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Study suggests most people with MS aren’t being offered fatigue treatments

A recent study using the UK MS Register found less than a third of people with MS have been offered a treatment for fatigue as part of their routine care. This is despite 90% of people reporting fatigue as a symptom of their MS. We’ve committed to raise funds for a new project to help address this.

In recent years, lots of research has tested potential treatments for MS fatigue. But this study suggests there hasn’t yet been much impact on how fatigue is managed in routine care.  

It found only 1 in 5 people (22%) were offered a medication for their fatigue. And even fewer (8%) were offered non-drug treatments, like talking therapy or exercise. Unsurprisingly, the vast majority (84%) said they wanted to be given better fatigue treatments.  

Read the full paper on the journal website

We need a choice of effective treatments 

Scientists think MS fatigue is triggered by the inflammation and myelin damage that’s part of MS. We don’t yet have a full understanding of the processes that drive MS fatigue. But we think biological, lifestyle and environmental factors can all affect your day-to-day experience.  

Read about research we funded into the biological causes of MS fatigue

Many people with MS find existing drug treatments, like amantadine, help their fatigue. But these don’t work for everyone. They often come with side effects. And some evidence suggests non-drug treatments can actually make a bigger difference to fatigue levels.  

So as well as developing better medications for MS fatigue, we need other ways to help people with MS reduce their fatigue. This means people can be offered a choice of treatments. And find the one that’s right for them.  

A gap between research and the clinic 

So far, most non-drug programmes for MS fatigue haven’t been designed to factor in how they'd be delivered on the NHS. This can make it more difficult for people to access them. Especially with all the pressures our GPs and neurology services are facing.  

The new programme, called REFUEL-MS, will be the first that's been developed with the NHS’ requirements at its heart. And the researchers are working closely with healthcare professionals and NHS services to design and test it.  

Exploring thoughts, feelings and actions 

REFUEL-MS will be based on the latest evidence about what can help reduce fatigue.  

It might seem to go against common sense, but research shows doing physical activity can improve fatigue. So the programme will help people make physical activities or exercises part of a consistent daily routine.

Evidence also shows fatigue can be improved by exploring how you think and feel about your fatigue.  For example, being self-critical can worsen fatigue.  What you do in response to those thoughts and feelings can also make a difference.

This technique is called cognitive behavioural therapy (CBT). CBT became well-known for treating anxiety and depression. But CBT for fatigue is different.

Our online fatigue management tool can already help you put unhelpful thoughts on trial. REFUEL-MS will use CBT techniques to help people develop new ways of managing fatigue day-to-day. Physiotherapists and occupational therapists will also provide personalised guidance.

Shaped by people with MS 

Lots of people with MS have been involved in shaping this research from the beginning. 

Family and friends who support people with MS will also be involved. And people from diverse backgrounds are helping the team reach traditionally under-served groups, like people from minoritised ethnic groups.

REFUEL-MS is being co-funded by the MS Society and the National Institute for Health and Care Research (NIHR).