REFUEL-MS: re-energising treatment for fatigue

Fatigue is one of the most common invisible symptoms of MS. But less than a third of people with MS experiencing fatigue have been offered treatments for this symptom as part of their routine care. 

REFUEL-MS aims to help people manage their fatigue day-to-day. It’s an app-based digital treatment that will help people develop personalised ways of managing their fatigue. For example by incorporating physical activity into their routines. Researchers hope it could become part of standard NHS care for people with MS in the future. 

Professor Rona Moss-Morris, Chief Investigator, tells us what inspired REFUEL-MS.

Currently, there’s no single effective medication to treat fatigue in MS. Some people do find certain medications helpful, but there’s no evidence from clinical trials that these are effective for treating fatigue. And, trials of fatigue specific behavioural and exercise interventions look much more promising. But research has shown that less than 10% of people with MS who experience fatigue were offered behavioural or exercise treatment.

That’s where the inspiration for REFUEL-MS came from. We felt it’s important we use our research and clinical expertise to ensure that people get access to these more evidence-based treatments.

Pearla Papernik, Research Assistant, tells us about why working with people affected by MS is so important.

“An important focus of REFUEL-MS is that the programme can be introduced into the NHS one day. We do a lot of co-production, having people living with MS involved in all aspects of our work. That means we can make sure the programme is acceptable to people who access it and they find it easy to use and helpful. And we also work with healthcare professionals to understand how we can best integrate it into the NHS.

One part of the project I’m really excited about is using insights we learn from our ongoing research to improve our app. We’re interviewing people living with MS, loved ones, and healthcare professionals. When we spoke to people affected by MS, many said they find it difficult to talk about fatigue to others. There’s a lot of stigma and misunderstanding about fatigue, such as it being the same as just being tired. So it can be difficult to explain fatigue and to access support sometimes. We want part of the programme to focus on this.”

Liv Tamburro, Research Assistant, tells us about how the team prioritises diversity.

“We want to make sure what we’re doing is relevant and accessible to as many people as possible. That’s why we’re making sure we speak with people who are under-represented in MS research. For example, people from minoritised cultural and ethnic backgrounds.

Right now, we’re creating a first prototype of the app. It’ll be really exciting to see this once it’s finished. And it’s amazing to think that one day it could be available to people with MS through the NHS.”