Press Release: Invisible symptoms leave people with MS underserved and unheard, new findings show

Brussels, May 16, 2025 – The European Multiple Sclerosis Platform (EMSP) has released the Impact of Multiple Sclerosis Symptoms (IMSS) survey, shedding light on critical gaps in the healthcare and social support systems for people living with multiple sclerosis (MS) across Europe. The survey is one of the largest patient-reported symptoms survey conducted in Europe gathering insights from over 17,000 people living with MS.

Conducted with 24 national MS societies across 22 European countries, the survey reveals that people with MS face persistent delays in diagnosis, barriers to accessing treatment and care, and a lack of coordinated, holistic care.

“The IMSS survey provides critical real-world evidence on the challenges people with MS face every day,” shared Elisabeth Kasilingam, EMSP CEO.  Access to timely diagnosis, effective treatment, and coordinated care are all critical to improving the lives of over 1 million people living with MS across Europe. We must act now to ensure systemic changes in MS care.”

“This survey reveals critical healthcare gaps for people with MS, with 90% diagnosed during their prime working years and only 52% receiving well-coordinated care,” quoted Dr. Daphne Kos, principal investigator on the IMSS project and Professor in Rehabilitation at KU Leuven and the National MS Center Melsbroek, Belgium. “This underscores the urgent need for enhanced healthcare practices and research to improve diagnosis, treatment, and support for those affected.”

Key findings

• Diagnosis:
  • 90% of people with MS were diagnosed between the ages of 18 and 50, during their prime working years.
  • The average delay from appearance of first symptoms to diagnosis was up to 3 years, hindering timely intervention.
• Barriers to care:
  • 23% of people with MS reported never being offered that symptomatic care to manage their symptoms.
  • 19% of people with MS reported affordability as the reason for not receiving symptomatic care.
• Invisible symptoms such as fatigue, cognitive impairment, and sensory issues are among the most debilitating for people with MS. However, these symptoms are often overlooked, leading to unsatisfactory care and widespread dissatisfaction among those affected.
• Workplace and social barriers: 1 in 4 people with MS are unable to work due to MS.
• Lack of coordinated care: People with MS see an average of 4 healthcare professionals but only 52% report that their care is well-coordinated, leading to gaps in treatment and management.

The IMSS findings reveal a critical crisis demanding immediate intervention across healthcare, policy, and society to secure essential support for people living with MS. This includes promoting social inclusion through measures such as destigmatisation, accessible and adapted workplaces, inclusive education and community programs, ensuring equitable access to care and services, and shaping policies that reflect the diverse realities of people living with MS.

Professor Peter Feys, principal investigator on the IMSS project and Professor in NeuroRehabilitation Sciences, University of Hasselt, Belgium added “The IMSS survey documented that functioning in persons with MS is impacted by a large(r) number of symptoms (than thought), already in first years after diagnosis. It is a call for action as prevalent invisible symptoms as fatigue or cognitive impairment, or even balance confidence are not yet addressed adequately across Europe.”

EMSP, alongside its member organisations and partners, is calling for immediate action to address the critical gaps in MS care across Europe to improve the quality of life and outcomes for people living with MS:

• Timely diagnosis and early intervention – Reducing diagnosis delays and ensuring early access to treatment can significantly improve long-term outcomes.
• Equitable access to care – Policymakers and healthcare providers must remove financial and administrative barriers to MS treatment and services.
• Comprehensive and personalised care – Healthcare systems must take a holistic, patient-centered approach, including mental health support, rehabilitation, and lifestyle interventions.
• Stronger care coordination among professionals – Close collaboration between multidisciplinary healthcare providers is essential to ensure seamless, consistent care and improved symptom management.
• Workplace and social Inclusion – Employers, educational institutions, and governments must implement policies that support people with MS to remain in the educational system and the workforce – participating fully in society.
• Increased awareness on invisible symptoms – MS is more than mobility challenges; greater public and healthcare provider awareness is needed to ensure all symptoms are recognised and addressed, especially ones that are invisible to the eye.

The IMSS survey is a wake-up call to policymakers, healthcare providers, and society at large. By addressing the systemic gaps highlighted in the findings, we can create a more inclusive, equitable future for everyone living with MS across Europe.