For those living with multiple sclerosis (MS), fatigue can have a hugely negative impact on their lives, limiting everything from basic day-to-day activities to missing out on the things that really matter in life, and it’s the main reason why people with MS stop working.
A team of experts from the BU Clinical Research Unit (BUCRU), including Professor Peter Thomas (Director) and Dr Sarah Thomas (Deputy Director), first tackled the issue of how psychological approaches could support people with MS to better cope with the debilitating symptom in 2006, discovering that cognitive behavioural approaches could be helpful.
In 2010, the group collaborated with the Dorset MS team at Poole Hospital to develop a programme that would help people with MS self-manage their fatigue. It became known as FACETS – Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to LifeStyle.
The MS Society’s ‘What is MS?’ playlist on YouTube explains more about the disease and its effects.
Combining cognitive behavioural approaches with energy effectiveness techniques, FACETS was designed to give people with MS tools and strategies to manage their fatigue and explore different, more helpful ways of thinking about it.
“Energy effectiveness techniques focus on maximising available energy and making the most of the energy a person has,” Dr Thomas, who led the development of FACETS, wrote in the magazine MS Matters in 2013. “For people affected by MS, energy is often in short supply so it’s important to think about carefully budgeting energy reserves and spreading out energy ‘spending’ over the course of the week. It’s important to make sure some energy is left for valued and enjoyable activities.”
One of the recommended techniques is ‘pacing’ – balancing activity and rest – while another strategy is to do activities in an energy-saving way, such as ironing sitting down. Asking for help, thinking through and re-evaluating priorities and keeping an activity/fatigue diary are other encouraged tasks.
While energy effectiveness approaches are helpful, some people with MS encounter barriers that can stop them from applying the techniques. “Cognitive behavioural (CB) strategies can help to overcome some of these barriers by helping people to challenge some of the thoughts that are getting in the way of lifestyle changes,” Dr Thomas continues. “It is based on the idea that sometimes, changing how we think about a situation influences what we feel and do.”
Former Executive Director of Policy & Research, MS Society, in 2015
We know that finding effective treatments for fatigue is a top priority for the MS community, so the fact that the FACETS programme is now being delivered across the UK, helping hundreds of people with MS, is a real achievement.
Promising results from national trial
In 2013 the researchers were successful in a bid to the MS Society who funded a trial to evaluate the effectiveness of FACETS. The national trial, led by Professor Peter Thomas, saw 164 patients from Poole, Bristol, Southampton and Portsmouth randomised into two groups – one that attended the FACETS programme in conjunction with their usual care, and one that continued with their routine care only.
The research showed that the FACETS group demonstrated encouraging improvements in fatigue severity and self-efficacy at a four-month follow-up, with 40% of patients reporting a clinically meaningful improvement in fatigue levels, compared with 19% from the usual care-only group. After a year, patients were reporting sustained improvements in fatigue and self-efficacy with additional improvements in quality of life emerging.
From research into practice
Inspired by the results, the MS Society supported the national delivery of one-day FACETS training courses (developed by the research team) for health professionals to equip them to deliver FACETS in their local area. This means that people with MS in the UK can benefit from the FACETS programme, delivered over six weeks by two healthcare professionals in small groups. “One of the most rewarding aspects of carrying out this work has been seeing FACETS rolled out into clinics – we hope, making a difference to people’s lives,” says Dr Thomas, who along with the rest of FACETS team was nominated for a prestigious MS Society ‘Research of the Year’ Award in 2014.
FACETS goes global
Globally, use and adoption of FACETS continues to rise. Looking at the FACETS programme, previous research findings have highlighted that fatigue management does not take place in isolation and proposed that additional ‘booster’ sessions might be a helpful addition to enable a review of progress and sustain benefits. Work is currently underway with a French research team based at the Université Paris Ouest Nanterre La Défense to develop and try these out.
Researchers in Norway and Germany have translated and adapted the FACETS programme for inpatient settings and other countries are also linking up with the programme. In November 2018, Angela Davies Smith, a clinical specialist research physiotherapist, was funded by the MS Society for NSW, VIC, ACT & Tasmania to travel to Melbourne, Australia, where she delivered training to healthcare professionals to equip them with knowledge and skills to deliver FACETS.
Working with collaborators from Auckland University of Technology in New Zealand and Brighton University, and building on their previous work, ‘MS Energise’, an Apple-based mobile phone app, has been created. In 2017, New Zealand became the first country to be able to download the app, followed by the UK. “Feedback from field testing so far has been very positive and participants have told us there is nothing else like MS Energise on offer,” says Dr Sarah Thomas.
Professor Peter Thomas adds: “We hope this app will support people to manage their fatigue in a personalised, interactive way to reduce its impact on their everyday lives.”
MS Energise is also now available in Australia, with people with MS in Canada, Ireland, and the USA set to benefit in the near future.
Screenshots from the MS Energise app
In 2016, BUCRU was asked to undertake a consultation on behalf of the MS Society to gather views from people with MS and healthcare professionals about the scope for a digital version of FACETS that could be delivered via their website. The consultation confirmed enthusiasm for a digital version of FACETS.
It also highlighted the potential for a digital toolkit focusing on the interactive homework elements of the FACETS programme. Funding for this digital toolkit has been provided through the Higher Education Innovation Fund, with the first version currently being developed for Android and closely involving people with MS throughout its design and build.