MS-Perspektive - The Multiple Sclerosis Podcast

https://ms-perspektive.de/en/190-unseen-faces-of-ms/Living with multiple sclerosis often means experiencing symptoms that others cannot see. Austrian artist Gabriela Romagna shares her journey to an MS diagnosis, how creativity helps her process her experiences, and why she started "(un)seen faces of MS." Through colourful portraits and personal stories, her project raises awareness of the diverse and often invisible realities of MS.

Read the full interview on the MS-Perspektive blog: https://ms-perspektive.de/en/190-unseen-faces-of-ms/

In this episode, we talk about:

• Gabriela's journey from her first symptoms to her MS diagnosis.
• Living with sensory overload, numbness and vision changes.
• Choosing a treatment that fits her life.
• Using art to express experiences that are difficult to put into words.
• How "(un)seen faces of MS" works and how to participate.
• Sharing personal stories while respecting privacy.
• Balancing creativity, community and personal needs.
• Her hopes for nerve repair and future MS research.

Links and resources

• Gabriela's website
• Gabriela on LinkedIn
• Gabriela on Instagram: @a.r.t.story
• Gabriela's Behance portfolio
• Illustrator Camila Rosa
• World MS Day

Related podcast episodes

• #006: Interview with Tania Pilz about the international MS-Community Austria and more
• #186: Protecting nerve cells in multiple sclerosis with Prof. Manuel Friese

Chapters

00:00 Introduction 00:45 Getting to know Gabriela 02:19 The road to an MS diagnosis 10:03 Coming to terms with MS 11:35 Living with invisible MS symptoms 13:23 Choosing an MS treatment 15:24 Art, creativity and processing the diagnosis 18:47 Bringing "(un)seen faces of MS" to life 21:25 Creating portraits beyond appearance 24:32 Sharing personal stories with care 25:26 How to join the portrait project 26:58 Balancing art, community and health 28:14 Hopes for MS research and nerve repair 28:58 Where to find Gabriela and get involved 29:50 Gratitude and final thoughts 31:32 Outro and a preview of the next episode

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.

How could new imaging in MS help us understand progression and develop better treatments?

In this episode, I explore key insights from Daniel Reich's MSToronto2026 lecture and related research. Learn what paramagnetic rim lesions can reveal about chronic inflammation, why MRI findings and biological treatment effects may tell different stories, and how imaging could help identify who benefits from emerging therapies.

I also discuss tolebrutinib, the HERCULES trial, and the disappointment surrounding the US regulatory setback, alongside its EU authorisation and important safety considerations.

Topics include:

• Chronic inflammation and progression without relapses
• Paramagnetic rim lesions and the exploratory BRaKe-MS study
• Imaging biomarkers for better clinical trials
• Tolebrutinib: evidence, limitations, and treatment access

This episode is my interpretation of the lecture and research, rather than an interview with Daniel Reich.

Research and resources

• Corresponding blog article von MS-Perspektive: https://ms-perspektive.de/en/189-daniel-reich-ectrims-2026/
• HERCULES trial: tolebrutinib in non-relapsing secondary progressive MS
• Chronic active MS: research connecting imaging with tissue biology
• A mechanism-driven framework for MS progression
• European Medicines Agency: Cenrifki / tolebrutinib
• Sanofi's December 2025 announcement on the FDA decision

---

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.

"Get rid of MS as soon as possible and make ourselves superfluous." — Jan van Amstel

What can a stronger European voice achieve for people living with MS? In episode #188, EMSP President Jan van Amstel shares his personal motivation and priorities for his four-year presidency. We discuss unequal access to care, why patient experiences matter, and how European cooperation can support change.

In this episode:

• Access to diagnosis, treatment, rehabilitation and support

• Cooperation between national MS societies

• Research, patient data and the potential of AI

• Financial independence and good governance

• Involving younger people in MS advocacy

Chapters: 00:45 Opening and personal background 04:52 The four-year presidency 06:10 The role of EMSP and its member societies 11:08 Policy, health economics and access 16:39 Data, evidence and political arguments 20:28 Collaboration with MSIF and international partners 24:09 Governance, leadership and continuity 26:36 Future of MS advocacy in Europe

Links and resources:

• Read the full interview: https://ms-perspektive.com/188-jan-van-amstel-emsp

• European Multiple Sclerosis Platform (EMSP)

• Membership Capacity Building

• MS Barometer

• Impact of Multiple Sclerosis Symptoms (IMSS)

• EBV-MS

• IMMUTOL

• WISDOM

• More-EUROPA

• MS International Federation (MSIF)

• International Progressive MS Alliance

• World MS Day

• Young People's Network (YPN)

Related episodes:

• #176: Tim Coetzee on progressive MS research — find the episode in the podcast overview

• #131: Joke Soetaert on youth advocacy and patient involvement

• #006: Tania Pilz on the international MS community in Austria

---

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.

Aging in multiple sclerosis brings new questions about relapses, gradual progression and treatment choices. In episode 187, Dr. Yi Chao Foong, an MS neurologist and researcher in Tasmania, explains why fewer relapses do not necessarily mean that MS has stopped changing.

We discuss:

• What changes in the aging immune system and what PIRA means.
• Why late-onset MS needs careful diagnosis and individual treatment decisions.
• Why stopping treatment can carry risks despite years of stability.
• How rehabilitation, practical support and social connections can support independence.
• What future biomarkers might add to treatment monitoring.

Explore Dr. Foong's research and listen to episode 49 with Anthony Feinstein on CogeX. Further study links are included in the accompanying blog article.

Links and resources

• Read the interview and listen to episode 187 on the blog: https://ms-perspektive.de/en/187-aging-in-ms-yi-chao-foong/
• Dr. Yi Chao Foong — MS Australia
• Aging better with MS — research project
• Late-onset MS treatment study
• Ocrelizumab versus interferon/glatiramer acetate in people over 60
• DISCOMS trial
• DOT-MS trial
• Clinically silent MRI lesions and treatment escalation
• National Disability Insurance Scheme — Australia
• Episode 049: CogeX study with Prof. Anthony Feinstein
• English podcast archive
• Twitter / X: @Foongahh
• Bluesky: @ycfoong.bsky.social
• LinkedIn: Yi Chao Foong suchen
• ORCID profile — Dr. Yi Chao Foong
• University of Tasmania profile and publications

Chapters

00:00 Episode introduction 00:45 Introducing Dr. Yi Chao Foong and aging in MS 03:29 Why aging matters 04:36 The aging immune system and PIRA 06:56 Late-onset MS: diagnosis and treatment 08:55 Higher-efficacy treatment in older people 10:53 Stopping treatment: risks and uncertainties 13:59 Why silent MRI lesions matter 14:47 Personalizing treatment decisions 16:30 Extended interval dosing and de-escalation 18:00 Lifestyle, brain health and practical support 19:52 Supporting independence 22:39 Biomarkers and future monitoring 24:38 Hopes for prevention research 25:47 Takeaways for people with MS and families 26:49 Following Dr. Foong's research 27:37 Farewell

---

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.

Why can multiple sclerosis progress even when relapses are well controlled? In episode 186, I speak with Prof. Manuel Friese about the next challenge in MS research: protecting nerve cells from damage and preserving function over time.

Read the full interview on my blog: https://ms-perspektive.de/en/186-manuel-friese/

Manuel is a neurologist and clinician scientist who directs the Institute of Neuroimmunology and Multiple Sclerosis in Hamburg. His team's research explores why some nerve cells withstand inflammation while others degenerate. One unexpected finding was a protective role for complement factor H inside neurons, beyond its familiar role in regulating the immune system.

We discuss how smoldering inflammation can keep nerve cells under stress, why oxidative damage matters and how ferroptosis, an iron-dependent form of cell death, fits into the picture. Manuel explains possible ways to strengthen the cells' own defenses and why getting a promising mechanism into a treatment remains a major challenge.

We also talk about alpha-lipoic acid, the Octopus trial and the importance of careful clinical testing. Early research signals can be encouraging, but they do not yet prove that a treatment safely slows disability progression.

Table of contents

• Opening & introduction
• Understanding neurodegeneration in MS
• The new discovery: Complement factor H
• From discovery to potential therapy
• The bigger picture: Protecting the brain in progressive MS
• Looking ahead
• Closing

Introduction: Who is Prof. Manuel Friese?

Prof. Manuel Friese: I'm a clinician scientist based in Hamburg, Germany, and I direct an institute for neuroimmunology and multiple sclerosis. The main focus of my research nowadays is to understand why progression in MS happens. That is also why we want to understand in much more depth how nerve cells react to inflammation. It is not so much about how inflammation occurs in the central nervous system. I think we have a fairly good understanding of that, but we still have not understood why neurons die.

This extract has been edited for readability.

Links and resources

• INIMS: follow the team's research
• Prof. Manuel Friese's UKE profile
• Study: Intracellular complement factor H protects neurons during CNS inflammation, Nature, 2026
• Related paper: STING orchestrates the neuronal inflammatory stress response in multiple sclerosis
• Octopus interim results: alpha-lipoic acid moves to the next stage
• Octopus trial information
• Manuel Friese's research post on LinkedIn

Related episodes

• #146: Chronic smoldering inflammation in MS with Dr. Klarissa Stürner
• #148: Recognizing silent progression in MS with Prof. Heinz Wiendl
• #050: The future of MS treatment with Prof. Tjalf Ziemssen

Time stamps

• 00:32 Episode introduction
• 00:45 Opening & introduction
• 03:39 Understanding neurodegeneration in MS
• 15:14 The new discovery: Complement factor H
• 25:36 From discovery to potential therapy
• 31:55 The bigger picture: Protecting the brain in progressive MS
• 37:35 Looking ahead
• 39:41 Closing
• 41:11 Where to follow Manuel's research
• 42:02 Next episode and farewell

The contents are for information and do not replace individual medical advice.

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.

An MS diagnosis can depend on where you live, whether you can reach a neurologist and how quickly you can get an MRI. In this episode, Nele speaks with neurologist and neuroimmunologist Dr. Enrique Gomez Figueroa about the gaps in MS care across Mexico. Enrique explains why official case numbers may miss people, what delays diagnosis and why access to an effective treatment can require a lengthy approval process. He also shares what research on switching therapies can tell us—and why listening to people with MS is essential.

In this episode:

• Why MS may be underdiagnosed in parts of Mexico
• Barriers to diagnosis and distinguishing MS from NMOSD and MOGAD
• Differences between treatments available on paper and in practice
• When moving to a more effective therapy may be needed
• How research, patient voices and advocacy can improve access

Links and resources

1. Read the full interview and blog post – https://ms-perspektive.de/185-ms-in-mexico/
2. Atlas of MS: Mexico factsheet
3. Enrique Gomez Figueroa's publications on PubMed
4. Enrique Gomez Figueroa on LinkedIn
5. MSBase study comparing treatment switches — einschließlich des Wechsels zu einer wirksameren Therapie
6. MEXCTRIMS guideline: part I and part II
7. 2024 revisions to the McDonald diagnostic criteria

---

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

For more information and positive thoughts, subscribe to my newsletter for free.

Click here for an overview of all podcast episodes published so far.

Read the full blog post and interview here: https://ms-perspektive.de/en/184-klaus-schmierer/

How early should MS treatment start, how strongly should we treat, and is there ever a point when it becomes "too late" to protect meaningful function?

In this episode, I speak with Prof. Klaus Schmierer, Professor of Neurology at Queen Mary University of London and honorary consultant neurologist at Barts Health NHS Trust, about MS treatment across the entire disease course. We look at the very beginning of MS, different treatment strategies, advanced disability, and the question of what can still be preserved at each stage.

In this episode, we discuss:

• why MS treatment should start as early as possible once the diagnosis is sufficiently secure
• why diagnostic accuracy remains essential, especially when MRI findings can be misleading
• what the AttackMS trial is investigating with very early high-efficacy treatment
• why the traditional escalation approach may sometimes allow avoidable damage to occur
• the difference between continuous treatment and immune reconstitution
• for whom immune reconstitution approaches may be particularly suitable
• how to balance treatment risks against the risks of insufficiently controlled MS
• why "mild MS" is difficult to predict reliably in an individual person
• why people with advanced disability are still underrepresented in MS trials
• what ChariotMS is investigating in people with advanced MS
• why arm and hand function can be crucial for independence even when walking is already severely limited
• why a high EDSS score alone should not automatically be a reason to stop disease-modifying treatment
• whether there may be several different treatment windows across the disease course
• which developments Klaus would like to see in the next five years, including better biomarkers, neuroprotection, repair and more equitable access to treatment

Klaus' key message is: treat early, think long-term and don't give up too soon.

Links & resources

Full blog post and interview: https://ms-perspektive.de/en/184-klaus-schmierer/

AttackMS – how early should we use highly effective DMTs? MS Society UK: https://www.mssociety.org.uk/research/latest-research/research-blog/attackms-how-early-should-we-use-highly-effective-dmts

ChariotMS – can cladribine slow worsening in advanced MS? MS Society UK: https://www.mssociety.org.uk/research/explore-our-research/search-our-research-projects/chariotms-can-cladribine-slow-worsening

#002: How can a rapid and clear MS diagnosis be made? https://ms-perspektive.de/en/002-diagnosis/

#179: Multiple sclerosis without the noise – Dominic Shadbolt https://ms-perspektive.de/en/179-dominic-shadbolt/

#125: The MS Brain Health Strategy with Prof. Barbara Willekens https://ms-perspektive.de/en/125-barbara-willekens/

#040: Autologous stem cell therapy (aHSCT) in MS with Prof. Roland Martin https://ms-perspektive.de/en/40-ahsct-roland-martin/

#049: CogeX study insights for progressive MS with Prof. Anthony Feinstein https://ms-perspektive.de/en/049-cogex-anthony-feinstein/

---

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.

Can we detect gradual MS progression before it becomes obvious?

In this episode, I look at what current research can — and cannot — tell us about subtle worsening without an obvious relapse.

The key distinction is important: noticing a change, detecting a trend, confirming progression and understanding its biological cause are four different steps.

We look at why a single clinic visit cannot prove irreversible progression, what the EDSS may miss, and how patient-reported outcomes and self-administered tests could help identify meaningful changes earlier.

I also discuss what MRI, OCT, neurofilament light chain (NfL), GFAP and newer approaches such as BrainAGE can add — and why none of them currently functions as a stand-alone "progression detector".

In this episode

• Why gradual worsening can occur without an obvious relapse
• Why one abnormal measurement does not prove progression
• What the EDSS may miss
• How patient-reported outcomes and self-administered tests can add important information
• The difference between PIRA and smouldering MS
• Why "independent of a recognised relapse" does not necessarily mean "independent of inflammation"
• What MRI, OCT, NfL and GFAP can — and cannot — tell us
• Why different biomarkers may give different answers
• Why repeated measurements over time matter more than one snapshot
• What people with MS can realistically observe in everyday life without constantly monitoring themselves

Read the full article

Silent progression in MS: Can we really detect it early? 👉 https://ms-perspektive.de/en/183-silent-progression/

Infographic: four steps towards confirming progression

Research papers behind this episode

Voigt I, Ziemssen T. Detecting progressing events in multiple sclerosis clinics in real-time is possible: No. Multiple Sclerosis Journal. 2026;32(6):570–572. https://doi.org/10.1177/13524585251409547 Key role in this episode: Why earlier detection is not the same as real-time confirmation of irreversible progression.

Reinders EM, Masot-Llima A, Otero-Romero S, et al. Assessing progression independent of relapse activity in multiple sclerosis using a patient-reported disability measure and self-administered neuroperformance outcomes. Annals of Neurology. 2026;100:525–546. https://doi.org/10.1002/ana.78275 Key role: Evidence from 9,088 people with MS showing that patient-reported and self-administered measures can capture clinically meaningful change, while only partly overlapping with EDSS-based PIRA.

Bsteh G, Dal-Bianco A, Krajnc N, Berger T. Biomarkers of progression independent of relapse activity—Can we actually measure it yet? International Journal of Molecular Sciences. 2025;26:4704. https://doi.org/10.3390/ijms26104704 Key role: Overview of EDSS, functional testing, MRI, OCT, NfL, GFAP and multimodal approaches, including the important distinction between predicting future PIRA and measuring ongoing progression.

Ciccarelli O, Barkhof F, Calabrese M, et al., MAGNIMS Study Group. Using the progression independent of relapse activity framework to unveil the pathobiological foundations of multiple sclerosis. Neurology. 2024;103:e209444. https://doi.org/10.1212/WNL.0000000000209444 Key role: Why PIRA is a useful clinical framework but not a single biological process, and why PIRMA is difficult to establish in routine care.

Pawlitzki M, Kirschner P, Masanneck L, et al. Brain age gap in multiple sclerosis: associated with disability but independent of serum biomarkers. Therapeutic Advances in Neurological Disorders. 2026;19:1–13. https://doi.org/10.1177/17562864261458516 Key role: An example of why different biomarkers may capture different aspects of MS rather than providing one universal measure of progression.

Kappos L, Wolinsky JS, Giovannoni G, et al. Contribution of relapse-independent progression vs relapse-associated worsening to overall confirmed disability accumulation in typical relapsing multiple sclerosis in a pooled analysis of 2 randomized clinical trials. JAMA Neurology. 2020;77(9):1132–1140. https://doi.org/10.1001/jamaneurol.2020.1568 Key role: Historical context for why relapse-independent disability accumulation became such an important topic in relapsing MS.

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 is the English translation and adaptation of my original German interview with Prof. Dr. Dr. Philipp Zimmer, first published in August 2023.

Prof. Zimmer is a sports scientist, neuroscientist and expert in exercise immunology. In our conversation, we explore how physical activity and structured exercise can influence multiple sclerosis, what happens in the immune system when we exercise, and why strength, endurance and balance training can all play an important role for people living with MS.

We also talk about fatigue, cognition, mobility, recovery and the question of how much exercise is actually helpful.

You will learn:

• how exercise can influence the immune system
• why natural killer cells and regulatory T cells are important
• which MS symptoms may benefit from regular physical activity
• why aerobic exercise is particularly interesting from an immunological perspective
• why strength and balance training also matter
• how much exercise is generally recommended
• why more exercise is not always better
• how recovery and individual adaptation influence training
• how people with MS can get started even if they have not exercised much before
• why enjoying your chosen activity is so important for long-term motivation
• where to find exercise ideas and evidence-based resources for different levels of mobility

Prof. Zimmer also explains why exercise is particularly valuable because it gives people with MS something they can actively contribute to their own health and wellbeing.

Please note that this interview was originally recorded and published in 2023. Research continues to evolve, so I have added current and internationally relevant resources to the accompanying blog article and link list.

The information in this episode is for educational purposes and does not replace individual medical advice.

Links and resources Blog article

Read the full English interview and accompanying resources on MS-Perspektive:

https://ms-perspektive.de/en/

Note: Please replace this with the final direct URL of the English Prof. Zimmer article once it has been published.

Original German interview

Wie Sport die MS beeinflussen kann mit Prof. Dr. Dr. Philipp Zimmer:

https://ms-perspektive.de/210-philipp-zimmer/

Prof. Dr. Dr. Philipp Zimmer

English profile at TU Dortmund University:

https://sport.kmst.tu-dortmund.de/en/institute/personnel/prof-dr-dr-philipp-zimmer/

WHO recommendations on physical activity

World Health Organization – physical activity recommendations:

https://www.who.int/europe/news-room/fact-sheets/item/physical-activity

Exercise and physical activity resources for people with MS

MS International Federation – Physical activity for people with MS:

https://www.msif.org/resource/physical-activity-for-people-with-ms/

MS International Federation / European Multiple Sclerosis Platform – Keep moving with MS:

https://www.msif.org/resource/keep-moving-with-ms/

MS Society UK – Simple exercises for MS:

https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/staying-active/simple-exercises-for-ms

Research

PubMed – Fitness, physical activity, and exercise in multiple sclerosis:

https://pubmed.ncbi.nlm.nih.gov/35084560/

Related English interviews and articles on MS-Perspektive

How exercise boosts your immune system: What people with MS should know with David Walzik:

https://ms-perspektive.de/en/153-exercise/

Multiple sclerosis and pain: How exercise and physical activity can help with Rasmus Christian Jungersen:

https://ms-perspektive.de/en/175-rasmus/

Movement limitations in MS – how to maintain strength, balance and mobility:

https://ms-perspektive.de/en/018-movement-limitations/

EBV insights: Shedding light on its impact on MS with Prof. Christian Münz:

https://ms-perspektive.de/en/52-christian-muenz/

German exercise consultation mentioned in the interview

DMSG Nordrhein-Westfalen – Sport-Sprechstunde:

https://dmsg-nrw.de/sport-sprechstunde/

Please note that this service is primarily aimed at the German-speaking MS community. International listeners may find the MSIF, EMSP and MS Society UK resources above more directly useful.

---

Until next time – make the most of your life, and ideally include some regular movement along the way. 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 is the English translation of my original German interview with Prof. Sigrid Arnade and Prof. Christoph Heesen, first published in April 2025. We explore what research currently tells us about stress and MS, where the evidence is still limited, and why psychological and social factors deserve a stronger place alongside biological aspects of multiple sclerosis care.

We discuss:

• how severe stress and traumatic experiences may influence MS risk and disease activity
• why everyday stress is so difficult to study scientifically
• the difference between traumatic events and chronic stress
• resilience, self-efficacy and empowerment
• stress-management interventions and psychotherapy
• gaps in current MS research
• practical strategies for coping with stress
• why MS care should follow a genuinely biopsychosocial approach

Useful links

• English blog article: https://ms-perspektive.de/en-181-stress/
• Original German interview and blog article: Stress und MS. Faktoren, Herausforderungen und Perspektiven
• Lebensnerv Foundation: www.lebensnerv.de
• Institute of Neuroimmunology and Multiple Sclerosis (INIMS), Hamburg: www.inims.de

"What is good for me, what is not good for me? And how can I strengthen the things that are good for me?" — Prof. Sigrid Arnade

---

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.