Fatigue: My life, your research

In April 2019, patients, carers, clinicians and researchers from across the region gathered for a unique event, “Fatigue: My life, your research”.

This was the first time NIHR Clinical Research Network North East and North Cumbria held a co-created patient and public event. The purpose of the event was to raise awareness of fatigue, explore the ways fatigue can affect people’s lives and to increase opportunities to become involved and engaged in fatigue research across the region.

Helen Atkinson, Involvement and Engagement Manager NIHR CRN NENC, said: "The event provided an opportunity to raise the profile of fatigue and highlight it affects many different conditions and impacts on many people.

"To ensure everything from the venue to the content of the programme was developed together, the event was designed and delivered in partnership with patients.

"It was great to hear from leading clinicians and researchers across our region and learn about the research that is taking place. Our workshop discussions during the afternoon highlighted the need for further research into Fatigue."

Held at the Centre for Life in Newcastle, the packed conference consisted of presentations and group tasks, outlining what research is currently going on within the region and exploring what can be done to develop research studies in fatigue. Between sessions, the audience were encouraged to visit several marketplace stalls during breaks to discover the support and resources available to them from local organisations.

Kevin Short, Lead Nurse NIHR CRN NENC, closed the event and later stated: "It was great to see patients, groups, communities and researchers representing a range of health conditions coming together to develop a shared understanding of what fatigue means, to explore the current research and evidence base available for people living with fatigue and to identify future research priorities.

"The CRN NENC are committed to developing the ideas generated by this event into new research which can have a real impact in improving the health and wellbeing of people affected by fatigue. The conversation is ongoing, so please join in and let us know your views."

Victoria Bartle, a patient representative who helped co-host the event, explained: "It was great to hear about current research projects and I hope people took away from the day the fact that such a vast number of conditions can cause chronic fatigue. As fatigue impacts such a large number of people, I strongly believe research and increased awareness is vital, because without proper understanding of the causes of chronic fatigue there will continue to be no treatments or cures and limited understanding of such a prevalent issue.

"Surely focusing on research into fatigue conditions will benefit not just those of us suffering with them, but also our friends, family and society in general, as we can return to being fully productive as well as reducing the cost on the NHS and social care systems that currently attempt to support us as best they can."

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