When David was diagnosed with multiple sclerosis (MS) 16 years ago, he read everything he could about the neurological condition and how it would affect his life. A recurring theme was the impact of physical and mental fatigue reported by people living with MS.
“I remember thinking – fatigue? Really? It can’t be that bad,” says David.
“I was wrong. Persistent mental and physical fatigue has robbed me of the ability to do many of the things I used to enjoy, including work. Simple activities such as reading a book can be difficult, as I forget what I’ve just read and need to re-read it.”
Many people with MS report fatigue as their worst symptom.
“I have friends with MS who are in wheel chairs or bed-bound, yet they too say fatigue is one of their worst symptoms,” says David. “If you don’t have MS, don’t just dismiss it as someone being tired. It’s a lot more than that.”
David has tried a variety of medications to help combat fatigue, however they have not helped.
Research Fellow Dr Jo Lane and her team at the Research School of Population Health at the Australian National University, have responded to the call by people living with MS-related fatigue and are trying to find a solution.
“The fatigue described can be truly debilitating,” says Dr Lane.
“A constant feeling of tiredness or weakness impacts every aspect of a person’s life. From tasks like housework, parenting, and employment, to simple activities such as watching a movie. Not only does this cause distress, the potential loss of social interactions can also negatively affect quality of life and psychological wellbeing. Our team of researchers were approached by people impacted by MS-related fatigue, including David, and they were the inspiration for us to focus more on this work. This is why we think this research is really important.”
To this end the research team has been awarded a highly competitive Incubator Grant by MS Research Australia (19-0722) to trial an online cognitive behavioural therapy program called ELEVIDA. Designed by researchers and people living with MS in Germany, the program has been proven, in Germany, to significantly reduce self-reported fatigue in people living with MS compared to controls.
“We are excited to be the first to trial the English version of ELEVIDA here in Canberra,” says Dr Lane, “if this pilot study is well accepted, we will roll out the ELEVIDA program into a much larger study”.
“ELEVIDA uses strategies to change the way people think about their fatigue and associated negative thought patterns. For example, a person with MS-related fatigue might wake up and think – I feel tired already, and conclude today is going to be a bad day before it has begun, which will impact their mood and behaviours. ELEVIDA focuses on identifying patterns associated with MS-related fatigue and creating new ways of thinking, behaving and feeling associated with this symptom.”
David is keen to try the ELEVIDA program, and hopes for a successful outcome.
“The fatigue from MS has really slowed me down. I can’t plan what I will do for the day, and don’t have the mental energy to follow things through,” says David.
“On the rare days I do have energy and clarity of thought, I realise what I have lost. I would be glad to shed this skin so that I can see the world as clearly as I used to.”
** This MS research forms part of the University’s ‘Our Health in Our Hands’ Grand Challenges Scheme. This initiative aims to transform healthcare by developing new personalised health technologies and solutions in collaboration with people living with MS, clinicians and health care providers.