MS-Perspektive – the Multiple Sclerosis Podcast

In the MS-Perspektive International Podcast, I share my perspective on multiple sclerosis and how you can make the best of your diagnosis. Because a beautiful and fulfilling life is also possible with a chronic autoimmune disease like multiple sclerosis. Here you will find information and strategies on how you can actively influence your life. I want to encourage you and show you what you can do yourself. For this purpose, I publish solo articles with my experiences on basic therapy, nutrition, traveling, working and family planning. In addition, I interview experts on a variety of topics related to living with MS as well as other patients living with the disease.

#150: Treating chronic smoldering inflammation: How far has research come? With Dr. Boris Kallmann 01/21/2026

#150: Treating chronic smoldering inflammation: How far has research come? With Dr. Boris Kallmann 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: 💬 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. /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39804140

#149: What Your Mouth Reveals About MS. Prof. Dr. Ashutosh Mangalam on the Oral Microbiome and Future Therapies 01/14/2026

#149: What Your Mouth Reveals About MS. Prof. Dr. Ashutosh Mangalam on the Oral Microbiome and Future Therapies 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: 📌 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39670515

#148: Recognizing silent progression in MS with Prof. Dr. Heinz Wiendl 01/07/2026

#148: Recognizing silent progression in MS with Prof. Dr. Heinz Wiendl 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: 👉 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39625230

#147: Annual Review 2025 & Outlook 2026 12/31/2025

#147: Annual Review 2025 & Outlook 2026 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. 🔍 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 → German podcast archive → English podcast episodes → Episode on sleep / fatigue → Episode on pregnancy & MS → Newsletter sign-up → MS course waiting list (coming soon) About the host → ✉️ Connect with me I would love to hear what you wish for the English podcast in 2026. Send me a message anytime: Instagram: → Email: → ⭐ 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39570340

#146: What is Chronic Smoldering Inflammation in Multiple Sclerosis? With Dr. Klarissa Hanja Stürner 12/24/2025

#145: From Mental Health to Lifestyle Change: What Recent MS Research Means for Everyday Life. An ECTRIMS 2025 Special 12/17/2025

#145: From Mental Health to Lifestyle Change: What Recent MS Research Means for Everyday Life. An ECTRIMS 2025 Special 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: 🧠 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: 🔔 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39437710

#144: Accessible Adventures: How Kristen Turned a Wheelchair Journey into Empowerment 12/10/2025

#144: Accessible Adventures: How Kristen Turned a Wheelchair Journey into Empowerment 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: 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): 🌍 Rights on Flights – Report air travel incidents & join the movement: 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39259855

#143: How menopause impacts MS. Hormones, biomarkers, and what women need to know with Dr. Riley Bove 12/03/2025

#142: Digital rehab in MS – what new technology can (and can’t) do for you. An ECTRIMS 2025 Special 11/26/2025

#142: Digital rehab in MS – what new technology can (and can’t) do for you. An ECTRIMS 2025 Special 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: 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/39178125

#141: Navigating MS in Kenya: Faith, Advocacy, and Health Equity with Rev. Kipchirchir Kigen 11/19/2025

#140: How Real-World Evidence Is Shaping the Future of Multiple Sclerosis Treatment – Highlights from ECTRIMS 2025 11/12/2025

#139: Diagnosing Multiple Sclerosis: How the 2024 McDonald Criteria Help Doctors Recognize MS Earlier 11/05/2025

#139: Diagnosing Multiple Sclerosis: How the 2024 McDonald Criteria Help Doctors Recognize MS Earlier 🧠 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: 📚 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 Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/38921355

#138: Symptoms and Symptom Management – What New Research Means for People with MS. An ECTRIMS 2025 Special 10/29/2025

#137: Innovative MS Rehabilitation Approaches – Insights from ECTRIMS 2025 10/22/2025

#137: Innovative MS Rehabilitation Approaches – Insights from ECTRIMS 2025 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: 🧠 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 caregivers is crucial for the whole care ecosystem. -- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/38629910

#136: Cognitive Rehabilitation in MS – From Research to Everyday Relevance. An ECTRIMS 2025 Special 10/15/2025

#135: Let’s Talk About Vaginal Health and MS – What Women Should Know with Dr. Melika Arab Bafrani 10/08/2025

#134: Cognition and MS at ECTRIMS: Understanding and Managing Cognitive Decline 10/01/2025

#133: ECTRIMS 2025 MS Highlights: First Insights for Patients 09/25/2025

#133: ECTRIMS 2025 MS Highlights: First Insights for Patients Read the full blog article here: 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: See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my Click here for an 🔗 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 Initial Clinical Presentation and Comorbidities in Women with Multiple Sclerosis: A Comparative Study with Age-Matched Men. ECTRIMS 2025, Barcelona. Ultra-processed foods – Dalla Costa G. Association of Ultra-Processed Food Intake with Increased MS Disease Activity: Findings from the BENEFIT Trial. ECTRIMS 2025, Barcelona. Pediatric ozone exposure – Pugliatti M., Bergamaschi R., Pilotto A., Ghezzi A., et al. Exposure to ozone is associated with an increased risk of pediatric multiple sclerosis (pedMS): the PEDIGREE study. Abstract IMS25-LBA-176. ECTRIMS 2025, Barcelona. Ocrelizumab – Roos I. Real-world effectiveness of ocrelizumab in multiple sclerosis: a multi-registry observational cohort study. ECTRIMS 2025, Barcelona. /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/38352080

#132: Fighting for Fair Access. MS Treatments, and Global Challenges with MSIF's Anne Helme 09/24/2025

#131: Living with MS. Joke Soetaert on empowering youth, patient advocacy & life as a midwife 09/17/2025

#131: Living with MS. Joke Soetaert on empowering youth, patient advocacy & life as a midwife 👉 Read the full blog article here: 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 📬 Stay updated and receive tips, stories, and news directly in your inbox – sign up for the 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 was admitted, so both MRIs, brain and spinal cord were planned, along with other tests. On Monday I was admitted, and the first MRI was of my spinal cord. It already showed a fairly large white matter lesion. Because of that, I received the diagnosis of MS the same afternoon. It felt like the ground disappeared beneath my feet … People often say that after receiving a serious diagnosis, you only remember a small part of what the doctor tells you. I can definitely confirm that. The next day, the brain MRI turned out to be completely normal, I had no lesions. I also began another round of corticosteroids, three infusions. I was allowed to go home during the day because in my hospital the infusions are given at night. So two days after my diagnosis, I was with my boyfriend. We were in a relationship of about one and a half year. He suddenly told me that he couldn’t handle it anymore. He said he was afraid of the future, especially of the idea that I might end up in a wheelchair. It came completely out of nowhere. That actually overshadowed the diagnosis itself. For me, this was much worse. My whole future fell apart, and I had to completely rethink what my life would look like. It was very intense. I wanted to return to work right away, mostly for distraction and to be with my colleagues. But my neurologist gave me two weeks of sick leave. She called it “bereavement leave.” That week, on Friday, I had a resuscitation training course at a university hospital, and I didn’t want to miss that. But it turned out to be too much; the long hours of standing, listening, concentrating, not sleeping enough, not eating enough during the last 5 days. I fainted. Luckily, I was surrounded by anesthesiologists, emergency doctors, midwives, and nurses, so I was in the best hands. But it showed me how important it is to take some time to recover. What changed the most for you after being diagnosed – in your mindset, your lifestyle, or your approach to work? Joke: Wow, a lot changed for me after my diagnosis. Before, I was kind of… lazy. I didn’t really have a clear goal in life. I just made sure I could get through each day, but my free time wasn’t really dedicated to anything. I knew it was healthy to move and exercise, but it didn’t happen very often. After my diagnosis, of course, I immediately started reading some scientific articles about exercise, mindset, nutrition, sleep, stress and all those things. And that helped me shift very quickly. During the two weeks of “bereavement leave,” I already started thinking about what I could do with this new reality. I quickly realized I didn’t have fatigue or really limiting symptoms, so I started gathering knowledge immediately. And now, six years later, I can say that I try very hard to make a difference for myself in all these areas. The overarching factor, of course, is mindset. I was able to step out of the victim role quite quickly, which is often not easy. By looking at it from a different perspective, I could even see very early on the opportunities that my MS diagnosis could bring. A few months later, I already started thinking about how I could find a place in the MS world, how I could be meaningful, not just for myself, by gaining more knowledge, feeling better, and meeting peers, but also for the wider MS community. At work, I felt very supported by my colleagues. I think it also helped that they work in the medical field. They asked thoughtful questions, which I really appreciated. After those two weeks, I returned to work in the neonatal unit. I had to lift a baby and I told my colleague, “Wow, thankfully I’m in the neonatal unit, because here you only lift half of the weight of healthy newborns!” That was my first joke, and it set the tone. I often made jokes about it at first, and after a while, it didn’t really matter anymore and it didn’t occupy my mind as much. But that was very important in my process, giving myself, and my colleagues, the space to talk about it. How did your medical background influence the way you understood and processed your diagnosis? Joke: Yes, in my eyes, it had a huge impact. Normally, I like to know everything, especially about a topic I understand or that’s my area of expertise. But leading up to my MS diagnosis, when I was considered at risk, I didn’t look much into it because I was convinced I wouldn’t get it. I was absolutely certain of that. Of course, I was completely wrong, and the diagnosis really hit me hard. But I picked myself up and immediately started reading and learning. Because I could grasp the knowledge fairly easily, I quickly had space to explore the psychological side of processing a diagnosis. We can actually speak of it as a kind of living loss, it’s a loss of the life you knew until that moment, a life without worries in that area. And you don’t expect that you’ll need to make adjustments or be flexible in certain parts of your life. Now, six years later, it turns out that it hasn’t really been the case at all in my situation. I haven’t had to make any adjustments. I still work full-time, early mornings, days, evenings, and night shifts, including weekends and holidays. And those can be very tough, but that’s the case for all my colleagues. So I don’t really experience any extra burden. Even in terms of sports and physical activity, I’ve actually improved, I used to do almost nothing, and now I exercise a lot. Since my diagnosis, I also took on several challenges: we climbed part of Mont Blanc, I ran a half marathon, and I walked 80 kilometers, the entire Belgian coastline in just one day. And my mindset has evolved enormously, which I find very fascinating and I am very grateful for that. 2. Patient Expert & Scientific Involvement You’ve been involved in scientific research since 2019. What has it been like to participate so actively in MS-related studies? Joke: Yes, that’s correct. While I was looking up information about MS, I came across some scientific studies that I was eligible to participate in, and I jumped in without hesitation. The first study was about walking fatigue, and it went really well. The researcher was very kind and immediately made me feel comfortable, and that’s basically how it continued. So far, I’ve participated in more than ten studies, and it’s always been a very positive experience because of the great contact with the researchers. They are passionate people, and we shared that enthusiasm. I was also able to help them connect with other people with MS, and I was always very interested in everything behind the studies, including the results afterwards. I find that very fascinating. I’ve taken part in studies in Belgium and also in the Netherlands. I definitely recommend it. You get to see your own results, but also the group results and the differences within the group, often comparing people with MS to healthy control groups. In some studies, you also get the chance to try out different kinds of equipment, which is very interesting. How does being both a patient and part of scientific projects shape your view of MS? Joke: Being so involved in scientific research and participating in these studies gave me a really good feeling right away. It showed me that many researchers are working on MS every single day. A large group is looking for new and better treatments, but in my case, the studies were always about the impact of exercise or cognition for example. Knowing that this kind of research is happening is very hopeful. They have already discovered a lot about what can have a positive effect for people with MS and how people with MS can be supported. Studies often show that certain interventions, like following an exercise program, can even have a bigger impact on people with MS than on the healthy control group. For example, if someone wants to start cycling, walking, or running - even if it’s harder for people with MS because of the condition or because lower general fitness - they often see greater improvements in many areas than someone without MS following the same program. So the gains can be bigger, even if the effort is also greater. And even if the final result is sometimes still less than the average healthy person, it doesn’t really matter. What matters is the healthy impact it has on your body, your heart, your blood vessels, and your overall health. This has given me a lot of inspiration. I feel supported and part of a community, and I know that many people are working on this. Things aren’t standing still. And that feeling is really comforting. What role should people living with MS play in research and medical decision-making? Joke: People with MS naturally play a crucial role in research, because without participants, many studies would not be possible. It’s also important to have a variety of participants, depending on the purpose of the study or the eligibility criteria. But diversity in age, gender, background, and ethnicity is very important, because there can be differences in how a body responds to something, or how certain parameters develop, both regarding MS and general health. Nowadays, researchers are also increasingly focusing on starting from the perspective of people with MS. This means that we get more and more opportunities to be involved in other aspects of a study, to help shape it from the very beginning. For example, we can participate in discussions about whether a certain topic, intervention, or medication should be studied. Usually, patients who have received specific training can be part of this process. There is, of course, a lot of paperwork involved in research, like consent forms, where participants are clearly informed about what will happen, the potential risks, who to contact, and that their data will be handled anonymously. Patients can review these forms and suggest improvements, for instance, if certain sentences are too difficult to understand, or if the information could be presented in simpler language. They can also help highlight what is most important for patients. Another area where patients can contribute is in supporting participant commitment. Some studies last for months, requiring participants to follow certain procedures correctly for the results to be valid. Patients can provide advice on how to keep motivation high and how to engage both people with MS and healthy participants who are willing to dedicate to the study. Even after the study is completed, trained patients can give feedback on the results or help interpret them. Sometimes participants are informed about what was discovered, what wasn’t, or what was expected but didn’t turn out as predicted. This feedback can help guide future research, tailored to the group of participants and healthy controls. So, we are increasingly involved in the entire research process, which I find incredibly interesting and empowering. Without my diagnosis, I would have had no connection to MS. But now, it has sparked my interest, become a passion, and I can make a difference because my perspective can be valuable to others. It’s really rewarding, it’s a way of collaborating to gain more knowledge about MS. People living with MS should also play an active role in medical decision making. Their experiences and perspectives are crucial for making healthcare decisions that truly meet the patients’ needs. 3. Empowerment & Youth Advocacy As coordinator of the youth division at MS-Liga Vlaanderen, what are the goals and core values of your work? Joke: Yes, I have been a volunteer for about four years now, I’m the coordinator of the Youth Division at MS Liga Vlaanderen, which is the patient organization for people with MS. We focus on young people up to 35 years old and their surroundings. These are some of our goals: We want to start from the needs of young people with MS. What do they need? What challenges do they face? Where can we make a difference? We want them to feel that they are not alone and that there is a place where they can turn with their questions, concerns, or simply for relaxation and connection. In addition, we believe it is very important to provide accurate and understandable information so that young people feel stronger and can take control of their own lives. Empowerment is a key word for us. Why is a dedicated space for young people with MS so important? Joke: Young people, so in our case, up to 35 years old, have a very different life world compared to slightly older people. Occasionally, very young children are diagnosed with MS, but we haven’t met them at our activities yet. The youngest people we usually see are teenagers. Sometimes there’s a teen who is still in school. They are thinking about studying, about what job they want in the future, and getting a diagnosis like MS can bring a lot of uncertainty, fear, and stress. They are often looking for stories from others who, for example, are working in their dream job, and want to know if that is possible and how. Of course, everyone’s experience is different, and you can’t predict it. My idea is that at that moment, you should just pursue your dreams. If things become more challenging later, you can adjust, but it would be a shame to give up on an active dream job just because of the fear for future fatigue or mobility issues. Many of our members are in their early twenties, building their lives, starting their first jobs, entering relationships. We also have young parents, young moms and dads, and we often organize monthly activities that are family-friendly, where they can bring their little children. This gives families a chance to enjoy activities together and, for the children, to meet other kids who have a parent with MS. That can be very enriching when they are a bit older. Over the years, MS has less impact on life thanks to better medication, faster diagnoses, and improved supportive therapies like physiotherapy, occupational therapy, … . So fortunately, the impact of MS is becoming smaller. Many recently diagnosed people are very active and want to keep doing active things. MS no longer fits the old image where you automatically end up in a wheelchair. Of course, some people still experience that at a young age, but fortunately it’s less common. There’s also a big difference when you compare the average age group of our members with groups of people in their sixties, seventies, or eighties, those people often have had MS since before modern medication existed. So there’s such a big difference. I remember one of my first fears when I tried to meet other people with MS: How would they be? Would everyone be in a wheelchair? Would everyone complain or be negative? But when I joined the youth division, some young people did use wheelchairs, crutches, or walkers, but you quickly stop noticing that because the group was so positive. Often, the activities weren’t even about MS. Of course, there was space to talk about it, but it was mostly about life, current challenges, and supporting each other. There’s so much inspiration within the group, and it’s wonderful to see. Can you share a moment that shows how your work empowers others? Joke: I think this happens in different ways and on different levels. Sometimes young people come to us and say things like: “Three years ago, I attended your youth conference for the first time. I was completely overwhelmed, but I could see how passionate you all were. And how passionate the MS experts were in presenting information, in the most accessible way possible, trying to inspire us.” And since then, they’ve taken steps. They feel much better. They’ve also attended other activities, met people. People often keep in touch outside the activities, and many friendships continue beyond our events. We also really try to encourage young people to take control of their own care, to take that empowering role. For example, when it comes to information about MS, like a new treatment, we encourage them to be well-informed when talking to their doctor, to really engage in the conversation, and to practice shared decision-making which means looking at the aspects that matter most to you. For instance: I want my treatment to be as effective as possible, or I want to go on a world trip, so it’s important that my medication allows me to do that. Or: I really don’t like going to hospitals, so I’d prefer something I can do at home. And you should also build the best team of MS professionals around you, starting with your neurologist. I often hear young people say: “I barely know my neurologist’s name, because I see him or her so rarely. And I don’t think they know that running is my hobby, or that I’m concerned about having children, or that managing life with my two toddlers at home can be challenging.” All aspects of life matter. If your doctor doesn’t know about these things, how can he or she then provide the best care for you? So we strongly encourage young people: if it’s not a good fit with your doctor, find someone else. You’ll have MS for life, and while there may not be a cure yet, it’s important to find a doctor with whom you really form a team. Someone who supports you and helps you pursue your goals and live your life as fully as possible. It’s also a bonus if the relationship is pleasant and comfortable, so you can even discuss awkward or personal things. In that... /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/38236890

#130: Living with MS Abroad: A Conversation with Robert Joyce on Research, Resilience and Life in Spain 09/10/2025

#129: Hope for Myelin Repair: How Stem Cells Could Change the Future of Progressive MS with Dr. Luca Peruzzotti Jametti 09/03/2025

#128: AI-driven reclassification of Multiple Sclerosis – A new way of understanding MS 08/27/2025

#127 – What We’re Learning About Podcast Impact: Reflections from the German Audience 08/20/2025

#126: From MS Diagnosis to GregoryAi. Bruno’s Journey Through aHSCT and Innovation 08/13/2025

#126: From MS Diagnosis to GregoryAi. Bruno’s Journey Through aHSCT and Innovation 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: 🧭 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 – 💡 Gregory AI (Main Site) – 📚 Bruno’s Blog – 🎓 Polytechnic University of Lisbon (ESCS) – #120: 💬 Want to support or collaborate with Bruno? He’s especially interested in hearing from researchers, neurologists, clinical data experts, and digital health developers who want to help optimize GregoryAI for wider use in MS and other chronic conditions. Lately I am active on and , always with the same handle @brunoamaral. --- A heartfelt thank you to Bruno for sharing his story, his vision, and his courage. We truly hope this episode reaches researchers and innovators who can help advance GregoryAI—and that Bruno, in turn, finds the support he needs to continue improving the tool and one day take part in a successful study for myelin repair. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/37793695

#125: The MS Brain Health Strategy: Treatments, Cognitive Tools & Patient Empowerment with Prof. Barbara Willekens 08/06/2025

#125: The MS Brain Health Strategy: Treatments, Cognitive Tools & Patient Empowerment with Prof. Barbara Willekens 📖 Read the full blog interview here 👉 🎙️ 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 next breakthrough in MS treatment 🔥 Memorable quotes: “You can still have brain health—even with MS.” “Stopping smoking would be my number one advice.” “Being diagnosed with MS today is completely different than 20 years ago.” 👩‍⚕️ About my guest: Prof. Barbara Willekens is a neurologist and senior MS specialist at Antwerp University Hospital. She is also a clinical researcher focusing on advanced therapies, brain repair, and multidisciplinary MS care. 🔗 Follow her on or search her work on 📌 Resources mentioned: MS Brain Health Strategy: Linked episodes on smoking, cognition, and family planning – see blog post for direct links! See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my Click here for an /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/37627905

#124: Multiple Sclerosis Clinical Trials – Discover the Benefits, Ease the Worries 07/30/2025

#124: Multiple Sclerosis Clinical Trials – Discover the Benefits, Ease the Worries 🔗 Full blog post: (Update with your actual URL) 🔗 Useful Links for Exploring Clinical Trials: 🌍 Global Trial Search (ClinicalTrials.gov): 🇪🇺 EU Clinical Trials Register (EU CTIS): 🎧 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 awareness can be overcome with the right support Participation isn't just about receiving treatment — it’s about shaping the future of care 🧠 Bonus Insight: Using AI to Navigate Clinical Trial Searches Both ClinicalTrials.gov and EUClinicalTrials.eu can be tricky to navigate. AI can help by: Simplifying medical terms Guiding you through the filtering process Helping you understand inclusion/exclusion criteria Preparing questions for your healthcare provider or study contact ⚠️ Note: Always verify AI-assisted info with official sources or professionals. AI is helpful, but not infallible. 💬 Quote from the Episode “You only have one life and one body. And sometimes, it’s better to take action than to wait for someone else to come up with the answers.” 📢 Share Your Story Have you ever taken part in a clinical trial for MS, NMOSD, or MOGAD? Or are you considering it? I'd love to hear from you. Sharing your experience could help others feel more confident, informed, and empowered in making their own decisions. 🎧 Tune in now — and discover whether clinical trials might be a step forward for you. Your body. Your decision. Your journey. /episode/index/show/57b3fd31-0692-417f-a1e7-997041db4bcd/id/37600180

#123: Living with MS & Making a Difference. Claudia’s Journey of Fundraising, Resilience, and Hope 07/23/2025

#122: Living with MS in South Africa. Insights from Advocate & MSSA Vice-Chair Christelle Taute 07/16/2025

#121: TheMay50K, and mental strength – a conversation with Susanne Melanie Schmid 07/09/2025

MS-Perspektive – the Multiple Sclerosis Podcast

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