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

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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

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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.

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Hear you soon and try to make the best out of your life, Nele

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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.

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Hear you soon and try to make the best out of your life, Nele

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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.

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• Maybe you already use your phone, a wearable, or one of the many MS-related apps to track your symptoms or support your daily routines. But when it comes to rehabilitation, the real question is: which digital tools actually help — and which ones are just noise?

In this ECTRIMS session, researchers from around the world explored how technology can enhance rehabilitation for people with MS. Their message was clear: digital tools can open new doors, but only when they are designed well, grounded in science, and truly support your everyday life.

You can read through the complete article here: https://ms-perspektive.de/EN/142-digital-rehab

In this episode, you'll hear about: 1. Alon Kalron – Israel

How digital technologies—from smartphones to sensor-based rehab tools—can extend what your rehab team can see and support between appointments.

2. Andrea Tacchino – Italy

Why digital outcome measurements matter, how sensors can capture real-life changes, and what it takes to turn raw data into meaningful digital biomarkers.

3. Gabriele Perachiotti – Italy

How high-intensity, task-oriented circuit training can improve balance, fatigue, and quality of life—even in people with severe mobility limitations—and how a simple home-based telerehab setup helps maintain progress.

4. Andrea Baroni – Italy

How machine-learning models can predict rehab outcomes and why your starting functional level is the strongest predictor of future improvement.

5. Diogo Haddad Santos – Brazil

Why "strange" visual symptoms in MS often reflect real, measurable eye-movement changes—and how portable eye-tracking may become a new digital biomarker.

6. Katrin Parmar – Switzerland

Which balance tests reflect high-tech lab measurements, and why static and dynamic balance need to be tested separately.

Topics we explore:

• The promise and limits of MS apps & wearable sensors

• Digital biomarkers for gait, balance, fatigue, and vision

• Task-oriented training and telerehabilitation

• Predicting rehab outcomes using machine learning

• Eye-tracking and the hidden world of visual symptoms

• 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.

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See you soon and try to make the best out of your life, Nele

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👉 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)

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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

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🧠 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.

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See you soon and try to make the best out of your life, Nele

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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.

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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 caregivers is crucial for the whole care ecosystem.

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