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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.
![Prototype Designer](https://static.wixstatic.com/media/11062b_51b3c353893c4cd9bf7e236bd46e6538~mv2.jpeg/v1/fill/w_1120,h_383,al_c,q_85,usm_0.66_1.00_0.01,enc_avif,quality_auto/11062b_51b3c353893c4cd9bf7e236bd46e6538~mv2.jpeg)
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.
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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 are now in the process of setting up our next trial that aims to start in 2025, which will be a trial to test if the REFUEL-MS app reduces fatigue when compared with standard treatment options. We will be working alongside the UK MS Register to recruit people living with MS so keep an eye on their website, our social media or other community groups if you would like to hear more!
Meet the Team!
Previous Members
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Emily Salisbury (Research Assistant & Trainee Health Psychologist)
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Emma O'Connor (Research Assistant)
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Avianjani Savira (MSc Project Student)
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Olivia Tamburro (BSc Placement Student)
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Sajal Porwal (MSc Placement Student)
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Jumainah Hassan (MSc Placement Student)
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Pearla Papiernik-Berkhauer (Research Assistant)
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Nimmy Sidhu (Research Assistant)
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Hiba Adan (Research Assistant)
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Remaira Seetal (BSc Summer Student)
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Sanjana Prabhakar (MSc Research Project)
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Federica Picariello (Co-Investigator)
Collaborators
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Afsana Faheem
Diversity collaborator
![jenny.jpg](https://static.wixstatic.com/media/1c72dc_f274c5f642154ea49a1b1d2349c79569~mv2.jpg/v1/crop/x_2,y_0,w_100,h_100/fill/w_140,h_140,al_c,lg_1,q_80,enc_avif,quality_auto/jenny.jpg)
Jenny Freeman
Co-Investigator
![mercer.png](https://static.wixstatic.com/media/1c72dc_bfc85e8e4a7b4d74af55a30ff533224d~mv2.png/v1/fill/w_225,h_225,al_c,q_85,usm_0.66_1.00_0.01,enc_avif,quality_auto/mercer.png)
Tom Mercer
Co-Investigator
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Victoria Williams
Co-Investigator
![Refuel MS-RGB-Full colour_edited.png](https://static.wixstatic.com/media/2be87f_c1468c727ead44a19c68904019dc229f~mv2.png/v1/crop/x_0,y_85,w_356,h_356/fill/w_225,h_225,al_c,q_85,usm_0.66_1.00_0.01,enc_avif,quality_auto/Refuel%20MS-RGB-Full%20colour_edited.png)
Etha Taylor
Co-Lead of PAG
![anisha.png](https://static.wixstatic.com/media/1c72dc_dcaee01b522f44799a481ffff76cc2c4~mv2.png/v1/fill/w_225,h_225,al_c,lg_1,q_85,enc_avif,quality_auto/anisha.png)
Anisha Gangotra
Diversity and inclusive exercise collaborator
![mariette.jpg](https://static.wixstatic.com/media/1c72dc_b045b7f641b84b288ab8dc3693544be4~mv2.jpg/v1/crop/x_0,y_8,w_308,h_308/fill/w_225,h_225,al_c,q_80,usm_0.66_1.00_0.01,enc_avif,quality_auto/mariette.jpg)
Marietta van der Linden
Co-Investigator
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Sarah Thomas
Co-Investigator
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Wendy Hendrie
Physiotherapist
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Ian Jubb
Co-Lead of PAG
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Barbara Barrett
Co-Investigator
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Pam Bostock
Occupational Therapist
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Tracy Finch
Co-Investigator
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Trishna Bharadia
Diversity collaborator and MS champion
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James Shearer
Co-Investigator
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Sam Norton
Co-Investigator
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Tom Sanders
Co-Investigator
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Helen Eldridge
Co-Lead of PAG
In The News
![Screenshot 2023-07-21 at 16_edited.jpg](https://static.wixstatic.com/media/2be87f_1b937cf2f0f24aee9730cc5c840c4306~mv2.jpg/v1/crop/x_245,y_0,w_341,h_420/fill/w_315,h_388,al_c,q_80,usm_0.66_1.00_0.01,enc_avif,quality_auto/Screenshot%202023-07-21%20at%2016_edited.jpg)
Meet the researchers who want seldom-heard groups to be at the centre of their research into fatigue