Listening to our community: what you told us about living well with MS

Last year, we invited our community to complete our survey, Your Voice, Your Story: Shaping Hope in 2025. Through the survey you shared your experiences of living with MS, using the Overcoming MS Program, and the support you need to live well. 

Thank you to everyone who took part. Your feedback is helping us to continue to understand what matters most, where gaps in support remain, and how we can better meet the needs of people living with MS.  

In response to what you told us, we’re focusing on three key areas: 

1. Strengthening support to help people make realistic, sustainable lifestyle changes.  
2. Improving our symptom-based resources, with a stronger focus on lifestyle support. 
3. Working with healthcare professionals so more people can access trusted lifestyle support. 

You told us lifestyle can help, but support needs to be realistic

Many people told us that healthy lifestyle changes have made a meaningful difference to how they manage their MS. In the survey, 92% of respondents said that healthy lifestyle changes, such as those recommended by the Overcoming MS Program, had made it easier to manage the symptoms of their MS. One in five said these changes had made it “extremely” easier. 

We also saw that people who reported following more pillars of the Overcoming MS Program tended to report better quality of life. Those following five to six pillars had significantly higher quality of life scores than those following one to two. 

This is encouraging, and it supports what many people in our community tell us: that lifestyle can play an important role in helping people feel more informed, hopeful and able to take positive steps for their health. 

However, we need to be careful about what this finding means. The survey shows a link between following more pillars and reporting better quality of life, but it does not prove that one caused the other. Some people may find it easier to follow more of the Program because they feel well enough, have more support, or have fewer symptoms. That’s why we are gathering more feedback over longer periods of time, including follow-up data from our courses, so we can better understand what helps people live well with MS. 

Your responses also reinforced that making lifestyle changes is not always simple. Almost half of people said there are lifestyle changes they would like to make but cannot. The barriers people described included fatigue, mobility issues, lack of support and dietary challenges. 

This feedback is helping us improve how we support behaviour change in a way that feels realistic and manageable. As part of this, we are expanding and improving our Change Your Life, For Life pillar, with a focus on practical support that works for real life with MS. 

You told us symptoms affect everyday life – especially fatigue

One of the clearest messages from the survey was that MS symptoms continue to have a significant impact on daily life. Fatigue was the most commonly reported symptom, affecting over half of people who replied. Mobility issues were also frequently reported, followed by bladder problems and numbness or tingling. 

For many people with MS, this will not come as a surprise. Fatigue can be one of the most difficult symptoms to explain to others, and one of the hardest to work around. It can affect plans, routines, relationships, work and the ability to make healthy lifestyle changes. 

Your responses showed us how important it is that support for people with MS is practical, realistic and rooted in lived experience. It also reinforced the need for more symptom-focused information that recognises the day-to-day realities of MS. 

That’s why we’re reviewing, updating and strengthening the symptom-based resources on the Overcoming MS website, ensuring they are practical, evidence-based and relevant to the challenges people with MS face most often. Throughout 2026, we’ll also be running our hot topics webinar series, exploring common MS symptoms and sharing expert insights, practical strategies and community experiences. 

You told us lifestyle support is still missing from many MS conversations

Another important finding was that many people are still not having conversations about healthy lifestyle choices with their healthcare professionals. Only 16% of survey respondents strongly agreed that their healthcare professional discusses healthy lifestyle choices with them in relation to managing their MS. 

This does not mean healthcare professionals do not care. Many work under huge pressure and have limited time in appointments. But it does show that there is still a gap in holistic MS care. 

This is an important part of Overcoming MS’s work. We are continuing to invest in healthcare professional engagement, including the development of education for healthcare professionals and our presence at key conferences and events. By sharing evidence, community insight and practical resources, we are working to help make lifestyle support a more routine part of MS care. 

You told us you want research, hope and real stories

The survey also helped us understand why people come to Overcoming MS. Respondents told us they come to us to learn more about research, learn about healthy lifestyle, feel more hopeful and be inspired by others. 

This feedback reinforces the importance of sharing regular research updates in accessible ways, including through blogs, podcasts and webinars. We are continuing our work with PIF TICK, an independent quality mark for health information, so you can feel confident that our information is clear, reliable and trustworthy. 

It also reminds us how powerful personal stories can be, not as simple “success stories”, but as honest reflections of the different ways people live well with MS. We will continue to share community experiences and develop new webpage sections showing what people with MS say about different aspects of the Program. 

You told us the Program matters, and we know we must keep improving

We were encouraged to hear that many respondents would recommend the Overcoming MS Program to others. On average, respondents gave a score of 7.9 out of 10 when asked how likely they would be to recommend the Program, with 44% giving the highest possible rating of 10 out of 10. 

This tells us the Program is valued, but positive feedback does not mean our work is done. Your responses have shown us where we need to keep improving, from making resources easier to find, to offering more practical symptom support, and helping people overcome barriers to lifestyle change. 

Help us turn listening into action

Your feedback is already shaping our work and will guide how we improve our information, develop our services and continue to listen. This survey is not the end of the conversation, but part of an ongoing process of learning and improving.  

As a charity, we rely on donations to keep offering trusted, evidence-based information, practical support and a hopeful community for people affected by MS. 

If you value our work and are able to give, please consider making a donation today. Your support can help us reach more people with the information and confidence they need to live well with MS. 

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