A guest blog from Register participant Jonathan marking twelve months since joining the Register’s PPIE group:
After living with Multiple Sclerosis for more than a decade, I reached a point where I knew I wanted not only to manage my own condition, but also to contribute to improving the lives of others living with MS. This led me to join the UK MS Register’s Patient and Public Involvement and Engagement group. The group brings together people with MS who work alongside researchers to shape studies, improve communication materials, and ensure that lived experience remains at the heart of MS research.
The group operate under the Terms of Reference set by the UK MS Register, which outline the group’s purpose and responsibilities. At its core, the PPIE group helps improve the Register by reviewing materials, advising on the usability of the online portal, and co-producing communications, questionnaires, and feedback tools to ensure they are suitable for people living with MS. The group also serves as a champion for the Register, supporting engagement and encouraging others to take part. With around 20 members, the Brainstormers meet monthly for an hour via Zoom and stay connected mainly through email. Members bring a range of skills, from writing and research to lived experience, and work together to ensure that the voices and views of people with MS shape the Register’s development and direction.
My involvement has allowed me to share my journey, support several research projects, and connect with others who are equally passionate about making a positive difference.
I was diagnosed with Multiple Sclerosis in 2011, at a time when my daily life, diet, and health were very different from where I am today. Back then, my diet consisted mainly of ultra-processed foods (UPFs), even though I believed I was eating reasonably well by following government guidance and including fruit and vegetables. Over the years, MS has increasingly affected my work, mobility, and quality of life. My symptoms included cognitive fatigue, inflammation, constipation, breathlessness, balance issues, persistent pain, and, at times, the need for a walking stick.
The turning point came during the early stages of the COVID-19 pandemic. Motivated by an urgent need to improve my health, I made significant lifestyle changes, reducing UPFs to a minimum, adopting a whole-food approach, and incorporating intermittent fasting. I also increased my physical activity, walking regularly and eventually completing a 50 km challenge in a single day as part of the MS Society’s May 50K in 2024. These changes led to a profound improvement in my health, including losing over four stone and a complete remission of the symptoms that once shaped my daily life. Today, I remain symptom-free, and my BMI is within a healthy range.
This personal transformation raised an important question: could the lifestyle changes that helped me also benefit others living with MS? Although my own experience is an n=1 study, it made me wonder whether reducing ultra-processed foods and incorporating intermittent fasting might have broader value. Coming from an occupational safety and health (OSH) background, I also became curious about how diet affects fatigue and performance, an area that rarely features in accident investigations but may deserve future attention.
With my growing interest in evidence and impact, I joined the UK MS Register’s Patient and Public Involvement and Engagement (PPIE) group. In the group, people with MS work together to make sure research stays rooted in real lived experience and that researchers focus on the questions that truly matter to our community.
Since joining the group in 2024, I have contributed to around half a dozen research studies, offering feedback on questionnaire design, reviewing draft materials, and helping researchers refine their ideas so they are more accessible and meaningful to people with MS. These activities have shown me how valuable and necessary the patient voice is throughout the research process. I estimate I have so far contributed around 30 hours of my time through monthly meetings, reviewing research materials, and supporting numerous studies.
One of the most rewarding aspects of the PPIE group has been meeting like-minded people who are not only living with MS, but who are actively committed to making a difference. Being part of a community of individuals who share this sense of purpose has been motivating, encouraging, and deeply reassuring.
Becoming involved has also opened the door to exploring new research possibilities. I have begun early discussions about a potential future project that may examine lifestyle approaches and how they influence MS outcomes, an area inspired directly by my own experience and the changes that have helped me regain my health.
Joining a PPIE group has been one of the most meaningful steps in my MS journey. It has allowed me to contribute to research, connect with others who share a passion for improving the lives of those living with MS, and explore ideas that might one day support others living with the condition. I recently shared on LinkedIn that the UK MS Register is a unique space where lived experience can guide real change.[1]
Using my experience and skills to help shape change gives me purpose, and I live by the belief that I have MS; MS doesn’t have me.
Dr Jonathan Backhouse MA MRes CFIOSH FHEA is a NEBOSH Diplomate, a Chartered Fellow of IOSH (CFIOSH), a Fellow of Advance HE (FHEA), and an occupational safety and health (OSH) pracademic with over 24 years of experience. Neurodivergent and living with long-term conditions, including MS, he brings lived experience to an inclusive, person-centred approach. He supports the MS community as a Patient and Public Involvement representative for the MS Society and the UK MS Register. In addition, he has volunteered with Institution of Occupational Safety and Health for over 15 years and now serves on its Research and Advisory Group. He is passionate about research, inclusivity, and helping people reach their full potential.
[1] https://www.linkedin.com/posts/jonathanbackhouse_mscommunity-activity-7399531771526008832-gLpM
