Tag: epistemic injustice

Transforming biomedical uncertainty: the sociohistorical origins of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)

Abstract:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious and disabling long-term conditions characterised by uncertainty surrounding their aetiology, diagnosis and treatment. People with ME/CFS struggle to be understood, taken seriously and supported with their illness. At least since the 1990s, ME and CFS have been considered by many to be related, overlapping or synonymous with one another. However, the concepts originated from different sociohistorical contexts. This article disentangles the histories of ME and CFS, roots them in the UK and the USA respectively, and compares how they emerged as medical and scientific objects.

Drawing on a critical literature analysis of medical texts between 1950 and 1990, I explore how both ME and CFS materialised through the regulation of uncertainty within biomedical systems. In both cases, uncertainty was transformed into knowledge by systematically obscuring certain aspects of illness. These transformations shaped what could be known about these conditions in the decades to come and may be at the root of the epistemic injustices experienced by patients.

Those who campaign for more scientific research into ME/CFS should be wary of the propensity for biomedicine to generate ignorance in the face of these complex conditions. This analysis contributes to a growing body of research on the medical sociology of ignorance, further illustrating the value of uncertainty and ignorance as heuristic tools for understanding the politics of knowledge production within biomedical systems.

Source: Cross S. Transforming biomedical uncertainty: the sociohistorical origins of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Med Humanit. 2026 Aug 14:medhum-2025-013657. doi: 10.1136/medhum-2025-013657. Epub ahead of print. PMID: 42601195. https://pubmed.ncbi.nlm.nih.gov/42601195/

Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a chronic, disabling yet clinically “contested” condition, previously theorised through a lens of epistemic injustice. Phenomena conceptually close to epistemic injustice, including stigma, are known to have deleterious consequences on a person’s health and life-world. Yet, no known primary studies have explored how people with ME/CFS experience healthcare through a lens of epistemic injustice, whilst a dearth of research explicitly exploring healthcare-related injustice from a patient perspective has been noted. This qualitative study seeks to address this gap.

Semi-structured interviews and interpretative phenomenological analysis (IPA) were used to explore the experiences of five people with ME/CFS in the UK, vis-à-vis healthcare-related epistemic injustice. One superordinate theme is presented, “Being de-centred in patient-centred care,” alongside two sub-themes: “Struggling for epistemic-existential validation” and “Negotiating socio-epistemic hierarchies, politics and ‘power’.”

Findings suggest that healthcare-related epistemic injustice may differentially impact according to the patient’s social positionality (here, notably gender), and that a potential pathway of existential harm operates through threats to identity and personhood. Findings also indicate that cultural and political factors may further epistemic injustice in healthcare. Finally, epistemic injustice impacting as a chronic stressor cannot be ruled out and is worthy of further research.

The experience of healthcare-related epistemic injustice can carry far-reaching yet varied consequences for patients. Future research should consider drawing upon more socio-demographically diverse samples and an intersectional approach is recommended. Further exploration of structural drivers of epistemic injustice may highlight a need for politically and socio-culturally cognisant clinical approaches.

Source: Hunt, J., Runacres, J., Herron, D., & Sheffield, D. (2024). Exploring the Experience of Healthcare-Related Epistemic Injustice among People with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. The Qualitative Report, 29(4), 1125-1148. https://doi.org/10.46743/2160-3715/2024.6519 https://nsuworks.nova.edu/tqr/vol29/iss4/15/ (Full text available as PDF file)