Less than a third of people with Multiple Sclerosis (MS) have been offered treatment for fatigue as part of their routine care, it has been revealed.
Despite 90 per cent of people reporting fatigue as a symptom of their MS, a study using the UK MS Register has found a lack of options in support are routinely offered.
The study also revealed that one in five people – 22 per cent – were offered medication for their fatigue, with even fewer – eight per cent – offered non-drug treatments, like talking therapy or exercise.
The vast majority of those who took part in the research – 84 per cent – said they wanted to be given better fatigue treatments.
The findings help to illustrate the need for intervention, with the MS Society currently developing the REFUEL-MS programme, based on the latest evidence about what can help reduce fatigue and developed with the requirements of the NHS at its core.
While many people with MS find existing drug treatments, such as amantadine, can help their fatigue, this does not work for everyone, and side effects can be common.
The MS Society also says some evidence also suggests non-drug treatments can make a bigger positive difference to fatigue levels.
Through REFUEL-MS, the MS Society will explore all options in effectively addressing and tackling fatigue.
Aspects that will be included are physical activity or exercise as part of a consistent daily routine and cognitive behavioural therapy (CBT) to help develop new ways of managing fatigue.
“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,” said the MS Society.
“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.
“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.”
The MS Society also said that family and friends who support people with MS will also be involved, as well as people from diverse background, including those from minoritised ethnic groups.
REFUEL-MS is being co-funded by the MS Society and the National Institute for Health and Care Research (NIHR).
