" href="h

In this episode of MS-Perspektive International, host Nele von Horsten speaks with David Walzik, PhD student in exercise science at TU Dortmund University and medical student at the University of Cologne, about exercise immunology and what current research can tell us about immune adaptation through movement. David explains the difference between epidemiological findings and underlying biological mechanisms, and shares results from a recent study comparing high-intensity interval training (HIIT) with moderate-intensity continuous exercise. While both types of exercise mobilized immune cells, high-intensity exercise led to much stronger changes inside the immune cells — with over 1,000 proteins reorganized after just one session. Photo of David Walzik (Copyright: Niklas Joisten, TU Dortmund, Germany) They also discuss what this could mean for people living with multiple sclerosis, why flexibility matters when symptoms fluctuate, and why community and support are key to building sustainable exercise habits. 👉 You can read the full interview on the blog, where all questions and answers are available in detail and easy to follow: https://ms-perspektive.de/en/153-exercise 🧩 Topics covered in this episode What exercise immunology is and why it matters <l

This time I speak with Dr. Ingrid Klingmann about empowering patient voices in medical research and innovation. Dr. Klingmann is one of the initiators of EUPATI, a European initiative dedicated to educating patients about the medicines development process. Drawing on her experience as a physician, researcher, and former cancer patient, she explains why informed patients are essential partners in clinical research. The conversation explores how patient education improves clinical trials, why lay summaries matter, and how digital tools can help patients move from passive recipients to active contributors in healthcare and research. Topics covered in this episode: Dr. Ingrid Klingmann's journey from family physician to medical research Why EUPATI was founded and which gap it fills The benefits of patient involvement for research and industry How patients can influence clinical trial design Why health literacy and education are key to empowerment The future of patient involvement in medical research Resources & Links: EUPATI – European Patients' Academy on Therapeutic Innovation: Home | EUPATI Open Classroom More episodes and blog a

In this episode of the MS Perspektive Podcast, Nele von Horsten speaks with Paola Escamilla Greenham, MS patient advocate and patient experience designer living in Grenoble, France. Paola shares how her life with multiple sclerosis reshaped her priorities and led her toward patient advocacy across Europe. She talks openly about her diagnosis, the emotional shock that followed, and why joy has become her guiding principle in daily life. The conversation explores the importance of community, lived experience in healthcare design, and Paola's vision for involving patients more meaningfully in MedTech and Biotech innovation. We also discuss Paola's journey through the EUPATI program, her work as a business angel, and what empowerment truly means when living with a chronic illness. This episode offers inspiration, honesty, and a strong reminder: living well with MS starts with listening to your body and choosing what brings you joy. 📝 Topics covered in this episode Living with MS between Mexico, France, and Europe Diagnosis, shock, and patient experience Joy, energy, and improvisational theatre Patient advocacy and community support Lived experience in healthcare design <p data-st

Research News with Dr. Boris Kallmann In this episode of the MS Perspective Podcast, we focus on chronic smoldering inflammation in multiple sclerosis (MS) – a process that can drive slow disease progression, even when relapses no longer occur. I speak with Dr. Boris Kallmann, neurologist and MS specialist, about how these subtle changes develop, how they can be recognized in everyday clinical practice, and which treatment options are available today – and may become available in the near future. 👉 You can also read the full interview on my blog, where this episode is available as a written article. ℹ️ Important notes This episode is the English translation of the original German interview. The conversation was translated carefully to preserve medical accuracy and meaning. This episode was supported by Sanofi S.A. The content reflects independent editorial work. 🧠 Topics covered in this episode What chronic smoldering inflammation means in MS Why MS can progress slowly without relapses How neurologists recognize subtle, long-term changes The importance of listening closely to patients' experiences Using digital tools and smartphones to monitor disease progression Realistic therapy goals when progression is present The three key pillars of MS management: lifestyle and physical activity symptom management immunomodulatory therapies New therapeutic approaches and insights from clinical trials BTK inhibitors: how th

What can your mouth tell us about multiple sclerosis? In this episode of the MS-Perspektive Podcast, Professor Dr. Ashutosh Mangalam, immunologist and microbiome researcher at the University of Iowa, shares fascinating insights into the oral microbiome and multiple sclerosis. While most MS research focuses on the gut, this conversation highlights why oral bacteria and their metabolites may also play an important role in inflammation, immune regulation, and disease activity. We talk about what the microbiome is, how the oral microbiome differs in people with MS, and why beneficial bacteria are reduced while potentially harmful ones increase. Professor Mangalam explains the relevance of microbial metabolites such as hypotaurine, discusses whether saliva could become a future biomarker for MS monitoring, and why oral health and regular dental care matter for people living with MS. The episode also explores how combining oral, gut, and blood-based markers could support more personalized MS care in the future. you can read the interview here: https://ms-perspektive.de/EN/149-ashu-mangalam 📌 Topics covered in this episode What the microbiome is and why it matters in MS The role of the oral microbiome in relapsing-remitting MS Dysbiosis: loss of beneficial bacteria and rise of pathogenic species Microbial metabolites and inflammation Saliva as a potential biomarker for MS monitoring Oral health, dental care, and lifestyle factors Personalized MS treatment using microbiome-based markers <p data-start="1708" d

In this episode, Prof. Dr. Heinz Wiendl discusses why disease progression can occur even when relapses are well controlled and MRI scans appear stable. The conversation focuses on how subtle changes can develop over time, how they can be recognized earlier, and what this means for people living with MS. This episode was supported by Sanofi S.A. and is an English translation of the original German interview. You can find the full blog article with all questions, answers, and additional context here: 👉 https://ms-perspektive.de/en/148-heinz-wiendl/ Topics discussed in this episode why disease progression can occur even when relapses are well controlled how often this affects people and why most patients remain stable what progression independent of relapse activity (PIRA) means in everyday practice the importance of invisible symptoms such as fatigue, cognitive changes, bladder dysfunction, and spasticity why commonly used scales often fail to capture subtle but relevant changes what MRI can reveal, where its limits lie, and why it should not be interpreted in isolation why long-term observation over months matters more than day-to-day fluctuations how patients can actively contribute by observing and documenting changes what current research tells us about silent inflammatory processes and endophenotypes why reliable biomarkers are still missing and what research is focusing on the therapeutic idea behind BTK inhibitors and which patient groups may benefit a realistic and hopeful outlook on future developments in MS care Is there anything you would like to share with our listeners as a final message? Prof. Dr. Heinz Wiendl: I believe my mos

In this very personal episode, I open the doors behind the microphone and share what truly shaped 2025 – a year of endurance, motherhood, advocacy work, sleep deprivation, and two weekly podcast shows in German and English. I also share what will change in 2026 – with a focus on sleep, gentle growth, an English talk format, books, and fast-track MS knowledge for the community. https://ms-perspektive.de/EN/147-review-2025 🔍 In this episode You will hear about: why I do a yearly review and why reflection matters 2025 in one word: endurance family milestones – daycare and school beginnings building a home instead of moving again work highlights: Patient Council & AI Whitepaper on Shared Decision Making what AI can and cannot replace 57 German & 54 English episodes in 2025 – and the price I paid the joy of the German "Kamingespräch" format – and plans to launch an English version lessons learned about boundaries, friendships, and MS what I will prioritise in 2026 (sleep, health, books, course, newsletter) 🌍 Global audience MS-Perspective is now listened to in 80+ countries. Guests so far came from: 🌎 North America 🌍 South America 🌍 Europe 🌍 Africa 🌏 Australia …plus expats from the Middle East ➡️ In 2026 I hope to welcome first interview guests from Asia as well. 🧩 Links & resources mentioned AI Whitepaper on Shared Decision Making → 250822_AI_SDM_Whitepaper_english.pdf German podcast archive → <a href="https://ms-perspektive.d

This episode was supported by Sanofi S.A. In this episode, I speak with Dr. Klarissa Hanja Stürner about chronic smoldering inflammation in multiple sclerosis (MS)—a slow, often hidden process that may drive disease progression even when relapses and MRI activity appear stable. Dr. Stürner explains how chronic inflammation behind the blood–brain barrier differs from acute relapse-related inflammation, why it is so difficult to detect with current imaging, and which warning signs people with MS should take seriously. We also discuss PIRA (Progression Independent of Relapse Activity), the role of microglia and macrophages, and why new treatment approaches such as BTK inhibitors are considered a promising step forward in MS research. This episode offers a clear, evidence-based, and hopeful perspective for anyone who wants to better understand MS progression beyond relapses. 📝 Read the full article on the MS-Perspective blog for a detailed written summary of the conversation: https://ms-perspektive.de/EN/146-dr-stuerner Topics covered in this episode What chronic smoldering inflammation in MS means Differences between acute relapses and smoldering inflammation Inflammation behind the blood–brain barrier Why MRI often fails to detect these processes Clinical red flags for progression without relapses PIRA explained in simple terms The role of microglia and macrophages in MS BTK inhibitors as a new therapeutic approach Current challenges an

Living with multiple sclerosis means making daily decisions that go far beyond medication. Mental health, lifestyle, rehabilitation, empowerment, and access to care all play a crucial role in how well people live with MS. In this special episode from ECTRIMS 2025, I bring together insights from six international experts who presented new research on well-being, mental health, lifestyle interventions, and patient empowerment in MS. You'll hear what is already evidence-based, what looks promising but needs more research, and—most importantly—what you can realistically take from this research into your everyday life with MS. 👉 You can also read the full blog article with all details and references here: https://ms-perspektive.de/EN/145-mental-health 🧠 Presentations & Key Topics 1️⃣ Types of Mental Health and Psychological Well-Being Rehabilitation in MS Christoph Heesen (Germany) What actually works when it comes to mental health support in MS? This presentation reviews psychotherapy, mindfulness, self-management, and multidisciplinary rehabilitation—and why mental health care should be a standard part of MS treatment. 2️⃣ Designing Well-Being Rehabilitation Trials With Implementation in Mind Marcia Finlayson (Canada) Why promising interventions often never reach everyday care—and how research design must change so that well-being programs become accessible, affordable, and sustainable for people with MS. 3️⃣ Concealment of MS Diagnosis and Symptoms Rebecca Maguire (Ireland) Many people with MS hide their diagnosis or symptoms. This talk explores how concealment affects mental health, help-seeking behavior, and long-term well-being—and what support is needed. 4️⃣ A Goal-Oriented, Personalized Well-Being Intervention for Progressive MS Silvia Poli (Italy) Insights from the Living Well Program show how personalized, goal-based approaches can restore meaning, motivation, and a sense of control—especially for people with progressive MS. 5️⃣ Nurse-Led Expert Patient Programmes in MS Care Miguel Angel Robles Sanchez (Spain) How nurse-led, empowerment-focused programs improve knowledge, confidence, and engagement with care—and why peer learning matters in long-term MS management. 6️⃣ Sustained Benefits of a Multi-Domain Lifestyle Intervention: The LIMS Study Arianne Gravesteijn (Netherlands) Long-term results from a lifestyle intervention targeting diet, physical activity, sleep, and stress show sustained improvements i

In this episode, wheelchair padel athlete and clinical research expert Kristen Paskins shares how she rebuilt her confidence after suddenly losing her mobility in 2022. Traveling alone with a wheelchair for the first time — to attend the EUPATI training in Madrid — became a turning point in her journey toward independence, advocacy, and self-discovery. You can read through the interview on my blog: https://ms-perspektive.de/EN/144-kristen We talk honestly about the emotional and practical realities of traveling with a wheelchair, including airport challenges, accessibility barriers, fears, resilience, and the unexpected wins that come from stepping outside your comfort zone. Kristen also explains how disability sport helped her reclaim joy and identity, and why patient advocacy has become one of her strongest missions. A key part of the conversation is the global Rights on Flights campaign led by disability advocate Sophie Morgan, which fights for equitable and safe air travel for people with mobility impairments. Kristen shares her experience, why reporting incidents matters, and how collective voices can drive meaningful change. Links mentioned in the episode: 🎥 Documentary "Sophie Morgan's Fight to Fly" (Channel 4): https://www.channel4.com/programmes/sophie-morgans-fight-to-fly 🌍 Rights on Flights – Report air travel incidents & join the movement: https://rightsonflights.com/ In this episode, you'll learn: • How Kristen lost her mobility and rebuilt her independence • The emotional impact of traveling alone for the first time • Practical tips for accessible travel and navigating mobility assistance<br data-start="1

In this episode of MS-Perspektive International, host Nele von Horsten talks with Dr. Riley Bove, Associate Professor of Neurology at UCSF, about how menopause impacts MS. They explore hormonal changes in perimenopause, why menopausal and MS symptoms overlap so strongly and what this means for diagnosis and daily life. You can read through the cleaned transcript of the interview on my blog: https://ms-perspektive.de/EN/143-riley-bove Dr. Bove explains the benefits and risks of hormone therapy, including the importance of the "window of opportunity", and shares findings from recent studies using biomarkers like neurofilament light chain. She also offers practical advice on symptom management, lifestyle strategies and how women with MS can use midlife as a health checkpoint. In this episode you'll learn: Which hormonal changes happen in perimenopause Why menopause can mimic MS progression How hormone therapy may help – and when to be careful What biomarkers tell us about brain aging in MS Which lifestyle strategies support women in this phase How and where can people follow Dr. Bove's research or get in touch? Dr. Riley Bove: People are welcome to contact me by email via UCSF and to visit our lab website at bovelab.ucsf.edu. There, you can find more information about our researc

Maybe you already use your phone, a wearable, or one of the many MS-related apps to track your symptoms or support your daily routines. But when it comes to rehabilitation, the real question is: which digital tools actually help — and which ones are just noise? In this ECTRIMS session, researchers from around the world explored how technology can enhance rehabilitation for people with MS. Their message was clear: digital tools can open new doors, but only when they are designed well, grounded in science, and truly support your everyday life. You can read through the complete article here: https://ms-perspektive.de/EN/142-digital-rehab In this episode, you'll hear about: 1. Alon Kalron – Israel How digital technologies—from smartphones to sensor-based rehab tools—can extend what your rehab team can see and support between appointments. 2. Andrea Tacchino – Italy Why digital outcome measurements matter, how sensors can capture real-life changes, and what it takes to turn raw data into meaningful digital biomarkers. 3. Gabriele Perachiotti – Italy How high-intensity, task-oriented circuit training can improve balance, fatigue, and quality of life—even in people with severe mobility limitations—and how a simple home-based telerehab setup helps maintain progress. 4. Andrea Baroni – Italy How machine-learning models can predict rehab outcomes and why your starting functional level is the strongest predictor of future improvement. 5. Diogo Haddad Santos – Brazil Why "strange" visual symptoms in MS often reflect real, measurable eye-movement changes—and how portable eye-tracking may become a new digital biomarker. 6. Katrin Parmar – Switzerland Which balance tests reflect high-tech lab measurements, and why static and dynamic balance need to be tested separately. Topics we explore: The promise and limits of MS apps & wearable sensors Digital biomarkers for gait, balance, fatigue, and vision Task-oriented training and telerehabilitation Predicting rehab outcomes using machine learning Eye-tracking and the hidden world of visual symptoms <p data-start="2521" d

👉 For a full deep-dive into this conversation, including all details, quotes, links and context, please visit the accompanying blog article on https://ms-perspektive.com/141-kenya. MS in Kenya is likely severely underdiagnosed. The Atlas of MS lists only around 200 known cases in a country of almost 58 million people — yet access to neurologists, MRI scans and specialist care is extremely limited, especially in rural regions. Many families must prioritise basic needs like food over long and costly medical journeys, leaving countless people undiagnosed. In some communities, MS-like symptoms are still linked to witchcraft, leading to stigma, social exclusion or even abandoned marriages. In this episode, Rev. Kipchirchir Kigen — reverend, public health practitioner and advocate — explains why MS remains largely invisible in Kenya and how he works with religious leaders and communities to replace fear with understanding. He also shares his own long journey with neurological symptoms, misdiagnoses and the struggle to access care. We discuss: Why MS is likely far more common in Kenya than official numbers suggest What the journey to diagnosis looks like in a low-resource setting How stigma and misconceptions affect people with neurological symptoms The role of churches and community leaders in creating awareness Rev. Kigen's personal story of uncertainty, resilience and advocacy What needs to change in Kenya's health system to improve MS care Mentioned resources: Atlas of MS MS organisations and foundations in Kenya <p data

In this episode, I take you behind the scenes of ECTRIMS 2025 and explore seven fascinating studies that show how multiple sclerosis (MS) care is evolving — from safety monitoring and infection risks to data-driven, personalized treatment decisions. You'll learn about: How often late-onset neutropenia occurs in people on Rituximab and who's most at risk. What factors increase the chance of serious infections with Ocrelizumab. Why early high-efficacy treatment leads to better long-term outcomes across four countries. What happens to memory B cells during long-term Ocrelizumab therapy and what that means for extended dosing intervals. What the FAERS database tells us about tumor signals and why HPV vaccination remains essential for women with MS. How real-world data from the TEMPOS study (France) reveal a massive shift toward anti-CD20 therapies — especially Ofatumumab. And finally, how a new AI-based prediction tool helps estimate individual risk when stopping a DMT. 🎯 Main takeaway: MS treatment is moving toward earlier, stronger, and more personalized approaches — guided by real-world evidence and smart technology. 👉 You can read the full article with all study details, numbers, and takeaways here: https://ms-perspektive.de/en/140-ectrims-rwe --- See you soon and try to make

🧠 Episode Summary The new 2024 McDonald Criteria for diagnosing multiple sclerosis (MS) mark an important milestone: doctors can now confirm MS earlier and with greater confidence, allowing treatment to start sooner and potentially improving long-term outcomes. In this episode, we explore what has changed since the 2017 version, why these updates matter, and how they affect people living with — or at risk of — MS. 📋 Key Points Covered What the McDonald Criteria are and why they matter The biggest updates in 2024 – including the role of CSF (oligoclonal bands) How Radiologically Isolated Syndrome (RIS) may now count as MS in some cases Why early diagnosis can make a real difference in the course of the disease When people with CIS or RIS should consider speaking with their neurologist again 🔍 For Listeners Living With MS or Early Symptoms If you've previously been told you have a Clinically Isolated Syndrome (CIS) or Radiologically Isolated Syndrome (RIS), it may be worth revisiting your diagnosis. The new criteria might change your status — and early treatment could help protect your long-term health. Always discuss any concerns or new information with your neurologist. 💻 Read the Full Blog Article You can find a detailed written version of t

In this episode, we explore key insights from the ECTRIMS 2025 session "Symptoms and Symptom Management". Four young researchers share findings that go beyond MRI scans and lab data — focusing on what truly matters in daily life with MS. 🧠 Andreas Kirknæs Færk examined how symptoms cluster and evolve over time. 📊 Sean Apap Mangion showed how patient-reported outcomes can predict disease progression. 💼 Mathia Kirstein explored symptom-related risk factors for early retirement. 💊 Marie Mainguy highlighted inequalities in access to symptomatic treatments across France. Together, their work reminds us that MS care must be holistic — addressing physical, cognitive, and emotional health, as well as fair access to therapy. Listen in to learn: Which symptoms tend to occur together and why that matters How self-reported data can signal early changes in MS What factors lead to early retirement in people with MS Why access to treatment for spasticity and walking impairment remains uneven How young scientists are shaping the future of MS research For more details and resources, visit 👉 https://ms-perspektive.com/138-symptom-management ✨ Closing Thoughts These studies not only advance scientific understanding — they also reflect the dedication and creativity of a new generation of researchers who are deeply attun

In this episode, we dive into five innovative rehabilitation studies presented at ECTRIMS 2025. From the validation of digital assessments to family-centered care and home-based rehabilitation, these studies offer promising insights for people living with MS. Whether you're a patient, caregiver, or healthcare professional, this episode highlights tools and approaches that can improve quality of life, independence, and symptom management. 📰 Prefer reading instead? 👉 Check out the full blog article with all study summaries here: https://ms-perspektive.com/137-rehab-ectrims 🧠 Poster Summaries 1. Robot-based assessment of motor-cognitive dual-task abilities in unimpaired adults Authors: E. Misley et al. Summary: This study validated the use of "hunova" – a robotic platform that integrates digital cognitive tests with motor tasks – in healthy adults. Results: Strong correlations with traditional tests, faster performance digitally, and high agreement between test types suggest this tool could be valuable in MS for real-time, objective, and combined motor-cognitive assessments. Evidence Level: Early validation study (Level III – non-randomized). Why it matters: Digital cognitive-motor testing could offer a faster, scalable way to detect subtle impairments in MS. 2. Evaluating Inpatient Rehabilitation at a National MS Centre in Norway Authors: Gunnes, M. et al. Summary: A structured assessment of inpatient rehabilitation outcomes across multiple domains (QoL, fatigue, self-efficacy, symptoms). Results: Significant improvements in symptom burden, QoL, and function from admission to discharge and 6 weeks post-discharge. Some relapse after discharge indicates the need for continued support. Evidence Level: Level II (observational, real-world data). Why it matters: Inpatient rehab clearly benefits MS patients, but ongoing follow-up is crucial to maintain gains. 3. Combining Home-Based Digital Telerehabilitation with In-Hospital Therapy in Progressive MS Authors: Gandolfi M. et al. Summary: Participants with progressive MS received both in-hospital sessions and 12 weeks of digital telerehabilitation. Results: Although primary motor outcomes did not show significant differences yet, patient satisfaction and acceptability of the digital program were very high. Evidence Level: Level II (well-designed RCT, small sample). Why it matters: A hybrid rehab model could become a scalable, patient-friendly long-term approach, especially for those with limited access to clinics. 4. Effectiveness of MS Centers vs. General Healthcare in Improving QoL Authors: E. Grigoriadou et al. Summary: Compared outcomes in patients treated at MS Centers versus general healthcare settings. Re

In this episode, I explore five exciting studies from ECTRIMS 2025 that reveal how cognitive training, mindfulness, and smart rehab planning can support brain function and independence in people with MS. You can read the text version here: https://ms-perspektive.com/136-cognitive-rehab Cognitive changes affect a large percentage of people with multiple sclerosis—yet they often remain invisible or unspoken. This episode focuses on new, science-backed strategies to strengthen thinking skills, reduce stress, and even promote brain reorganization. 🧠 What's inside: I highlight 5 research posters presented at ECTRIMS 2025: Digital brain training boosts memory and reshapes brain activity. Multisensory integration improves with targeted cognitive exercises. Mindfulness-based group programs reduce fatigue, anxiety, and stress. Goal setting in rehab matters – and needs to be measurable. Digital testing may detect early cognitive decline, even remotely. 💡 These findings offer practical insights into how non-pharmacological interventions can support everyday life with MS. 📚 Referenced Studies All posters were presented at the ECTRIMS 2025 Congress. For detailed summaries, check out the blog post: https://ms-perspektive.com/136-cognitive-rehab --- For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

In this insightful episode, I talk with Dr. Melika Arab Bafrani, postdoctoral researcher at the University of California, San Francisco (UCSF), about a topic that deserves far more attention — vaginal health and MS. MS affects not only the nervous system but also the immune balance of the whole body, including intimate areas. Dr. Bafrani explains how disease-modifying therapies (DMTs) can alter the vaginal and urinary microbiome, why collaboration between neurologists and gynecologists is vital, and what warning signs women with MS should never ignore. We also discuss: How DMTs can influence the vaginal environment Early symptoms of imbalance or infection to look out for Daily habits and preventive care for intimate well-being Research gaps and why women's participation in studies is so important How personalized medicine could shape the future of MS treatment Whether you're newly diagnosed or have lived with MS for years, this episode helps you better understand how intimate health connects to your overall MS journey. 📝 Read the full blog article with all questions and answers here: https://ms-perspektive.com/135-vaginal-health

In this solo episode from ECTRIMS 2023, I share the highlights from the inspiring lecture by Prof. Maria Pia Amato on cognition and multiple sclerosis. Cognitive changes are common in MS and affect nearly half of all patients – from attention and memory to language and executive function. You will learn: How cognitive impairment appears across the MS spectrum (including CIS, RIS, pediatric MS, and aging). Why regular cognitive screening matters and which tools are recommended. Insights into the underlying mechanisms of cognitive decline. The role of cognitive reserve and lifestyle in protecting brain health. Management approaches from DMTs to cognitive rehabilitation and digital tools. Future directions in MS research and patient care. Cognition is increasingly recognized as a core focus in MS care. This episode explains why – and what you can do about it. 👉 Mentioned researchers and papers will be linked on the blog which you can find here: https://ms-perspektive.com/134-ectrims-2 --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

Read the full blog article here: ms-perspektive.com – ECTRIMS 2025 MS Highlights ECTRIMS 2025 MS Highlights: First Insights for Patients ECTRIMS is the world's largest MS conference, and in 2025 it takes place in Barcelona. Thousands of researchers and clinicians share the newest findings on multiple sclerosis. In this episode, we look at the first highlights from the press releases: Early biomarkers for silent progression (PIRA) How menopause may influence MS and comorbidities The role of ultra-processed foods in relapses and MRI lesions Environmental risk: pediatric ozone exposure Ocrelizumab's strong relapse control—and its limits against progression Learn what this research could mean for you, why statistical significance isn't always clinical significance, and why these insights matter for the future of MS care. More iformation on: ectrims.eu/ectrims2025/ See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far. 🔗 References For those who would like to dive deeper, here are the scientific abstracts presented at ECTRIMS 2025: PIRA biomarkers – Landwehr A., et al. Proteomic Signatures of PIRA: Distinct proteins in cerebrospinal fluid are associated with progression independent of relapse activity in multiple sclerosis. ECTRIMS 2025, Barcelona. Menopause and MS – Şimşek SY. Impact of Menopause on

Access to MS treatments worldwide remains highly unequal. While research and innovation are making great strides, many people with multiple sclerosis are not benefiting from these advances. In this episode, Anne Helme, Head of Research and Access at the MS International Federation (MSIF), talks about the global challenges of treatment access, MSIF's work to address them, and the hopes for a fairer future in MS care. We cover: Why a global approach to access is more important than ever Where access to modern MS therapies is most limited The biggest barriers: cost, availability, regulations, and information gaps How MSIF and its members are working to improve access worldwide Options for patients in countries with limited or unaffordable treatments Developments that bring hope for the future 👉 Read the full blog article: Access to MS Treatments Worldwide – Interview with MSIF's Anne Helme - https://ms-perspektive.com/132-anne-helme 👉 Learn more about MSIF's work on access and advocacy: MSIF – Access to MS healthcare - https://www.msif.org/access-to-ms-healthcare/ --- A big thank you to Anne Helme and all her colleagues for everything they have reached already for the wordlwide MS community. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

👉 Read the full blog article here: https://ms-perspektive.com/131-joke-soetart In this inspiring interview, Belgian midwife and patient expert Joke Soetaert shares how her 2019 MS diagnosis became a catalyst for growth, advocacy, and community. She talks about mindset, research participation, empowering young people with MS, and why patient voices belong at every table. Overview of topics Joke's MS diagnosis in 2019 and first symptoms Mindset, lifestyle and work changes Participation in more than 10 MS studies Why patient voices matter in research and care Empowering youth with MS at MS-Liga Vlaanderen Insights from ECTRIMS & EMSP conferences Prevention, comorbidities, and resilience Hopes for precision medicine and the future Before the Interview ✨ Discover more inspiring patient stories and expert interviews on MS-Perspektive Blog: https://ms-perspektive.com/blog📬 Stay updated and receive tips, stories, and news directly in your inbox – sign up for the MS-Perspektive Newsletter: https://ms-perspektive.com/newsletter Complete Interview 1. Personal Journey & MS Diagnosis Can you introduce yourself and tell us a bit about your work as a midwife? Joke: I'm really grateful that you thought of me, and I'm so happy to be part of this podcast. So hello, my name is Joke Soetaert and I am 33 years old. I live in Belgium and I work as a midwife. Most of the time I take care of premature and sick babies, but I also work on the maternity ward with mothers who have just given birth and their newborns, pregnant women and women recovering from gynecological surgery. How did you experience the moment of your MS diagnosis in 2019, both personally and professionally? Joke: Well, it actually started about nine months earlier. In the summer of 2018, I was about to change jobs. I was working in a large hospital in the surgical theatre, and after five years I was finally going to follow my dream of working as a midwife. Just before that change, I had an episode of optic neuritis. The neurologist told me that I had a higher risk of developing MS and suggested regular follow-up at neurology. So nine months later, I was settling into my new job. I had just finished four very busy night shifts. After the last one, I felt a slight numbness in my fingertips. The neurologist had told me that almost any symptom could be linked to MS, so of course it crossed my mind. But I didn't really believed it, I was still in denial. The next morning, I woke up with the same feeling in the fingers of my other hand. That could no longer be a coincidence. I contacted my neurologist, and very quickly I w

What does it mean to live with MS abroad? In this inspiring interview, I speak with Robert Joyce, MS patient, blogger at A 30 Minute Life, and strong advocate for patient involvement in research. Robert shares his journey from diagnosis at 23 to moving from Ireland to Spain for health reasons. We talk about the impact of climate, differences between Spanish and Irish healthcare, coping with chronic pain, and why patient voices are essential in research. He also gives us a glimpse into his hopes for the future of MS care and personalized medicine. Topics we cover: Robert's MS diagnosis and turning points Why he started A 30 Minute Life Life with MS in Spain: climate, healthcare, culture Coping strategies for chronic pain and mental health The power of patient voices in research Hopes for personalized medicine and patient advocacy Links & Resources: Blog: https://a30minutelife.com/ Connect with Robert on LinkedIn 👉 You can also find a written summary of this interview on my blog: https://ms-perspektive.com/130-robert-joyce — perfect if you prefer reading or want to revisit the highlights. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

Neural stem cells may calm brain inflammation and enable myelin repair in progressive MS. Safety looks promising; phase-2 planning is underway. You can read the interview extract on my blog: https://ms-perspektive.com/129-luca-peruzzotti-jametti Progressive MS needs therapies that work inside the brain. In this episode, Dr. Luca Peruzzotti Jametti explains why remyelination is so hard in humans, how neural stem cells (NSCs) can calm chronic inflammation through paracrine signals, and when true myelin repair may be feasible. We discuss Phase-1 safety data, the road to Phase-2, who might benefit first (likely progressive MS), and how metabolic approaches to mitochondria/bioenergetics could stack with cell therapies. Dr. Jametti also shares a realistic timeline (5–10 years for larger trials) and a hopeful outlook on disability reversal within 10–15 years. Resources and lab/social links below. We cover: Relapses vs. PIRA and microglia Why human remyelination often stalls NSCs: paracrine effects vs. cell replacement Safety and delivery routes (intraventricular/intrathecal) Who/when to treat; aHSCT sequencing Mitochondrial metabolism strategies and the bigger pipeline How and where can interested people follow your research activities? <div

In this episode, I share insights from a new study published in Nature Medicine: "AI-driven reclassification of multiple sclerosis progression." 🌐 Blog: https://ms-perspektive.com/128-ai-ms-reclassification An international team of researchers analyzed data from more than 8,000 patients, 118,000 visits, and 35,000 MRI scans. With the help of artificial intelligence (AI), they discovered that MS is not best described by the traditional categories of RRMS, SPMS, and PPMS. Instead, MS should be seen as a continuum with four clinical meta-states: Early / Mild / Evolving MS (EME) – stable, little disability, few brain changes Asymptomatic activity – inflammation visible on MRI but without symptoms Relapse – sudden worsening of symptoms Advanced MS – higher disability and more brain damage Why this matters: patients rarely move directly from early to advanced MS, but usually pass through phases of active disease first. This has major implications for treatment decisions, monitoring, and drug development. 👉 Read the full blog article here: 🔗 AI-driven reclassification of Multiple Sclerosis 🎧 Related episodes for deeper insights Episode 95 – Gavin Giovannoni: Smoldering MS <a

In this episode, I'm offering a behind-the-scenes look at a recent research project I conducted based on a listener survey among the German-speaking audience of the MS-Perspektive Podcast. While the detailed results are currently under review for publication, I share why I launched the study, what questions I was most curious about, and what might come next. The survey was part of my master's thesis and focused on questions like: Do podcast listeners feel they've learned more about MS? Does it influence their confidence in dealing with the disease? Which types of content are most helpful—and for whom? This episode also includes a call to participate in future research, particularly for international listeners of this podcast. 🧠 Topics covered: What inspired the study Key research questions First impressions from the data Plans for future (international) surveys A heartfelt thank you to all participants How you can get involved 💬 Got feedback or ideas for future research? Reach out via the contact form at https://ms-perspektive.de 📨 Blog article: https://ms-perspektive.com/127-survey

In this episode, we meet Bruno Amaral, a digital strategist, teacher, and MS patient from Lisbon. After his diagnosis, Bruno not only underwent autologous hematopoietic stem cell transplantation (aHSCT) to manage his progression—but also created GregoryAI, a digital tool designed to help MS patients find relevant research and clinical trials without needing deep tech knowledge. Bruno's story is one of resilience, creativity, and a deep belief in patient empowerment through access to information. Most importantly: he's actively looking to collaborate with doctors, researchers, and digital health experts to further develop and refine GregoryAI. 👉 If you're working in MS, neurology, clinical trials, or digital health—this conversation is a must-listen. 📝 You can also read the full story in Bruno's blog post: https://ms-perspektive.com/126-gregoryai 🧭 Topics Covered Bruno's personal and professional background MS diagnosis and early progression Lifestyle changes and emotional challenges Treatment choices and the decision to pursue aHSCT Experience with stem cell therapy in Portugal The creation and evolution of GregoryAI Making AI accessible for non-technical users Community feedback and vision for the tool Call for collaboration and next development steps Quickfire questions and personal insights 🔗 Links and Resources 🌐 Gregory for MS – https://gregory-ms.com 💡 Gregory AI (Main Site) – https://gre

📖 Read the full blog interview here 👉 https://ms-perspektive.com/125-barbara-willekens 🎙️ What's this episode about? In episode 125, neurologist Prof. Barbara Willekens shares powerful insights on how to protect and improve your brain health while living with MS. We talk about the importance of early treatment, how lifestyle changes and digital tools can help, and why shared decision-making empowers patients to take control of their care. Whether you're newly diagnosed or have been managing MS for years, this conversation offers guidance, hope, and practical tips to support your cognitive and physical well-being. 🧠 Topics we cover: What "brain health" really means for people with MS Why early and high-efficacy disease-modifying treatments (DMTs) are essential The role of lifestyle choices: small changes, big impact How to manage comorbidities like anxiety, sleep problems or hypertension Strategies for maintaining cognitive function Digital tools and wearables to track your brain health What shared decision-making looks like in real life The global inequality in MS care and what can be done about it Prof. Willekens' vision for the <strong d

🔗 Full blog post: https://yourlinktotheblogpost.com (Update with your actual URL) 🔗 Useful Links for Exploring Clinical Trials: 🌍 Global Trial Search (ClinicalTrials.gov): https://www.clinicaltrials.gov 🇪🇺 EU Clinical Trials Register (EU CTIS): https://www.euclinicaltrials.eu 🎧 Episode Overview In this episode, we dive into the world of clinical trials – a topic full of potential, but often surrounded by hesitation or confusion. If you're living with Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorder (NMOSD), or MOG Antibody Disease (MOGAD), this conversation is for you. We'll explore: Why clinical trials can offer real opportunities, not just for future generations, but for you personally How willingness to participate varies globally – and why that matters The role of education, trust, and transparent communication Common fears and misconceptions – and how to address them Practical things to ask before joining a study How AI tools can support your search for the right trial 💡 Key Takeaways Clinical trials can provide early access to new therapies, especially important for progressive or smouldering MS Patient education must be clear, accessible, and go beyond fine print Trust is essential: patients need to feel safe, heard, and respected Barriers like time commitment, fear of placebos, or lack of a

👤 About this episode In this episode, Claudia Dieckmann shares her personal journey of living with multiple sclerosis (MS) and how she transformed her diagnosis into a driving force for community action and purpose-driven fundraising. Based in Cape Town, South Africa, Claudia is not only an MS advocate but also a creative event organizer behind campaigns like Swim4MS and Quiz4MS, supporting the work of Multiple Sclerosis South Africa (NPO 003-275). Claudia speaks openly about her diagnosis, treatment changes, symptom management, and the emotional side of adjusting to a "new normal." She also reflects on the importance of community, mindset, and creating fun, inclusive spaces that raise awareness and funds for MS. 🧭 What you'll learn: How Claudia experienced her MS diagnosis and what helped her move forward Why self-empowerment and community are key pillars in her life Her personal routines and what "motion is lotion" means to her Insights into organizing MS fundraising events in South Africa Her hopes for the future of MS treatment and awareness 🔗 Resources & Links: 🎧 Listen to the episode: https://ms-perspektive.com/123-claudia-dieckmann 🏊‍♀️ Multiple Sclerosis South Africa: https://multiplesclerosis.co.za 📱 Follow MSSA on social media (Instagram, Facebook, LinkedIn, Twitter/X) 💬 Claudia's message to others living with MS: "Mindset is everything. You are not alone—and you don't have to do it all on your own." Best place to keep up to date is via the <a href= "https

In this powerful and heartfelt episode, I speak with Christelle Taute, Vice-Chair and Treasurer of the Multiple Sclerosis Society of South Africa (MSSA). Christelle shares her personal MS journey spanning over two decades, including her experience with a stem cell transplant, how she built resilience, and her passionate advocacy work in South Africa. 💚 Whether you're newly diagnosed, living with MS for years, or supporting someone with MS, Christelle's story offers hope, honesty, and practical insight. 👉 Full blog post with transcript: https://ms-perspektive.com/122-christelle-taute 🔑 Topics covered Christelle's MS diagnosis story and early challenges Choosing (and delaying) treatment in the South African system Undergoing aHSCT in 2015: how, why, and what changed How gratitude and structure help her navigate daily symptoms Her advocacy work with MSSA and participation in the May 50K Thoughts on what needs to change in MS care in the future Her wishes, goals, and advice to her younger self 🔗 Resources & Links mentioned MSSA – Multiple Sclerosis Society of South Africa: https://multiplesclerosis.co.za Christelle's blog on her stem cell journey (archived): https://christelletaute.wordpress.com/ MSIF – Multiple Sclerosis International Federation: https://www.msif.org The May 50K Campaign: https://www.themay50k.com <li data-start="206

🔗 Full interview & blog post to read: https://ms-perspektive.com/121-susanne In this interview, Susanne Melanie Schmid shares her journey with multiple sclerosis, how she found strength in vulnerability, and what helped her push beyond limits—literally and figuratively. As part of the international TheMay50K challenge, she not only walked over 60 kilometers, but also built meaningful connections, including with MS advocates in South Africa. Susanne speaks about her diagnosis, therapeutic path, and what drives her today with warmth, clarity, and optimism. This conversation originally aired as part of the MS Perspektive International podcast. A German-language version of the interview is also available. Table of Contents Introduction – Who is Susanne Melanie Schmid? Diagnosis and status TheMay50K Wishes and goals Quickfire Q&A Session Farewell Mentioned Reso

👉 Read the full interview as a blog article (including all quotes and topics): 🔗 https://ms-perspektive.com/120-luigi-azzarone ⏱ Time Stamps – Jump to the Part That Matters Most to You: 00:00 – Introduction 02:15 – Luigi's background and MS diagnosis 05:42 – How MS led him to neuroscience 08:30 – Speaking at the European Parliament 12:10 – Main messages to policymakers and youth advocates 15:20 – Barriers in accessible housing for young people with disabilities 18:55 – Why information and awareness are crucial 21:10 – Practical solutions for inclusive housing 24:05 – Transitioning existing buildings into accessible homes 26:30 – The role of youth voices in shaping policy 29:45 – Encouragement for young people with MS 32:10 – Balancing life as a researcher and a patient 35:00 – Hopes for future autoimmune disease research 38:05 – Quickfire questions 40:20 – Final reflections and message to the MS community 42:30 – Where to find Luigi online 📝 Summary In this episode, Nele speaks with Luigi Azzarone, a young Italian scientist living with multiple sclerosis (MS). Diagnosed at age 17, Luigi transformed his personal experience into motivation for scientific and social impact. Today, he works in regulatory affairs and neuroscience research while actively advocating for accessibility, inclusion, and patient rights. We discuss Luigi's speech at the European Parliament, the urgent need for accessible housing, and how awareness campaigns can empower people living with chronic conditions. He shares how living with MS informs his research — and how young people can make their voices heard in science, politics, and beyond. A must-listen for anyone looking for hope, perspective, and real-world action. <h2 data-start="215