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From Insight to Action: Bridging the MS experience gap
27.08.2025Over a million people live with multiple sclerosis (MS) in Europe today, a condition that is debilitating, complex, and varied in how people experience it. And yet, there remains a stark gap between what policies and research deliver and what patients truly experience. The European Multiple Sclerosis Platform (EMSP) is working hard to close this divide through two powerful initiatives: the Impact of Multiple Sclerosis Symptoms (IMSS) survey and the Multiple Sclerosis Community Advisory Board (MS CAB).
These 2 projects support EMSP’s mission to ensure people living with MS are not only heard but meaningfully involved in shaping research, care, and policy.
The IMSS survey: Listening to over 17,000 voices
The IMSS survey, one of the largest of its kind in Europe, captured responses from more than 17,000 people with MS across 22 countries. The results are striking! On average, people reported living with nearly 14 symptoms at the same time, many of which, like fatigue, pain, cognitive impairment, and bladder issues, remain invisible yet deeply disruptive to daily life.
Key findings include:
- Delayed diagnosis and treatment: The average time to diagnosis is 3.2 years, with nearly 1 in 5 waiting over 6 years to start treatment.
- Mental health strain: Young people with MS (18–35) report the highest levels of anxiety and depression, yet services remain fragmented or inaccessible.
- Workforce exclusion: 1 in 4 people with MS are unable to work, despite most being diagnosed during their prime working years (18–50).
- Inequity in care: Many people face barriers related to cost, distance, and uncoordinated care. Despite seeing 4 different healthcare providers and using an average of 5.6 treatments, only 52% are satisfied with their symptom management.
The findings show that MS is not a one-size-fits-all condition. And yet, systems often treat it as such. We need personalised, multidisciplinary, joint, and equitable care models, and we need to design interventions that start with real patient insight.
How is EMSP actively nurturing expert patients to bridge this gap?
That’s where the MS Community Advisory Board (MS CAB) comes in. MS CAB is a coalition of experienced patient advocates and activists from across Europe, united by a shared mission to transform MS research and treatment development. Combining deep scientific understanding with real-world patient expertise, the MS CAB serves as a vital bridge between the MS community and the organisations working to develop treatments for people with MS.
A recent MS CAB consultation was conducted with the EBV-MS project team, a European clinical trial investigating a promising treatment approach targeting the Epstein-Barr virus in MS. The MS CAB members met with researchers to provide critical feedback on the design of Phase 2b clinical trials. Researchers and expert patients discussed everything from trial participation risks and consent forms to patient-relevant outcomes and how to improve communication. The result? A trial design that’s more ethical, accessible, and aligned with what patients actually need and experience.
Bridging the gap: Why it matters to EMSP
The IMSS survey reveals a reality that many people with MS already know: our systems often fail to reflect the lived experience of MS. And this disconnect has consequences: late diagnoses, inaccessible care, unmet mental health needs, and policies that don’t truly work for people.
But through MS CAB, EMSP is aiming to flip the script. By nurturing a well-informed, diverse group of expert patients, EMSP ensures that policy, practice, and innovation are grounded in reality. When patients are not just consulted but included as equal partners, we don’t just get better research, we get faster treatments, more effective care, and a better quality of life to people living with MS.
What’s Next?
EMSP is integrating the IMSS findings into its advocacy strategies and continuing to expand MS CAB’s impact across Europe. Future CAB consultations are being planned with researchers, as a standard for how all MS research should be done and not the exception.
To learn more about MS CAB or to organise a consultation, visit: https://emsp.org/projects/ms-cab/
