- Up to 95% of people with multiple sclerosis (PwMS) experience fatigue-related symptoms.
- Fatigue-related symptoms are associated with significantly reduced quality of life and ability to work.
- Use of an online cognitive behavioural therapy (CBT) intervention program shows promise in reducing MS-related fatigue symptoms.
Addressing fatigue in MS remains a significant unmet need that profoundly impacts the quality of life and daily functioning for PwMS. The debilitating nature of fatigue for many PwMS is such that the international research community has discussed a need to rename this symptom, to reflect its full impact.
The lived experience of MS fatigue
Paralympian Janine Watson PLY, a member of MS Australia’s Lived Experience Expert Panel (LEEP) explains:
“MS fatigue is completely misunderstood with the general public. When I say I am tired, what I really mean is: My body is shutting down and I cannot function. My arms and legs are becoming paralysed. I am losing my sight. I am losing the ability to think and speak. It is difficult for me to even remember my own name.”
“As an athlete, I repeatedly get shamed as lazy or not dedicated to my sport as I only do one hour of training per day when other athletes do 5. What people don’t understand with MS fatigue is that every hour of activity, whether it be sports training or simply showering and dressing, results in at least 4 hours of recovery and bed rest to become functional again. That is not laziness.”
Traditional treatment options for MS-related fatigue are limited, highlighting the importance for PwMS to find ways to manage and cope with their fatigue.
What program was used in the study and how does it work?
Elevida is an online program, designed to help PwMS manage fatigue. To date, this program has only been prescribed in Germany, and in German. It is based on cognitive behavioural therapy (CBT), a psychological approach that helps individuals understand and change patterns of thinking, feeling and behaviour.
The program includes structured exercises, educational materials, and practical strategies to help users identify and modify thoughts and habits that can contribute to fatigue. It encourages self-reflection and gradual behaviour changes to improve energy levels and overall well-being.
The program is self-guided, meaning users can go through it at their own pace without needing direct guidance.
The German version of Elevida has been shown to be effective in reducing MS-related fatigue.
What was the aim of the research?
This study aimed to assess how well an English translation of Elevida is accepted and to gain information on the potential effectiveness of the program in PwMS in Australia.
What did the researchers do?
Researchers, supported by MS Australia, recruited 15 PwMS with self-reported fatigue to trial the translated version of the Elevida program. Participants included 9 individuals with relapsing-remitting MS and 6 with progressive MS.
The program consists of 9 modules involving online questions in the form of conversations, each taking approximately 60 minutes to complete. Participants were required to complete all 9 modules and were asked to allow 3 to 5 days between modules to reflect on the content, practice the skills they learnt, and complete the homework. The program follows a think-aloud protocol, which allows participants to provide their thoughts and experiences verbally while completing the task.
At the end of the program participants were asked to provide feedback on the program to determine if participants found Elevida useful (acceptable) and if it was practical for them to use. The study measured how participants engaged with the program, whether they thought it was helpful, and what challenges they faced. Feedback was gathered on ways to improve the program.
To test the effectiveness of the program in reducing MS-related fatigue, participants completed the Chalder Fatigue Scale (CSF) questionnaire prior to starting the program, on completion of the program and at 2 months after program completion.
What did the study find?
Published in International Journal of MS Care, the study found the English version of the program to be highly acceptable among those who took part. Over 90% of participants rated acceptability as good or very good, and approximately 70% reported that they found the program helpful. 80% of participants said they would recommend the program to others with MS-related fatigue.
The study also found that people with MS-related fatigue who participated in the program experienced a statistically significant decrease in their fatigue levels by the time they finished. Two months after completing the program, their fatigue levels remained lower than before they started.
What does this mean for people with MS?
This study adds to the growing evidence that CBT can help reduce fatigue in PwMS. By addressing the thoughts, emotions, and behaviours that can make fatigue worse, PwMS can experience an improvement in their fatigue levels. Used in combination with other therapies such as medication and physical therapy, CBT offers a more wholistic approach to managing fatigue related symptoms.
A program like Elevida offers particular promise. The program is made specifically for people dealing with MS-related fatigue, so the strategies are tailored to the unique challenges of the condition. The program is online, so is particularly convenient for those who have difficulty accessing in-person support. The program has been shown to be effective in reducing MS-related fatigue in a large randomised clinical trial in Germany and now in a small cohort in Australia.
Based on outcomes from this study, the next step is to optimise the English version of Elevida so it can be trialled in larger studies of people living with MS-related fatigue in Australia. The ultimate goal is to provide an intervention that can offer a meaningful relief of MS-related fatigue symptoms that may improve the quality of life of people living with MS in Australia.
