UK MS Register News. Published 17/02/2025
In this guest blog, Register participant Annie shares her experience of joining PPI group ‘the Brainstormers’:
In 2006/7 I was diagnosed with primary progressive MS. I’m up for volunteering for anything that might aid the understanding and treatment of MS and I originally joined the MS Register in 2012, soon after its inception in 2011, at the suggestion of my then MS nurse. Since then, I’ve always completed all questionnaires in the hope that this might in some small way be helpful – perhaps not directly for me, but ultimately for other people with MS in the future. This isn’t altruism – being able to feel that I’m making my own small contribution towards a better understanding of MS IS helpful for me too. I can’t change the fact that I have MS, but I can try to do something useful with the experience.
I joined the Brainstormers in 2024, almost by accident. I’d contacted the MS Register after completing my usual questionnaires, because of a realisation that had come to me about how I was completing them. An earlier conversation with our vet about my elderly and ailing dog had made me realise that as my dog had gradually deteriorated over time, so my definitions of ‘normal’ had unconsciously shifted – to the point where I was inadvertently at risk of normalising and minimising quite serious problems. We’d made the sad decision to let Bruno go. It was his time. Thinking about all this over the next few months, it occurred to me that something similar might be happening when I completed the MS Register questionnaires. My deterioration is gradual, too, and as I live alone and no longer have face to face appointments with an MS nurse, I rarely receive feedback on how other people perceive my condition. Was it possible (likely?) that my definitions of my own ‘normal’ might have unconsciously shifted, leading me to normalise and minimise my own MS related problems? And if this was true for me, might it also be true for other people?
This prompted me to write to the MS Register, and from the resulting dialogue came an email from Register team member Ellie inviting me to join the Brainstormers. Ellie explained that the MS Register has its own PPI (patient and public involvement) group, which meets for an hour each month on Zoom. The group, she explained, is made up from people with MS from all over the UK and from a wide variety of backgrounds. Its aim is to help the work of the Register in lots of ways, including giving feedback on research proposals and commenting on Register communications to people with MS. The group had named itself ‘the Brainstormers’. Would I be interested in joining?
Age, MS fatigue, and the needs of my surviving old dog combine to make it difficult for me to get out and about like I used to do, so Zoom groups are ideal for me. And, without wishing to sound too superficial, I did think that ‘The Brainstormers’ is a pretty cool name! I’d recently finished one project, so was ready for another. After a Zoom chat with Ellie, when she explained more about the Brainstormers and answered my questions, I was ready to attend my first meeting in November 2024.
To date I’ve attended three Brainstormers meetings and I’ve found the group to consist of a mix of people with a range of symptoms and experiences. The meetings are ably chaired by Ellie, with occasional assistance from her dog, Loki. Members don’t have to attend every meeting, but so far the group seems to have been fairly consistent with about 12-14 people. That’s a good number – large enough to generate interesting discussions but no so large as to be intimidating. There’s space to speak or be silent, as you choose.
The meetings I’ve attended so far have involved discussion with researchers about their projects and feedback from group members about issues raised. Obviously, the discussions have not all been directly relevant to my experience as someone with PPMS, but I don’t think this matters. It’s been interesting to learn more about the research into MS that’s being undertaken, and to hear about people’s different experiences of this shape-shifting disease. It’s also been interesting to learn about people’s widely differing experiences of NHS provision for people with MS in different parts of the country.
I feel that there’s been new learning for me in attending the meetings – always a plus. It’s been interesting, and has helped me to feel that I am at least trying to make my own small contribution towards the understanding of MS and the care and treatment of people affected by it. This might only be a small contribution – but small contributions add up! So if you find an email from the Register team in your inbox with an invitation to become a Brainstormer, my advice would be to give it a go. Why not? It can’t hurt, and you might find it interesting and useful. And ‘the Brainstormers’ IS a cool name…