At this year’s ECTRIMS 2025 Congress, one of the most insightful sessions focused on Symptoms and Symptom Management in multiple sclerosis (MS).
While disease-modifying therapies often take center stage, these talks reminded the audience that living well with MS depends on much more than slowing disease activity — it’s also about managing day-to-day challenges like mobility, fatigue, cognition, and mental health.
Four researchers presented new findings that touch on the real-life experiences of people with MS: how symptoms evolve, how they affect work and independence, and how accessible key treatments really are.
Here are the highlights — and what they mean for the MS community.
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🧠 Cognitively Stimulating Activities in Multiple Sclerosis
Presented by Andreas Kirknæs Færk, Rigshospitalet, Copenhagen – ECTRIMS 2025
At this year’s ECTRIMS 2025 session Free Communications 1: Symptoms and Symptom Management, Andreas Kirknæs Færk presented a study exploring whether mentally engaging activities can help people with MS maintain or improve their cognitive health.
Why Cognitive Stimulation Matters
Cognitive issues like slower thinking, forgetfulness, and mental fatigue affect many people with MS. The idea of cognitive reserve suggests that the brain can stay resilient through education, stimulating work, and creative or social hobbies.
Activities such as reading, making music, painting, or learning something new are not only enjoyable but may also strengthen this mental flexibility.
What the Study Looked At
The Danish team invited 60 people with MS—most of them women, average age 51—to take part in a structured program of cognitively stimulating activities. Others continued their normal routines. The goal: to see if these activities would influence cognition, energy, and daily engagement.
Highlights from the Results
🧩 Activity levels rose significantly and remained high after 24 weeks.
🧠 Participants felt mentally sharper and more confident (subjective cognition improved).
📊 Objective test scores also improved slightly, though not enough to be statistically certain.
💡 Cognitive fatigue decreased, suggesting that mental engagement may also help reduce tiredness.
What It Means for the MS Community
Even without dramatic test-score changes, people felt better and more active in daily life. That matters.
The message is simple and empowering: keep your mind engaged—read, learn, create, connect. These small, meaningful actions can support both cognitive and emotional well-being.
Study Team
The research was led at Rigshospitalet – The Neuroscience Centre by the CRAMS team (Finn Sellebjerg, Helene Højsgaard Chow, Lisbet Marstrand, Mia Loft, Jakob Lindegaard Lund), with contributions from Victoria Leavitt and Carolyn Schwartz. Supported by the Scleroseforeningen (Danish MS Society).
Takeaway
Keeping your brain active through curiosity and creativity isn’t just a pastime—it’s part of living well with MS.
🧩 Tracking MS Progression Through Patient-Reported Outcomes
Presented by Sean Apap Mangion from the Department of Neuroinflammation, University College London (UCL) – ECTRIMS 2025
The second talk at the ECTRIMS 2025 Free Communications 1 session highlighted a powerful shift in MS research: putting patients’ own experiences at the center of disease tracking.
Researchers from UCL’s Department of Neuroinflammation explored how patient-reported outcome measures (PROMs) — specifically the MSIS-29v2 (physical impact) and MSWS-12v2 (walking ability) questionnaires — can help predict changes in disability over time.
What the Study Found
After one year, changes in these PROM scores were linked with disability progression measured by the EDSS-Plus scale at two years.
To strengthen the analysis, researchers tested a new composite measure, combining both PROMs using an “And-Or” model.
This approach achieved the best balance between accuracy (association with EDSS-Plus) and sensitivity (detecting meaningful patient changes).
Why It Matters
This study shows that patient-reported experiences can offer early clues about how MS evolves — potentially months before traditional clinical tests detect changes.
Such measures could be especially useful in remote monitoring and multi-arm adaptive trials (MAMS), where continuous feedback from people with MS helps identify treatment effects sooner and more efficiently.
Takeaway for the MS Community
Your voice matters — literally.
The way you describe your symptoms, mobility, or fatigue can help researchers and doctors spot early signs of progression and evaluate new treatments faster.
It’s a reminder that patient perspective is not just data — it’s essential insight.
💼 Symptom-Related Risk Factors for Early Retirement in MS
Presented by Mathia Kirstein (MS Register, Germany | UK MS Register | NARCOMS USA) – ECTRIMS 2025
The third talk, delivered by Mathia Kirstein, focused on an important and often overlooked aspect of life with multiple sclerosis: employment and early retirement.
Even people with mild disability and shorter disease duration can face challenges staying in work — with major consequences for income, daily structure, and quality of life.
Why This Research Matters
Employment plays a vital role in mental health, social participation, and financial security. Yet, MS symptoms can interfere long before severe physical disability sets in.
Understanding which symptoms are most linked to early retirement could help tailor interventions that keep people active in the workforce longer.
The Study
Using data from three major MS registries — the German MS Register, the UK MS Register, and the North American NARCOMS — the research included over 4,900 participants aged 18–65 with mild disability (EDSS < 4) and disease duration ≤ 15 years.
Two groups were compared:
Early retirees: those unable to work or working only limited hours due to MS.
Controls: people with MS still employed full- or part-time, matched by age, sex, and disease course.
Key Findings
Across the registries, several symptoms consistently predicted early retirement:
Depression
Walking difficulties
Cognitive difficulties
Pain
Vision problems also showed an effect in some analyses.
Higher disability scores and lower education levels further increased risk.
Meta-analysis across the three registries confirmed these trends, especially for depression, cognitive impairment, and walking difficulties — each significantly associated with leaving work early.
What It Means for the MS Community
This research highlights that even invisible symptoms such as fatigue, cognitive changes, and mood can have a profound impact on people’s working lives.
Supporting mental health, pain management, and cognitive rehabilitation — alongside physical therapy and workplace flexibility — could make a real difference in helping people remain employed longer.
The Bigger Picture
The study also underlined the protective effect of higher education, which may provide more resources and flexibility to adapt to challenges at work.
Future research will explore whether symptomatic treatment, access to care, and disease-modifying therapies (DMTs) influence employment outcomes.
Takeaway
Staying in work with MS isn’t just about mobility — it’s about supporting the whole person. Addressing depression, cognition, and pain early on can help maintain both well-being and independence.
💊 Access to Symptomatic Treatments in MS: Trends in France (2017–2023)
Presented by Marie Mainguy, Université de Rennes – ECTRIMS 2025
The final presentation by Marie Mainguy shed light on an often-overlooked aspect of MS care — access to symptomatic treatments that help manage daily symptoms like spasticity and walking difficulties.
While disease-modifying therapies (DMTs) aim to slow disease progression, many people with MS also depend on treatments that improve function and comfort in everyday life.
Background
Two such therapies are widely used in MS management:
Botulinum toxin (BoNT) injections — an evidence-based treatment to reduce spasticity (muscle stiffness), improving mobility and quality of life.
Fampridine — an oral medication that can enhance walking speed and stability, prescribed for people with moderate walking limitations (EDSS 4–7).
Both have been proven effective, but how equally are they available across France?
Study Aim and Design
The research team analyzed data from the French national health insurance system (SNDS), which covers 99 % of the population.
They examined records of over 130,000 people with MS between 2017 and 2023, looking at:
how many received BoNT or fampridine,
how treatment rates evolved over time, and
whether geography, sex, or social factors influenced access.
Key Findings
📈 Low overall use: Only 3.2 % of patients received BoNT and 7.9 % were treated with fampridine, despite the high prevalence of spasticity and walking impairment in MS.
🗺 Regional disparities: Some areas showed much higher use than others, but these differences weren’t fully explained by available healthcare indicators.
👩⚕️ Specialist dependency: BoNT must be administered by rehabilitation medicine experts, while fampridine requires neurologist prescription and follow-up walking tests — both of which limit access.
👥 Who is most likely to receive treatment:
People aged 40–79 and those with longer disease duration were more likely to be treated.
Access differences between men and women were small but present (BoNT use: 2.3 % women vs. 4 % men).
Interpretation
The findings reveal a concerning gap between treatment availability and patient need.
Many people living with MS experience spasticity or mobility problems but do not receive these effective symptomatic treatments — often due to limited specialist access, healthcare organization, or time constraints for neurologists.
What This Means for the MS Community
Access to rehabilitation and symptom-targeted care matters just as much as access to disease-modifying drugs.
Addressing logistical barriers and expanding specialist training could ensure that more people benefit from treatments that directly improve daily life.
Next Steps
Marie Mainguy and her colleagues are now extending their analysis to include other anti-spasticity drugs (like baclofen) to build a broader picture of symptomatic treatment patterns in France.
Takeaway
Spasticity and walking issues are treatable — but only if access is guaranteed.
This study highlights the urgent need for equitable, region-wide availability of symptom-relief therapies, so that all people with MS can live more comfortably and independently.
✨ Closing Thoughts
These studies not only advance scientific understanding — they also reflect the dedication and creativity of a new generation of researchers who are deeply attuned to the real-world challenges faced by people with MS.
Their work reminds us that progress in MS care depends as much on empathy and collaboration as it does on data and technology.
See you soon and try to make the best out of your life,
Nele
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