Alice Freer
Understanding Fatigue in PSC
Awarded to Alice Freer (University of Birmingham and University Hospitals Birmingham)
with Dr Felicity Williams, Dr Eduardo Martinez Valdes and Dr Palak Trivedi
The total grant awarded is £277,782.62
Duration of award: 3 years September 2025 to August 2028
Research title: Understanding Fatigue in PSC
Summary
PSC Support has awarded £277,782.62 to Alice Freer and her team to help improve our understanding of fatigue in PSC.
Alice will follow a group of people with PSC for 6 momths, looking at the severity of fatigue, how fatigue changes over time, and any specific causes that make fatigue worse. She will compare these results to other diseases and those without PSC.
This will help uncover causes of fatigue and provide evidence for future studies testing treatments to reduce fatigue in PSC.
Fatigue affects 7 out of 10 people with PSC. It is an overwhelming tiredness that isn't relieved by sleep or rest. Yet we know very little about fatigue in PSC, and have no treatment for it. Alice Freer’s work will provide us with a new understanding of fatigue and provide evidence that studies can use in the future to develop much needed treatment and management options for this debilitating symptom.
What will the team do?
Alice’s team will observe a group of patients over a 6-month period looking at the severity of fatigue, how it changes over time, and what makes it worse. It will also help spot any specific causes for fatigue in PSC compared to other diseases and those without PSC.
Eighty participants will be recruited:
- 20 PSC with and without inflammatory bowel disease (IBD) with fatigue;
- 15 PSC without fatigue;
- 15 IBD;
- 15 with a non-alcohol related liver disease and
- 15 healthy controls from University Hospital Birmingham
During the study, participants will complete questionnaires about fatigue, sleep, mood, overall quality of life and quality of life questionnaires relating to liver disease and IBD. They will also do tests of exercise ability and muscle (walking test whilst assessing breathing and a muscle ultrasound), central nervous system (best use of the thigh muscle with non-invasive electrical signals to the muscle), strength and endurance (hang grip test) and inflammation (blood and stool). Participants will also be asked to wear a wrist-watch device at two points during the study to collect information on physical activity and sleep. All measures will then be compared between each visit and between groups.
Following this, Alice will compare the results between the different patient groups and gather evidence on how and why fatigue presents in PSC the way it does.
Why is this study important?
Fatigue is one of the most commonly reported symptoms by people with PSC, affecting over 70% of patients. It can significantly reduce quality of life by interfering with, for example, the ability to work, attend school, and/or be involved in social or family activities. It can also be unpredictable, and as an invisible symptom it is difficult to manage.
People with PSC often report that their doctors don’t ask about fatigue, and perhaps this is due to the limited medical information on the topic, lack of tools for assessment and no proven treatment options, nor specific support or advice for management of this symptom.
It is hoped that this study will address this, and that discussion about fatigue will become standard practice in clinic appointments in the future. Alice’s study will also provide the foundation of evidence to develop much-needed management and treatment options for fatigue. Reducing fatigue, a major symptom for people with PSC, could be life changing and give people their lives back.
With the grant from PSC support I am aiming to gain a greater understanding into the mechanisms or patterns of fatigue in PSC. This will provide a stepping stone into the development of potential treatment options (that include exercise, health psychology, sleep support) on an individual basis.
This is important because currently fatigue is not well understood and therefore poorly managed and rarely asked about. Fatigue is described as an invisible symptom of PSC that is misunderstood and causes significant impact on quality of life.
I am interested in PSC because as a rare disease there is so much yet to discover to improve patient pathways, experience and treatment options. From experience, those with PSC are a very engaged group of people that want to improve their health status and challenge clinicians to want to improve delivery of care.”
- Alice Freer
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