Researchers have developed a new programme to help reduce the impact of fatigue on the lives of children and young people with MS.
The programme was announced today at MS Frontiers, the UK’s largest MS research conference. Our MS Frontiers conference brings together researchers and clinicians to share ideas and discuss their latest findings.
Understanding the effects of fatigue
We funded researchers at King’s College London to understand how fatigue impacts young people's school, social and family life. The team worked with children with MS and their parents, as well as children with conditions like chronic fatigue syndrome.
They found that children with MS see fatigue as unpredictable and out of their control. Finding a good balance between the time spent doing activities and resting can also be a challenge. And some children struggle to tell their friends and teachers about their fatigue, so they receive less support.
Parents of children with MS said they were worried that fatigue could have an effect on mental health.
Helping children to manage fatigue
The researchers used these findings to develop a new programme to help children manage their fatigue and reduce the impact it has on their quality of life. The programme is based on techniques from cognitive behavioural therapy, which we know can be effective in helping adults with MS to manage fatigue.
The programme includes a range of strategies for children to manage fatigue at school and at home. Like how to get a better night’s sleep, how to be more open about the challenges of living with fatigue and how to make the best use of your energy. It also includes information for parents on how they can help their children manage their fatigue.
The researchers gathered feedback from children with MS so they can make improvements to the programme before it's rolled out.
We need more treatments for young people with MS
Although there are some effective fatigue therapies for adults with MS, this is the first time a programme has been designed specifically for children.
Dr Susan Kohlhaas, our Director of Research, said: “Over 100,000 people live with MS in the UK, with 5-10% experiencing their first symptoms before the age of 16. Fatigue is one of the most common symptoms of MS and it can have a huge impact on quality of life – for both adults and children.
"Research has got us to a critical point, and we’re really proud to be funding studies like this one, which are crucial to helping people to manage their worst symptoms until we can stop MS.”