The ECTRIMS Podcast

How much do the labels used to describe multiple sclerosis actually reflect the lived experience of people affected by the disease?

In this first episode of the new ECTRIMS–MS Journal collaboration series, host Dr. Anneke van der Walt, Controversies Editor at the Multiple Sclerosis Journal, speaks with Jon Strum, MS caregiver and host of the RealTalk MS podcast, and Kathryn Smith, patient advocate and volunteer with the National MS Society, and person living with MS.

Together they explore a deceptively simple question: does the label given to an MS disease course actually matter?

Jon argues that disease labels shape perception, communication and expectations for people living with MS and their families. Kathryn explains why those same labels increasingly fail to capture the day-to-day reality of living with the disease.

They discuss:

• Why traditional MS disease course labels can feel disconnected from lived experience
• The emotional and practical impact of terms such as relapsing-remitting and secondary progressive
• The concept of PIRA (progression independent of relapse activity) and what it reveals about MS progression
• Why functional outcomes and patient experience should play a greater role in how MS is described
• The importance of patient voice in research, clinical conversations and scientific publishing

Although they begin from opposing viewpoints, Jon and Kathryn ultimately arrive at a shared conclusion: the MS community may need a new language — one that better reflects biology, individual experience and the realities of living with the disease.

Note: This episode is part of the MS Journal Controversies in MS series, specifically its new Controversies: Patient Voice section – a dedicated space highlighting the lived experiences of people affected by MS. Please see the following articles for more information:

• "Yes" – The label does matter
• "No" – The label does not matter
• Commentary

Rehabilitation is more than exercise – it is a personalised process of learning and adaptation that empowers people living with MS to maximise independence, participation and quality of life.

In this episode – recorded at ECTRIMS 2025 in Barcelona during the joint ECTRIMS–RIMS meeting – host Brett Drummond speaks with Prof. Roshan das Nair from SINTEF and Dr. Blanca de Dios Pérez from University of Nottingham about the evolving role of rehabilitation in MS care.

They explore:

· Why rehabilitation should be integrated from diagnosis

· The rise of vocational rehabilitation and supporting people to remain in work

· Mental health as a core component of MS care

· Digital technologies for cognitive screening and personalised triage

· The importance of implementation — turning research into real-world care

· Moving toward a "community of care" model beyond the clinic

As MS care advances, rehabilitation remains essential for translating medical progress into meaningful everyday outcomes.

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This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

Clinical trial results unveiled today at ACTRIMS Forum 2026 suggest that fenebrutinib may be a novel and effective treatment option for people living with primary progressive multiple sclerosis. In this exclusive episode providing the first expert discussion of the complete dataset, FENtrepid trial leads Prof. Amit Bar-Or (University of Pennsylvania) and Dr. Stephen Hauser (University of California San Francisco) break down what the fenebrutinib results really show. Together, they explore:

• Why BTK inhibition is uniquely positioned to address progressive MS biology
• How fenebrutinib compared to ocrelizumab in the Phase 3 FENtrepid PPMS trial
• What the data suggest for patients with non-relapsing, chronic disease

Listen for a deep dive into the science and the clinical implications.

Editorial Note: At 21:49, the discussion refers to Müller cells. The correct term is Kupffer cells.

Download the transcript

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This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

What role does the gut microbiome play in multiple sclerosis — and how close are we to translating microbiome research into meaningful clinical interventions?

In this episode of the ECTRIMS Podcast, host Brett Drummond is joined by Mahesh Desai (Luxembourg Institute of Health) and Ashutosh Mangalam (University of Iowa), two internationally recognised leaders in microbiome and MS research, to explore how gut microbes influence disease susceptibility, progression, and immune regulation in MS.

The discussion moves beyond simple "good vs bad bacteria" narratives, highlighting why microbial function, community structure, and host–microbiome dialogue are far more informative than individual taxa alone. The speakers examine evidence from animal models and human studies, including twin studies, microbial networks, and immune markers such as IgA coating, to understand whether microbiome changes are drivers or consequences of disease.

They also explore the potential of the gut microbiome as a predictive biomarker, the challenges of causality, and why diet and personalised approaches may be key to restoring immune balance in MS.

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This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

Cognitive change is one of the most common—and most misunderstood—symptoms of multiple sclerosis. In this episode, host Brett Drummond is joined by Dr. Vicki Levitt (Columbia University) and Dr. Tom Fuchs (MS Center Amsterdam) to explore why cognition remains one of the biggest unmet challenges in MS care.

Although problems with memory, attention, information processing speed, and executive function affect many people with MS, cognitive symptoms are often overlooked in routine clinical practice. The conversation examines why current assessment tools are not widely used, the barriers to implementing cognitive screening in busy clinics, and why measuring cognitive change is becoming increasingly important as treatments continue to improve physical outcomes.

From practical challenges in the clinic to cutting-edge research shaping the future, this episode explores how better measurement, earlier detection, and more personalised approaches could help protect one of the outcomes that matters most to people living with multiple sclerosis.

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This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

At every stage of the MS journey, nurses are the steady link between patients, families, and the healthcare team.

In this episode, host Brett Drummond speaks with Amy Perrin Ross, MS Specialist Nurse and Program Coordinator at Loyola University Chicago (USA), and Miguel Ángel Cortés-Vicente, Multiple Sclerosis Consultant Nurse at CEMCAT – Centre d'Esclerosi Múltiple de Catalunya (Spain), about the evolving role of MS nurses — from care coordination and patient engagement to leadership in research and innovation.

They share insights from the 2025 ECTRIMS Congress Nurse Sessions, exploring how nurses are advancing health literacy, supporting shared decision-making, and integrating AI to improve patient care.

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This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

While much of MS care focuses on physical symptoms, mental health challenges—like depression, anxiety, loneliness, and stigma—often go under-recognised.

In this episode, host Brett Drummond speaks with Dr. Rebecca MaGuire, psychologist and MS researcher at Maynooth University, who also lives with MS herself. Together they discuss why mental health must become a core part of MS care, what the latest research reveals, and how clinicians and communities can better support emotional wellbeing throughout the MS journey.

This podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases, Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

Patient Community Day 2025 set a new attendance record, highlighting the growing desire among people living with MS to connect with experts leading the charge in understanding the disease and advancing effective treatments.

After the event wrapped up in Barcelona, host Brett Drummond caught up with Julie Petrin, Director of Impact and Evaluation at MS Canada and a person living with MS, and Non Helena Smit, CEO of MS South Africa, to reflect on key takeaways and share what they're looking forward to at next year's event in Toronto.

This podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases, Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

Can damaged myelin be repaired in people living with multiple sclerosis? Results from the CCMR-Two clinical trial presented at ECTRIMS 2025 offered promising new evidence for remyelination using a combination of metformin and clemastine.

Straight from his late-breaking presentation in Barcelona, trial lead Dr. Nick Cunniffe of the University of Cambridge joins host Brett Drummond to explain what the results mean, what researchers are learning about the biology of myelin repair, and the next steps towards developing future remyelination therapies for MS.

This podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases, Bristol Myers Squibb, Novartis, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.

What were the biggest developments in multiple sclerosis treatment at ECTRIMS 2025? As the 41st Congress came to a close in Barcelona, attention turned to new clinical trial results and what they could mean for the future of MS care.

Dr. Sharmilee Gnanapavan, Consultant Neurologist at Barts Health and Princess Alexandra Hospital NHS Trust (UK), joins host Brett Drummond to unpack the key treatment takeaways from ECTRIMS 2025, the research worth watching, and what the MS community can look forward to as the Congress heads to Toronto in 2026.

Sponsorship Disclosure: This ECTRIMS podcast episode is supported by an educational grant from Alexion, AstraZeneca Rare Diseases. Bristol Myers Squibb, Roche, Sanofi, and UCB. Educational grant providers have no input into the podcast series content.