REFUEL-MS: An app for managing fatigue in multiple sclerosis

Fatigue stands out as one of the most prevalent and challenging symptoms in MS, affecting overall quality of life. Unlike normal tiredness, MS-related fatigue is an ongoing state of exhaustion that does not subside with rest. It affects physical abilities, concentration, memory, and decision-making processes. More than 90% of individuals living with MS experience this fatigue, significantly impacting their work, social life, and leisure activities.

Despite this overwhelming statistic, only a third of people who experience fatigue are offered treatment. The evidence shows that non-drug approaches to fatigue management, such as exercise, balance, and cognitive behavioural therapy (CBT), have promising results for reducing fatigue for people living with MS. And yet, these treatments are not reaching enough people. In a recent survey of over 4,000 people with MS, only 13% of the people experiencing fatigue were offered a non-drug treatment within the NHS. Effective treatment of fatigue for people living with MS remains a top priority.

Introducing REFUEL-MS

The REFUEL-MS research programme aims to fill this gap by developing a digital treatment for fatigue management, and reducing barriers to care for people living with MS. The fatigue treatment will be in the form of an app and include a combination of exercise, balance, and CBT techniques to help reduce MS-related fatigue. There will be flexibility within the app, so people living with MS experiencing fatigue can select which areas they would like to focus on first to address their fatigue. For example, there is the option of starting with the cognitive behavioural sessions to help create daily routines to manage the impact of fatigue. We hope that healthcare professionals will also provide personalised guidance to those using the app, and that it will become part of routine care in the NHS at the end of the programme.

With the generous funding of over £2.6 million from the National Institute of Health and Care Research (NIHR) and the MS Society, we are on a mission to develop an effective, accessible, and inclusive treatment to help those living with MS manage fatigue.

Our King’s team and the role of the Patient Advisory Group

Our programme is led by a team of dedicated researchers and professionals at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London. Professor Rona Moss-Morris is our Chief Investigator, and Harriet Waine is our Programme Manager. We also have a team made up of Post-Doctoral Research Associates, including Hannah Proudfoot, Sophie Fawson, and Federica Picariello; Research Assistants including Hiba Adan, Nimmy Sidhu, and Emma O’Connor and MSc students, Sanjana Prabhakar and Pearla Papiernik-Berkhauer.

Our Patient Advisory Group (PAG) and collaborators have been instrumental in shaping REFUEL-MS. Their invaluable insights have guided key decisions, and their personal experiences have been pivotal in tailoring our approach to meet the real needs of individuals living with MS.

Our collaborators

We are fortunate enough to working with leading experts from around the country. We have methodological co-investigators at King's, including Dr Sam Norton, Dr Barbara Barret, and Health Economist James Shearer from the IoPPN, and Alexandra Politt from the Policy Institute. We have also partnered with Dr Victoria Williams, who is a consultant Neurologist at Guy’s and St Thomas Hospital.

Current work and future goals

REFUEL-MS is divided into six work packages (main areas) outlined below:

• WP1: We are developing a theory/evidence-based, tailored digital cognitive-behavioural and exercise treatment that can be implemented within the NHS.
• WP2: We are building an understanding of how REFUEL-MS can best meet the needs of under-served/seldom-heard groups and the social care needs of people living with MS.
• WP3: We will be testing the first version of REFUEL-MS and get feedback from people living with MS to improve the features, functionalities, and user-friendliness of the app.
• WP4: We will identify the barriers and factors that can help make the implementation of REFUEL-MS successful in healthcare services.
• WP5: We will evaluate the clinical and cost-effectiveness of REFUEL-MS and how well it fits with the way care is delivered in the NHS.
• WP6: We will develop a sustainable model for the delivery of REFUEL-MS to support smooth integration within NHS routine care and potentially a template of how to adapt REFUEL-MS for other inflammatory long-term conditions.

Currently, we are working on the first two work packages. In Work Package 1, we want to learn about how healthcare professionals and service managers in the NHS handle fatigue management and treatment. Specifically, we want to understand the challenges they face and the things that help or hinder them in providing effective fatigue treatment. This will help us to understand the training and implementation requirements for a fatigue treatment. At the same time, we are collaborating with healthcare professionals to ensure our treatment can be seamlessly integrated into the NHS and refine the treatment to make it more user-friendly and effective.

In Work Package 2, our main goal is to make the intervention more accessible and effective for groups of people who are often overlooked in MS research, such as those from minoritised ethnic backgrounds, LGBTQ+ groups, lower socio-economic groups or those with primary or secondary progressive forms of MS. We want to understand the specific needs of these groups and the social care requirements of all individuals living with MS. We hope to develop a module within the app designed specifically for carers.

Working together: The role of the community

Our Public Advisory Group (PAG) continue to be a big part of this project. They are involved in various activities, including co-production workshops, feedback sessions, and user testing of the online modules. They even helped us create the REFUEL-MS logo with Julian Beeton from Lewisham and Greenwich NHS Trust! Additionally, they will be involved in the qualitative analysis of data collected as part of our studies.

We have also worked hard to ensure we are actively representing and engaging a diverse range of communities who are often under-represented in MS research. Specifically, there is an unequal burden of how MS effects people from minoritised ethnic backgrounds and they are more likely to develop early disability and have a worse overall prognosis. To date, there has been little research exploring the experiences of people living with MS from diverse backgrounds.

Hiba and Nimmy have been leading the way in this and attended various community events to share about the research project and hear the experiences of people living with MS from diverse communities. This will help us ensure the new treatment is effective and acceptable to people living with MS from a broad range of communities.

Join us on this journey

We are currently recruiting and would love to hear from individuals living with MS, their loved ones who provide support, formal carers, and healthcare professionals. We are actively seeking participants for our studies, especially those from groups that are often overlooked in MS research.

Through REFUEL-MS, we hope to improve the quality of life for the millions of people living with MS around the UK. We are excited about the potential of REFUEL-MS to make a real difference!