A Blended Digital Self-Management
tReatmEnt for FatigUe in multiplE scLerosis (REFUEL-MS)
Our aim is to design, develop, evaluate and implement a tailored digital treatment to help manage MS-fatigue.
REFUEL-MS explores thoughts, feelings and actions which research shows can make fatigue better or worse. This knowledge will be used to develop personalised ways of managing fatigue, including incorporating physical activity into daily routines. The treatment will be delivered digitally with guidance from physiotherapists and occupational-therapists.
Why do we need REFUEL-MS?
1 in 500 people in the UK are living with MS.
Fatigue is one of the condition's severe symptoms, shown to impact quality of life significantly. While cognitive and behavioral treatments including exercise hold promise for treating MS fatigue, these are not routinely available in the NHS.
In our survey of 4,210 people living with MS:
90% reported experiencing fatigue, but only 8% had received any treatment
Developing the REFUEL-MS intervention and training facilitators.
Our Process
Understanding how to adapt the intervention for underserved and seldom-heard groups.
Optimising the intervention by determining it optimal features and functionalities
Assessing implementation outcomes and cost-effectiveness of the intervention
Considering contextual barriers and facilitators to refine REFUEL-MS
Integrating the intervention into a sustainable model
Get Involved
Patient and public involvement (PPI) has been crucial throughout the development of the programme and will continue to seek your input as we develop REFUEL-MS. If you are someone living with MS and want to be involved in the co-production of the REFUEL-MS digital intervention, get in touch!
We have just received for ethical approval for stage 3, which will involve a small number of people living with MS testing the functions of the REFUEL-MS app. Please check our social media pages for links to recruitment. We have been overwhelmed by the response so far, which really highlights how important interventions like REFUEL-MS are.
Meet the Team!
Previous Members
-
Emma O'Connor (Research Assistant)
-
Avianjani Savira (MSc Project Student)
-
Olivia Tamburro (BSc Placement Student)
-
Sajal Porwal (MSc Placement Student)
-
Jumainah Hassan (MSc Placement Student)
-
Pearla Papiernik-Berkhauer (Research Assistant)
-
Nimmy Sidhu (Research Assistant)
-
Hiba Adan (Research Assistant)
-
Remaira Seetal (BSc Summer Student)
-
Sanjana Prabhakar (MSc Research Project)
-
Federica Picariello (Co-Investigator)
Collaborators
Afsana Faheem
Diversity collaborator
Jenny Freeman
Co-Investigator
Tom Mercer
Co-Investigator
Victoria Williams
Co-Investigator
Etha Taylor
Co-Lead of PAG
Anisha Gangotra
Diversity and inclusive exercise collaborator
Marietta van der Linden
Co-Investigator
Sarah Thomas
Co-Investigator
Wendy Hendrie
Physiotherapist
Ian Jubb
Co-Lead of PAG
Barbara Barrett
Co-Investigator
Pam Bostock
Occupational Therapist
Tracy Finch
Co-Investigator
Trishna Bharadia
Diversity collaborator and MS champion
James Shearer
Co-Investigator
Sam Norton
Co-Investigator
Tom Sanders
Co-Investigator
Helen Eldridge
Co-Lead of PAG
In The News
Meet the researchers who want seldom-heard groups to be at the centre of their research into fatigue
