Thesis Suffering in Cyberspace: Biopolitics, Habitus and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), 2026, Fuest

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Suffering in Cyberspace: Biopolitics, Habitus and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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Fuest, H (2026) Suffering in Cyberspace: Biopolitics, Habitus and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Doctoral thesis, Liverpool John Moores University.

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Abstract

This thesis investigates how people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) use digital environments to communicate suffering, build community, and challenge the institutional disbelief that surrounds their illness. Drawing on digital ethnography, illness journals, and qualitative interviews, it explores how online interaction becomes a site of knowledge production, care, and political action.

The study introduces the concept of suffering-capital to describe how the emotional and communicative labour of illness generates value and legitimacy within moral and bureaucratic economies. It develops the idea of a political–biosocial habitus, drawing on and reworking Bourdieusian conceptions of habitus and capital, showing how digital illness publics consciously cultivate shared dispositions and forms of expertise that reconfigure the field of health knowledge. Together, these frameworks illuminate how power, visibility, and care are negotiated through digital practice.

Empirically, the research traces how people with ME/CFS transform isolation into collective infrastructure through platforms such as MEpedia, online benefits forums, and campaigns like Millions Missing. Within these spaces, participants collaboratively curate and test treatment protocols, translating biomedical research into practical guidance and shared care strategies. The analysis reveals how welfare bureaucracy converts impairment into administrative labour, and how patients counter this through acts of solidarity, creativity, and mutual expertise.

The thesis extends disability theory by integrating embodied fluctuation and relational ethics into the social model, culminating in a frailty-informed relational model of care. This model reframes frailty as an inclusive, co-produced framework for chronic illness policy and practice. Overall, the study contributes to disability studies, digital sociology, and medical humanities by demonstrating how suffering, when collectively mediated, becomes a source of resistance, knowledge, and social transformation.

Item Type:Thesis (Doctoral)
Uncontrolled Keywords:Critical ME Studies; Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); Digital Ethnography; Disability Studies; Digital Health Activism; Patient Expertise; Biosociality; Medical Humanities; Welfare Bureaucracy; Relational Care; Suffering-Capital; Political–Biosocial Habitus; Online Communities; Digital Sociology
Subjects:H Social Sciences > H Social Sciences (General)
H Social Sciences > HT Communities. Classes. Races
Divisions:Humanities and Social Science
Date of acceptance:4 June 2026
Date of first compliant Open Access:9 June 2026
Date Deposited:09 Jun 2026 12:36
Last Modified:09 Jun 2026 12:36
DOI or ID number:10.24377/LJMU.t.00028761
Supervisors:Hassan, N, Ogden, C and Tyrer, D
URI:https://researchonline.ljmu.ac.uk/id/eprint/28761

 

[Jonathan Edwards]

political–biosocial habitus

Does that mean talking with friends?

 

[Yann04]

Very roughly if I remember my intro to social theory class correctly it means the structure of how you perceive things (ie. your socially constructed world) — in this case focusing on the political, social, and biological.

I have to say though that is one jargon heavy abstract!

 

[Jonathan Edwards]

Very roughly if I remember my intro to social theory class correctly it means the structure of how you perceive things (ie. your socially constructed world) — in this case focusing on the political, social, and biological.

I looked it up and it seems to be more the routine of things you get used to doing - like talking with friends.

 

[Yann04]

I looked it up and it seems to be more the routine of things you get used to doing - like talking with friends.

The way I learnt it was further than habits / experiences; I found my old notes haha. This is what i had written:

Your socially constructed World. In the sense of the structure of how you percieve things.
Analogy: an internalised, personal Overton window — the embodied version of what feels possible, appropriate, or realistic for me, given my social position.
But habitus goes much deeper: it’s not just about opinions, but about Perception itself — what we notice, value, or even recognise as a choice.

 

[Jonathan Edwards]

Wikipedia:
In sociology, habitus (/ˈhæbɪtəs/) is the way that people perceive and respond to the social world they inhabit, by way of their personal habits, skills, and disposition of character.

 

[Utsikt]

Empirically, the research traces how people with ME/CFS transform isolation into collective infrastructure through platforms such as MEpedia, online benefits forums, and campaigns like Millions Missing.

That’s a weird way of saying people that are physically isolated connect with other people online.

Within these spaces, participants collaboratively curate and test treatment protocols, translating biomedical research into practical guidance and shared care strategies.

Well, they try to at least. Some of the care strategies are probably valid, but most of the biomedical stuff isn’t. Although that’s primarily the fault of the researchers that don’t do a better job or completely oversell their work, with some responsibility among the influencers that go beyond their expertise.

The analysis reveals how welfare bureaucracy converts impairment into administrative labour, and how patients counter this through acts of solidarity, creativity, and mutual expertise.

Another weird way of saying that patients help each other with the tasks they are forced to do by the institutions.

Overall, the study contributes to disability studies, digital sociology, and medical humanities by demonstrating how suffering, when collectively mediated, becomes a source of resistance, knowledge, and social transformation.

This is backwards. Suffering doesn’t become a source of resistance and knowledge, it creates the need for it.