The gap in fatigue research – and what we’re doing about it

For many people, the fatigue that comes with arthritis is one of their biggest daily challenges. 

Fatigue isn’t something to downplay. It can have a huge impact on people’s ability to perform everyday tasks and their quality of life. In fact, almost 1 in 7 people with musculoskeletal (MSK) conditions say that fatigue impacts their ability to do day-to-day activities. 

Despite this, fatigue is often overlooked, under-prioritised and not well understood.  

That’s why, together with The Kennedy Trust, we’re hoping to fill the gap in fatigue research.  

What is fatigue? 

Fatigue is an extreme, sometimes overwhelming, physical, and mental tiredness, that doesn’t get better with rest or sleep. 

It can affect your motivation and ability to concentrate. Plus, it can make other symptoms, such as pain and joint stiffness, feel more severe and limiting. Some people also find that fatigue affects their emotional well-being making them feel irritable and depressed. 

For many people, one of the most challenging aspects of fatigue is just how unpredictable it can be. It can start suddenly at any time of day and can last for an hour or for several days. 

How does fatigue affect people with arthritis?

Over 20 million people in the UK are estimated to live with a MSK condition – and fatigue is something that many of them face. 

It’s a common symptom of autoimmune conditions, such as rheumatoid arthritis, reactive arthritis and lupus. People with these conditions can experience physical and mental fatigue not only during flares, but also when their condition is well-managed, and even during remission.  

Fatigue is also strongly linked to conditions that can cause long-term pain, such as fibromyalgia, polymyalgia rheumatica and complex regional pain syndrome. People with osteoarthritis also report fatigue too. 

Fatigue doesn’t just affect adults . Three-quarters of children and adolescents with MSK conditions also say they experience fatigue. And this can have a major impact on their day-to-day life, impacting their school performance, social life, as well as their sports and hobbies. 

Even though it’s common, fatigue can be one of the most difficult symptoms to address because of its invisible and unpredictable nature. Plus, it can affect people’s ability to work, and is associated with high levels of sick days, disability, and job loss. 

Why is it important that we know more about fatigue? 

Versus Arthritis and the Kennedy Trust got together to discuss how we could partner to make a meaningful difference to UK MSK research.  

Together we recognised that fatigue is an overwhelming priority for people with arthritis and related MSK conditions. 

However, the truth is the causes of fatigue aren’t clear and there’s currently no cure. 

Understanding of why and how fatigue occurs biologically, as well as treatment for fatigue is severely lacking. To add to this complicated picture, current evidence suggests that there are likely to be multiple factors that contribute to fatigue and that these will vary between people.  

To make matters more difficult, even though fatigue is a common problem, there’s also no widely accepted definition of fatigue. 

And, although some interventions for managing fatigue exist, they’re not widely available to people with MSK conditions. 

How can we tackle fatigue? 

To address these problems, Versus Arthritis and The Kennedy Trust held a workshop in 2020 to identify priorities for future research into fatigue. 

The workshop brought together a range of health care professionals and researchers from diverse backgrounds, alongside people with lived experience. They identified areas of research where Versus Arthritis and the Kennedy Trust could work together to make an impact on the lives of people living with musculoskeletal fatigue. 

As a result of the workshop, we decided we wanted to better understand existing evidence and inform future research. 

Together, we decided the first step would be to fund a piece of work to look closely at current fatigue research. 

This project will explore what is already known on the ways of measuring, assessing and treating severe fatigue associated with rheumatic and related musculoskeletal conditions. The project will take a life course approach and consider fatigue in children, young people and adults. 

Now, we’re excited to announce that Professor Emma Dures has been awarded funding to carry out this important review with her team at the University of the West of England (UWE) starting August 2023. The UWE team will work with collaborators at University College London (UCL) and the University of Aberdeen. 

What will the researchers do?

Professor Dures is a chartered psychologist who is passionate about how mental, emotional, and social factors impact the physical health and wellbeing of people with inflammatory rheumatic diseases. 

Her team of researchers will review existing clinical and scientific evidence on fatigue, including its measurement and management. Then they’ll map out what is missing. 

“I am delighted to have the opportunity to conduct in-depth and wide-reaching reviews of the evidence in relation to fatigue across the life cycle and across conditions," says Professor Emma Dures.

"I have been working in rheumatology since 2009 and know from patients that fatigue is one of the biggest challenges that they’re having to deal with. As part of this project, we’ll be collaborating with patients to ensure that our work is informed by their experiences and insights into this complex symptom.”

From this work, they aim to: 

• recommend ways of measuring fatigue for healthcare professionals and researchers. 
• understand the current evidence behind existing treatments and what is needed for them to be delivered effectively. 
• define fatigue from the perspective of people living with musculoskeletal fatigue. 
• identify gaps in the support available for fatigue along with the groups of people whose healthcare needs are currently not being met. 

What does this mean for the future? 

It’s hoped that this vital work will give us a starting point to inform and guide which future research we should fund. 

So, that we can help people with arthritis get the treatment and support they need to tackle fatigue.