What is the background to this research?
Fibromyalgia is a condition involving persistent widespread pain, fatigue, sleep problems, and cognitive difficulties. People with fibromyalgia consistently report feeling dismissed by healthcare practitioners, being told "there's nothing wrong" despite having debilitating symptoms, and struggling to get proper support. While previous research has documented these individual experiences, there has been little analysis of why these problems happen so consistently across the healthcare system - suggesting they might be systematically organised rather than just random occurrences.
What did we want to find out?
Our researchers wanted to understand how the neglect experienced by people with fibromyalgia is socially organised through healthcare systems. Rather than focusing on individual experiences alone, they aimed to map the larger institutional forces and systems that coordinate how healthcare practitioners respond to fibromyalgia patients.
What did we do?
PACFiND researchers used a novel approach called "Sociology for People" (developed by the sociologist, Dorothy E Smith) to conduct a systems-focused literature review. Starting from the standpoint of people with fibromyalgia, they analysed existing research to identify patterns in what patients have to do (like "legitimacy work" - constantly trying to prove their symptoms are real) and how practitioners respond. They then expanded their search to include practitioner accounts and broader critiques of healthcare systems. This approach allowed them to trace connections between individual experiences and the larger institutional systems that shape healthcare delivery.
What did we find?
The research revealed that biomedical healthcare systems systematically organise the withdrawal of support from people with fibromyalgia. When symptoms cannot be explained through standard biomedical testing, practitioners are compelled by efficiency-driven systems to move quickly from "nothing is wrong" (no biomedical cause found) to "nothing can be done." To justify this withdrawal of support, practitioners often reframe fibromyalgia as a "psychological" problem, which transfers responsibility from the healthcare system to patients themselves. This creates additional burden for patients, who must then prove not only that their symptoms are real, but that they are morally worthy of help. The study mapped how these ruling systems coordinate neglect across different healthcare settings.
Why does this research matter?
This research shifts the focus from blaming individual practitioners or patients to understanding how healthcare systems themselves create barriers to care. By identifying the institutional forces that organise neglect, it provides a roadmap for targeting interventions at the system level rather than just trying to improve individual interactions. The findings suggest that simply advocating for better communication or more patient-centred care won't be enough - fundamental challenges to biomedical systems and ideology are needed to promote alternative models of care. The research also demonstrates a valuable new method for literature review that could be applied to the analysis of other healthcare problems.
Who funded this study?
This study is part of the PACFiND programme of work which is funded by Versus Arthritis.
Where can I read more?
Click here to read the full research paper.