Lived Experience of Myasthenia Gravis
Research type
Research Study
Full title
Exploring the lived experience of Myasthenia Gravis patients who self-report remaining symptomatic?
IRAS ID
360370
Contact name
Mary Quirke
Contact email
Sponsor organisation
Oxford Brookes University
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
Myasthenia Gravis (MG) is a long-term condition that affects how messages travel between the nerves and muscles within the body. This can cause muscles to readily weak or tired during activity. With this individuals struggle with repetitive actions and need to rest sooner and more often. There is no known cause for MG. It can affect people of any background, but it is more common in younger women and older men.
Treatment for MG follows international clinical guidelines which mainly focuses on managing the physical symptoms using medication. While many people respond well to treatment and rarely experience symptoms, others continue to experience weakness and fatigue even when they are receiving what is medically consider the best available treatment. For these individuals, MG can have a significant impact on their quality of life.
Being diagnosed with a long-term condition can also affect a person’s emotional wellbeing, sense of identity, and everyday life. However, most research on MG has focused on the physical experience of MG, with less attention given to how people experience living with MG on a personal and emotional level.
This research recognises that living with MG is not just a physical experience, but also involves psychological, social, and personal challenges. In contrast to focusing on the physical aspects nursing theory emphasises the importance of understanding the whole person, not just the illness, and highlights the value of person-centred and holistic care.
This study aims to understand what it is like to live with Myasthenia Gravis (MG) from the individual’s perspective. Up to ten individuals with MG will be invited to take part in one-to-one interviews. The information gathered will be analysed with the hope to support more understanding and individualised care which meets the needs of those living with MG who remain symptomatic despite treatment.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
26/EM/0120
Date of REC Opinion
16 Jun 2026
REC opinion
Further Information Favourable Opinion