The MS Society has launched a first-of-its-kind online course to combat one of the most common and debilitating symptoms of multiple sclerosis (MS) – fatigue.
Created with the help of people living with MS, the interactive e-learning tool was developed to look at the daily reality of life with MS fatigue – an invisible symptom which affects over 80% of those living with the condition, and is one of the main reasons people have to give up work .
The free course is based on a programme of face-to-face workshops known as FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to life Style). Co-funded by the MS Society, these were developed by researchers at Bournemouth University and involved people with MS throughout the process.
Responding to demand from healthcare professionals, the MS Society translated these six face-to-face workshops – which cost an estimated £453 per person – into accessible online sessions that will allow more people with MS access to them. This includes people with mobility impairments, those working full time, and those living in areas where the course is not available. It is hoped the new online function will relieve pressure on healthcare professionals, and could result in significant cost savings for the NHS as demand for the face-to-face programme lessens.
The online sessions, lasting 20 minutes each, aim to normalise the effects of MS fatigue, using strategies and techniques like the Cognitive Behavioural Model to teach people with MS to recognise unhelpful thought patterns and provide techniques to overcome these. Each session has been reviewed by people living with MS fatigue, like Katherine.
Katherine Stacey, 50, from Oxford, was diagnosed with relapsing MS in 2014. Her chronic fatigue forced her to give up a career in Biomedical Science, and she now works reduced hours as an admin assistant for Public Health England. Before taking part in the fatigue-management course she was preparing to give up work completely.
She says: “My fatigue can be overwhelming – everything is a blur and I can’t think straight. It has been increasing over the years, and I was finding it really hard to manage at work. I constantly felt torn between looking after myself and getting the work done.
“If I’m honest, I was slightly sceptical about how the online fatigue-management course would help me, but after just the first session I’d learnt loads. I argue with myself every day about whether I can justify taking my work breaks – even though my manager wants me to take them – but the course explained that these are ‘unhelpful thoughts’ and that really resonated with me. Now, when I have doubts, I can look back at my notes and remind myself fatigue management is there to help me stay in work, be productive and live well with my MS.”
Mavis Ayer, an MS Lead Nurse from Southampton had training to deliver FACETS face-to-face, however due to a lack of time and resources was only successful in running the course once. She says: “Fatigue is a challenge to manage both for people with MS and healthcare professionals, and we’re excited by what this new online course can offer. It has potential to help alleviate some of the significant pressure on healthcare professionals and, importantly, will allow people with MS to self-manage their condition from anywhere in the UK. It will also reach more people than ever before – including those who struggle to physically attend courses due to MS fatigue.”
Dr Sarah Thomas, from Bournemouth University, who led the development of the original FACETS group programme, says: “We’re excited to have worked with the MS Society to create their new online course, which will give everyone with MS the chance to access tools to support them to manage their fatigue. People have described FACETS as life-changing, allowing them to get their lives back, and we hope to see the same positive results from the online course.”
Nick Moberly, Chief Executive of the MS Society, says: “More than 130,000 people live with MS in the UK and, while it is unpredictable and different for everyone, fatigue affects around 80% of us living with the condition. We get over 100,000 visits to the fatigue pages on our website each year, so were thrilled to work with researchers at Bournemouth University to create a new, much-needed tool that offers improved support. We’re confident it will go a long way to helping thousands of people living with the debilitating effects of daily MS fatigue, and incredibly grateful to those living with MS who helped shaped the user experience.”