Your AccountPeople with MS report an average of 13.7 symptoms, yet only half are satisfied with how they are managed: EMSP’s IMSS study, published in the Multiple Sclerosis Journal
09.09.2026Led by the European Multiple Sclerosis Platform (EMSP), the study explores the experiences of people living with multiple sclerosis (MS) and offers valuable insights into the symptoms they face, the impact these may have on daily life, and the ways in which individuals seek support and manage their condition.
Bridging an important gap
The IMSS study was designed to further explore the day-to-day experiences of people living with MS and thus address an important gap in MS research. While advances in research continue to improve our understanding of disease activity, progression, and disability, less attention has been given to the broader range of symptoms that can affect people’s quality of life.
To address this, the IMSS survey collected responses from 17,151 people with MS across 22 European countries. By gathering the perspectives of people with MS across Europe, the IMSS helps build a deeper understanding of symptom prevalence and severity, how symptoms affect daily life, approaches to symptom management, and access to and satisfaction with care.
What did we find?
The findings underline the wide-ranging and often complex nature of MS symptoms and their impact on everyday life. 99% of respondents reported at least one symptom, with an average of 13.7 symptoms per person. The most reported symptoms included fatigue, sensory problems, sleep disturbances, cognitive impairment, and balance problems.
The study identified important gaps in care. Although 87% of respondents reported using some form of strategy to manage their symptoms, only 50% were satisfied with their symptom management. People consulted an average of 4.2 healthcare professionals, yet only around half reported experiencing coordinated care.
Many people with MS continue to face challenges in finding the support and care that best meets their needs. It highlights the importance of looking beyond disease activity alone and considering the broader factors that influence well-being and quality of life. There is an urgent need for a deep review of the current health care systems to offer comprehensive, coordinated, and person-centred MS care.
Why this research matters
Studies such as IMSS are important to ensure that the experiences and needs of people with MS inform discussions about healthcare, research priorities, and policy development that will affect their life.
By bringing together insights of thousands of people with MS across Europe, IMSS contributes to a growing evidence base of unmet needs that can support more person-centered approaches to MS care. It also serves as a reminder for researchers, healthcare professionals, and policymakers to understand MS not only as a neurological condition, but as an experience that can affect many aspects of daily life.
For the European MS Community, the publication of this study represents an important contribution to ongoing efforts to promote care, research, and advocacy that reflects the real-work experience.
The message is clear: managing MS is more than controlling disease activity. It is about addressing the symptoms and challenges that affect people’s lives every day.
We would like to thank the national MS societies across Europe and the patients that supported the data collection and contributed their perspectives to this study as well as the experts who contributed to designing the survey and the authors of the publication.
Read the full IMSS study in the Multiple Sclerosis Journal
Learn more about IMSS Study: https://emsp.org/projects/impact-of-multiple-sclerosis-symptoms-imss/
