Diane is looking at the social implications of long-term chronic illness, her PhD – using qualitative research methods – investigates how people with Chronic Fatigue Syndrome build and maintain social and community networks and relationships, both online and offline, in their daily lives. Diane has a personal and professional interest in living with chronic fatigue and its social construction, perception and understanding in society.
Myalgic Encephalomyelitis (ME) is a complex and misunderstood illness that lacks a clear biomarker, leading to disbelief and stigma from both medical professionals and society at large. Despite the devastating effects of ME being acknowledged by the National Institute for Health and Care Excellence (NICE), those living with the condition often struggle to find adequate support, even from close family and friends. Many face a lack of understanding from healthcare providers, resulting in a cycle of delegitimisation.
As part of my PhD research at the University of Birmingham, I am investigating how individuals with ME navigate social and community networks, both online and offline. With many ME patients turning to the internet for support more than those with any other long-term condition, my research seeks to explore the nature of these online networks. By uncovering how support is established and maintained in virtual spaces, and comparing it to offline relationships, I aim to reveal how these networks contribute to everyday life and wellbeing for people with chronic illness.
Understanding the dynamics of online social support offers the potential to improve healthcare strategies for ME patients. By integrating online support into management plans, health professionals can foster greater empathy and reduce the stigma that often surrounds this illness. Additionally, insights into offline relationships—with significant others, family, and society—will help develop more comprehensive support systems for both patients and their immediate networks.
My findings from a systematic scoping review on how people with ME/ CFS use the internet were published in the journal Fatigue: Biomedicine, Health & Behaviour in January this year. I am currently preparing a narrative review on offline social support for publication. This research has the potential to reshape how we understand and support the daily lives of those living with ME, offering a holistic approach that combines both online and offline strategies for improved social and emotional wellbeing.