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

Living with multiple sclerosis means constantly making decisions beyond medication: about lifestyle, mental health, daily routines and support. Many people with MS ask the same question: What really helps — and what is actually supported by science?

At ECTRIMS 2025, six international experts presented new research on rehabilitation, wellbeing, lifestyle interventions and empowerment in MS. Together, their work paints a clearer picture of what is already evidence-based, what shows promise, and where important gaps remain.

This article brings all six perspectives together. It explains what was studied, what was found, what people with MS can realistically take from it today — and what the next steps in research and care will be.

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Table of Contents

1. Types of Mental Health (MH) and Psychological Well-Being (PWB) Rehabilitation Interventions and Their Effects

Presented by Christoph Heesen (Germany)

What was this presentation about?

Prof. Christoph Heesen opened the session by addressing a fundamental question: What actually works when we talk about mental health and psychological well-being rehabilitation in MS? Rather than focusing on a single intervention, his talk mapped the landscape of existing MH and PWB rehabilitation approaches, including psychotherapy, self-management programs, mindfulness-based interventions, and multidisciplinary rehabilitation.

A key emphasis was that mental health problems in MS are not secondary or optional issues – they are core symptoms that influence disease experience, participation, and quality of life.

What did the research show?

Across multiple studies and intervention types, moderate but meaningful improvements were found for:

  • Depression and anxiety

  • Coping skills and emotional regulation

  • Participation and self-efficacy

However, effects varied widely depending on how structured the intervention was, whether it was tailored to MS, and whether it was embedded in routine care rather than offered as a short-term add-on.

What does this mean for people with MS?

  • Mental health rehabilitation can help – especially when it is structured and MS-specific.

  • Psychological support is most effective when it is not crisis-driven but preventive and ongoing.

  • Feeling emotionally supported is not a “soft outcome”: it influences fatigue, adherence, and daily functioning.

What is clear – and what is not yet?

Clear: Mental health interventions belong in standard MS care.
Unclear: Which exact formats work best for whom, and how to scale them sustainably.

What comes next?

Future research will focus on:

  • Personalizing MH interventions

  • Combining psychological and physical rehabilitation

  • Embedding mental health support into long-term MS care pathways

2. Designing Well-Being Rehabilitation Trials With Future Implementation in Mind

Presented by Marcia Finlayson (Canada)

What was this presentation about?

Prof. Marcia Finlayson shifted the focus from what works to how we study it. Her talk highlighted a major gap in MS research: many well-being interventions show promise in trials but never make it into real-world care.

She argued that implementation should not be an afterthought – it must be built into trial design from the very beginning.

What did the research show?

Trials that consider real-life constraints – time, costs, workforce, and patient burden – are:

  • More likely to be adopted in practice

  • More inclusive of diverse MS populations

  • More sustainable over time

She emphasized the importance of outcomes that matter to people with MS, not just to researchers.

What does this mean for people with MS?

  • Research is slowly shifting toward interventions that are usable, not just effective on paper.

  • Your lived experience and priorities increasingly shape how studies are designed.

What is clear – and what is not yet?

Clear: Implementation-focused research leads to better access.
Unclear: How health systems will consistently fund and scale these interventions.

What comes next?

  • More pragmatic trials

  • Greater involvement of people with MS as research partners

  • Stronger links between research, clinics, and communities

3. Concealment of MS Diagnosis and Symptoms: Implications for Mental Health and Support Seeking

Presented by Rebecca Maguire (Ireland)

What was this presentation about?

Dr. Rebecca Maguire addressed a rarely discussed but deeply familiar issue: hiding MS. Many people with MS conceal their diagnosis or symptoms at work, in relationships, or even in healthcare settings.

Her work explored how concealment affects mental health, identity, and access to support.

What did the research show?

Concealment was associated with:

  • Higher psychological distress

  • Increased anxiety and depressive symptoms

  • Delayed or reduced help-seeking

At the same time, concealment was often a deliberate coping strategy to avoid stigma or discrimination.

What does this mean for people with MS?

  • If hiding MS feels exhausting, you are not alone – and it has real mental health costs.

  • Supportive environments make disclosure safer and less burdensome.

What is clear – and what is not yet?

Clear: Chronic concealment harms well-being.
Unclear: How best to support people in navigating disclosure decisions.

What comes next?

  • Development of disclosure-support tools

  • Workplace and societal stigma reduction

  • Integrating psychosocial support into routine care

4. Testing a Goal-Oriented, Personalized Holistic Well-Being Intervention: The Living Well Program for Progressive MS

Presented by Silvia Poli (Italy)

What was this presentation about?

Silvia Poli presented case studies from the Living Well Program, focusing on people with progressive MS. The intervention centered on personal goals, not predefined outcomes.

What did the research show?

Participants reported:

  • Improved sense of control and agency

  • Better alignment between care and personal priorities

  • Meaningful changes even without large clinical improvements

What does this mean for people with MS?

  • Progress is not only measured in scores – personal goals matter.

  • A holistic, goal-oriented approach can restore meaning and motivation.

What is clear – and what is not yet?

Clear: Personalized goals enhance engagement.
Unclear: How to scale such individualized programs.

What comes next?

  • Larger trials

  • Integration into multidisciplinary care

  • Adaptation for different MS subtypes

5. Territorial Implementation of a Nurse-Led Expert Patient Programme

Presented by Miguel Angel Robles Sanchez (Spain)

What was this presentation about?

Miguel Angel Robles Sanchez described a nurse-led expert patient program implemented across regions. The focus was empowerment through knowledge, skills, and peer support.

What did the research show?

Participants demonstrated:

  • Improved disease knowledge

  • Greater self-efficacy

  • Better health indicators and engagement with care

What does this mean for people with MS?

  • Nurses can play a central role in long-term MS support.

  • Peer learning strengthens confidence and autonomy.

What is clear – and what is not yet?

Clear: Empowerment-based programs work.
Unclear: How to ensure equal access across regions.

What comes next?

  • Broader implementation

  • Digital and hybrid formats

  • Long-term outcome evaluation

6. Sustained Benefits of a Multi-Domain Lifestyle Intervention: The LIMS Study (24-Month Follow-Up)

Presented by Arianne Gravesteijn (Netherlands)

What was this presentation about?

Dr. Arianne Gravesteijn presented long-term results from the LIMS study, examining a lifestyle intervention targeting diet, physical activity, sleep, and stress.

What did the research show?

Over 24 months, participants showed:

  • Sustained improvements in psychological impact

  • Reduced anxiety and fatigue

  • Improved BMI and waist circumference

  • Lasting changes in diet, sleep, and stress management

What does this mean for people with MS?

  • Lifestyle changes can have real, sustained benefits.

  • Small, realistic steps matter more than perfection.

What is clear – and what is not yet?

Clear: Multi-domain lifestyle interventions are beneficial.
Unclear: Which components drive the strongest effects.

What comes next?

  • Randomized controlled trials

  • Integration into standard care

  • Economic and process evaluations

Final Take-Home Message

Across all six presentations, one message was consistent: well-being in MS is multifaceted, modifiable, and worth investing in. Mental health, lifestyle, empowerment, and personalized goals are not extras – they are essential parts of living well with MS.

For people with MS, the future points toward care that is:

  • More holistic

  • More personalized

  • More grounded in everyday life

And while not all answers are in yet, the direction is clear: living well with MS is a realistic, evidence-informed goal.

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

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Nele von Horsten

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I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

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