In June 2023 Asian MS hosted a ‘Spotlight on MS Fatigue’ webinar. Asian MS is a national group providing tailored and culturally-sensitive services for Asian people with MS, their carers, friends and family. The webinar aimed to help attendees learn more about MS fatigue and possible strategies to cope with it; the webinar was hosted by MS Society Ambassador Trishna Bharadia.
The first speaker was Nicole Dodsworth, a Highly Specialist Occupational Therapist for Guys and St Thomas’ Foundation Trust in London. Nicole’s outpatient clinic provides specialist neuro-occupational therapy intervention for people with sub-acute, chronic, and progressive neurological conditions. Nicole explained that MS fatigue can be defined as ‘a subjective lack of physical &/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activity’ (MS Council, 1998). However, Nicole also made it clear that fatigue is different for everyone and cannot be compared like for like; it can come on very quickly, after only small effort, and usually it cannot be resolved with rest. Fatigue impacts physical and cognitive abilities, as well as social and emotional interactions having a serious effect on someone’s ability to work and their quality of life overall. In her sessions with MS patients Nicole supports people in their education around fatigue, including helping people to really get to know their own individual experience of fatigue. Example fatigue diaries and jobs lists were shared during the webinar to show attendees the kind of questions they may be asked during a session at the clinic. Additionally Nicole explored energy conservation techniques and goal-setting for fatigue management.
Following on we heard from Rona Moss-Morris, Professor of Psychology as Applied to Medicine and Head of the Department of Psychology at the Institute of Psychology, Psychiatry and Neuroscience, King’s College London. Rona has been researching psychological factors that affect symptom experience and adjusting to chronic medical conditions, including multiple sclerosis for the past 30 years. Rona is also the lead for REFUEL-MS – a 5.5 year research study that will draw together the current most effective cognitive-behavioural and exercise fatigue treatments into a tailored digital treatment that can be implemented routinely across NHS MS services. The study is supported by the National Institute for Health Research, King’s College London, Guy’s and St. Thomas’ NHS Foundation Trust and the MS Society. REFUEL-MS are designing a digital treatment which will be app-based, offering an interactive and personalised experience led by healthcare professionals. It will be provide a mixture of exercise and CBT as a way of helping tackle MS fatigue. Rona explained that the benefit of a digital strategy like this is that more people with MS would have access to specialist healthcare professionals (such as Nicole Dodsworth, who is herself involved with the project).
Next we heard more about REFUEL-MS from Nimmy Sidhu, a research assistant at the Institute of Psychology, Psychiatry and Neuroscience, King’s College London. Nimmy currently works on the REFUEL-MS research programme, her role involves exploring the social care needs and the lived experiences of people living with MS to inform the development of a digital intervention to ensure it is accessible and acceptable for a diverse range of people living with MS. Nimmy explained that REFUEL-MS are running a diversity study to hear the perspectives and experiences of people with MS, especially those from seldom heard groups such as ethnic minorities, LGBTQ+ communities, or older people who may be less likely to be involved in research, amongst others. This study will help the project to understand what to include in the app. Nimmy highlighted the importance of having people from minoritised ethnic backgrounds involved in research, pointing out that a lot of published research is focused on middle-class Caucasian people. More diverse research could reduce health inequalities for people from minoritised ethnic backgrounds. One tactic the project uses to make their research more accessible is translating information into languages such as Hindi, Punjabi, Tamil and more. Additionally REFUEL-MS are running a study into social care and are hoping to hear from people with MS as well as people providing support (loved ones or paid carers).
Following Nimmy’s presentation there was an informative Q&A session with questions coming in around fatigue and its links to employment, supplements, heat, age and menopause.
Asian MS is aimed at anyone whose heritage originates from anywhere in Asia, including the Indian sub-continent and the Far East. Membership is open to everyone (regardless of their heritage) who might be interested in accessing this support or helping to provide it. Find out more here.
By Ellie Hubble
