MS-Perspektive - The Multiple Sclerosis Podcast

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 https://www.fda.gov/medwatch https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program United Kingdom MHRA Yellow Card Scheme https://yellowcard.mhra.gov.uk Canada Health Canada – Canada Vigilance Program https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/adverse-reaction-reporting.html Is there anything else you would like to say to our listeners? Dr. Nora Möhn: I would like to express my sincere thanks for listening and for your interest in this exciting topic. I would also like to encourage all those affected to openly express any concerns or worries they may have regarding drug safety/potential side effects to their healthcare providers so that an informed treatment decision can be made in consultation with them. The field of MS therapeutics can sometimes be very confusing and overwhelming, so it is essential to address any uncertainties and fears. Where can you find her and her scientific work on the Internet? Dr. Nora Möhn: My scientific publications can be found via PubMed by searching for "Nora Möhn" on the website of the U.S. National Library of Medicine (NIH): https://pubmed.ncbi.nlm.nih.gov Further professional information and updates can be found on my LinkedIn profile. --- I hope you now know more about pharmacovigilance and feel confident enough to discuss any concerns or fears you may have about the treatments suggested to you with your doctor. And remember, even though MS has become much less frightening, it is still a serious disease that should be slowed down as much as possible with medication and a healthy lifestyle. This will ensure that you can still lead a fulfilling life in several decades' time and won't have to regret missed opportunities. 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. ⚠️ Medical Disclaimer This podcast provides medical background information but does not replace individual medical advice. Please discuss all therapy decisions and concerns with your treating neurologist.

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 How exercise affects immune cells HIIT vs moderate exercise: what's the difference? Can the immune system be "trained" like a muscle? What we still need to learn specifically for people with MS Why regular movement matters more than perfect training 💛 A gentle reminder You don't have to exercise perfectly or intensely to benefit. The most important thing is to stay active regularly. Whether it's walking, cycling, strength training, or something else you enjoy — consistency matters more than intensity, especially when living with MS. 🔎 Read more 📖 Full interview & background: All questions and answers from this episode are available on the MS-Perspektive blog, including detailed explanations and practical insights: https://ms-perspektive.de/en/153-exercise --- 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.

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 articles: https://ms-perspektive.de/en/152-eupati Finally, what message would you like to leave with our listeners, especially patients? Dr. Ingrid Klingmann: Please explore EUPATI and use the resources available. Move away from complaining and toward action. Knowledge builds confidence, and confidence empowers patients to shape their own healthcare journey. --- 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 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 Empowerment and future perspectives in MS care 🔗 Links & Resources 🌍 Learn more about EUPATI: https://eupati.eu 💼 Connect with Paola on LinkedIn: Paola Escamilla Greenham | LinkedIn 📖 Read the full blog article: 👉 https://ms-perspektive.de/en/151-paola ... 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.

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 they work, what makes them different, and why they are promising What "non-inferiority" in clinical studies really means Possible side effects and the need for careful monitoring Why new therapies may initially be used in specialized MS centers Challenges in rural healthcare and the importance of collaboration What the future of MS treatment may look like in the next five years 📖 You can also read the full interview on my blog for a detailed, structured version of the conversation: https://ms-perspektive.de/en/150-boris-kallmann 💬 Takeaway MS is highly individual – and so are the ways people experience progression. Staying informed, observing changes over time, and working closely with experienced healthcare providers can make a meaningful difference.

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 Future directions in MS and microbiome research Final message to people living with MS Prof. Dr. Ashutosh Mangalam: MS should not define you. A healthy lifestyle, social support, and staying positive truly matter. I have great respect for what people with MS go through every day. From a researcher's perspective, it is incredibly important for us to listen to patients, understand their real challenges, and work on questions that can truly improve quality of life. That is what motivates my work. Nele von Horsten: Thank you so much, Ashu, for this insightful and hopeful conversation. --- 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, 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 most important message is this: we can be hopeful. The developments of recent years show that we are far from reaching the end of the road. On the contrary, we have learned that progress continues — new therapies are being developed, and our understanding of the disease is steadily improving. At the same time, there are still cases that are frustrating, because patients are not treated early or effectively enough, or because the disease course is particularly challenging. That is precisely why we must continue to do research, continue to improve, and continue to refine our approaches. My hope is that in five years' time, we will be able to say: now everyone truly benefits from these advances. And I hope this sends a positive signal — one of courage and optimism for the future. --- I would like to thank Prof. Heinz Wiendl for this insightful interview and for his encouraging outlook on current developments and future perspectives. 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 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 → Alle Folgen vom Podcast sortiert nach Themenbereichen English podcast episodes → Alle Folgen vom Podcast sortiert nach Themenbereichen Episode on sleep / fatigue → The Power of Sleep and Exercise in Managing MS Episode on pregnancy & MS → Pregnancy, childbirth, and breastfeeding with multiple sclerosis Newsletter sign-up → Newsletter mit positiven Impulsen zur Multiplen Sklerose (MS) MS course waiting list (coming soon) About the host → Wer ist Nele Handwerker von MS-Perspektive? Mehr über mich... ✉️ Connect with me I would love to hear what you wish for the English podcast in 2026. Send me a message anytime: Instagram: → Nele von Horsten (geb. Handwerker) (@ms.perspektive) • Instagram photos and videos Email: → nele@ms-perspektive.com ⭐ If this episode supported you… Please consider leaving a rating or review – it helps others with MS find this podcast more easily. --- 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.

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 and future directions in MS research --- Many thanks to Dr. Stürner for the insightful interview and this positive outlook on the present and the future. 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.

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 in anxiety, fatigue, psychological impact, and general health over 24 months. 🌱 What This Means for You Across all six presentations, one message stands out: Living well with MS is multifaceted, modifiable, and supported by growing evidence. Mental health, lifestyle habits, empowerment, and personalized goals are not "extras"—they are essential parts of MS care today and in the future. 📌 Further Reading 👉 Read the full accompanying blog article with detailed explanations and practical takeaways: https://ms-perspektive.de/EN/145-mental-health 🔔 Subscribe & Share If you found this episode helpful, please subscribe, share it with others living with MS, and help spread evidence-based information that empowers. This podcast shares research insights and lived perspectives. It does not replace individual medical advice. --- Hear 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, 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 • Why airports remain the biggest challenge for wheelchair users • How Rights on Flights is pushing for systemic change in aviation • The importance of community and disability sport • What Kristen wishes she'd known earlier in her journey • Her message to anyone afraid to travel with mobility challenges Whether you live with MS, FND, or another condition affecting mobility, Kristen's story offers strength, understanding, and the reassurance that life can open up again — sometimes in ways you never expected. --- Hear 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 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 research, publications and ongoing studies related to women's health, menopause and MS. --- For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

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 Static vs. dynamic balance: why both matter How to decide which digital tools are worth your time What you'll take away: Not every digital tool is useful — evidence and usability matter. Sensors can capture changes that clinic visits miss. Even with higher disability, meaningful rehab gains are possible. Your starting function strongly shapes your rehab journey. Subjective symptoms (like visual strain) deserve objective investigation. The future of MS rehab is a blend of clinic + lab + digital. --- 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.

👉 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 Global MS community & MS International Federation "Understanding MS" online course (Menzies Institute, Tasmania) --- 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, 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 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.

🧠 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 this episode, including background information and visual explanations, here: 👉 Read the full article on MS-Perspektive.de: https://ms-perspektive.de/en/139-2024-mcdonald-criteria 📚 Scientific Reference Based on: International Panel on the Diagnosis of Multiple Sclerosis (2024). Diagnosis of multiple sclerosis: 2024 revisions of the McDonald criteria. Published in The Lancet Neurology, October 2025. ❤️ Takeaway Message Earlier diagnosis means earlier action. The 2024 McDonald Criteria are designed to give people with MS a clearer, faster path to the right treatment — and a better outlook for the years ahead. --- 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, 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 attuned to the real-world challenges faced by people with MS. Their work reminds us that progress in MS care depends as much on empathy and collaboration as it does on data and technology. --- 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, 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. Results: MS Center patients had faster diagnoses, better MRI access, fewer delays, and higher satisfaction scores, with less anxiety and pain. Evidence Level: Level III (observational cohort). Why it matters: MS Centers offer significantly better coordinated care, impacting everyday wellbeing and disease progression. 5. Digital Resource Development for MS Family Caregivers (DigiTRAC Study) Authors: Afolasade Fakolade et al. Summary: A co-creation study involving caregivers and service providers to design an ideal digital support platform. Results: Top priorities were ease of use, MS treatment info, and emotional wellbeing tools. Respondents emphasized the need for multimedia content and accessible tech. Evidence Level: Level IV (qualitative + survey-based design). Why it matters: Well-designed digital resources could reduce caregiver burden and improve resilience for families supporting MS patients. 💡 Key Takeaways for People with MS: Digital tools are becoming more validated and practical for cognitive and motor rehab. Inpatient rehab works, but consistent follow-up is needed. Home-based hybrid models offer flexibility and satisfaction. Where you get care matters—MS Centers outperform general care. Supporting...

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