Photo: Two men sat on a bench in there garden

Let’s put fatigue to rest

Hi! I’m Carole. I have MS. I am a single parent, a teacher and sociable. I’m active, spontaneous and have lots of hobbies. Well I was - until I was struck down with fatigue.

I am now unable to work and I can't walk far. I have to plan for everything and often end up cancelling things.

What is fatigue?

Everyone gets a bit tired, don’t they? I remember an MS nurse telling me she had really bad fatigue after walking in the Yorkshire Dales that weekend. Her tiredness doesn’t even begin to describe fatigue.

Let me try to explain it. It’s a feeling of ‘walking through treacle’, brain fog, not have the energy to shower, seeing housework pile up, not being able to meet friends or have a relationship. Some days I can’t read or listen to music, let alone get out of bed. To make it worse, people don’t understand because fatigue is invisible. Some days I feel invisible.

But things are looking up. I am a member of the MS Clinical Trials Network (CTN), a group which helps researchers in the UK to ensure their work is relevant to MS. The MS Society is funding research into effective treatments for fatigue in people with MS (HOORAY!) and through this group, I have been involved in selecting the project. When I saw an article about applying to join the CTN’s fatigue working group I jumped at the chance. Well, I would have if I could still jump!

So how was I going to help?

I was able to provide something none of the researchers could - an insight into what life is like for someone living with MS fatigue. The MS Society and researchers in the field believe involving people affected by MS strengthens the quality and relevance of the research and it was great to see this happening in practice.

I was asked to talk about what it is like for me to live with fatigue. I asked the rest of the working group to imagine that I was one of their family members and then told them about my experiences and how fatigue affects my whole life. They were really interested in what I had to say and asked lots of questions. It was amazing to have such prominent people taking notice of something that is often invisible to others, yet so hard to cope with. My comments have already helped to shape this research project.

So what’s the project about?

The aim of this project is to:

  1. Review all research done so far looking at MS and fatigue.
  2. Look at effective management of fatigue in other medical conditions.
  3. Combine the best parts of all of one and two to design a future trial to help people with MS who experience fatigue.

Researchers were invited to apply to run this project and there was a great response. I was involved in selecting the project that is going to be funded, and can announce Professor Rona Moss-Morris and her team at Kings College have been successful. Rona is a very experienced researcher, and has carried out many projects looking at MS and fatigue.

I’ll be involved throughout the project to help make sure the research is relevant for people affected by MS fatigue, so watch this space…