Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Hunt

Abstract:
Whilst myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has recently attracted high-profile media coverage, dominant accounts do not tell the whole story of how this group of disabled people came to occupy – albeit unequally – society’s fringes. This article, platforming some of the sidelined work of disabled activist-scholars, offers an understanding of oppressions confronting people with ME/CFS that is more inclusive of the politics impacting wider marginalised communities, offering possibilities for coalition-building with other social movements. Moreover, overlooked literature reveals intersecting power systems that differentially shape how ME/CFS is experienced, promoting an understanding of disability/impairment more inclusive of diversity. Inspired by the exhortation of Mike Oliver to record our own histories – lest they be written for us – this contribution seeks to challenge hierarchies and exclusions confronting the author as an academically-sidelined person with ME/CFS.

Link | PDF (Disability & Society, April 2025, open access)

 

https://www.uu.se/en/contact-and-organisation/staff?query=N23-2233

 

I understand that the social sciences has it’s own lingo, but I really wish their writing could be more accessible.

 

The following intro to ME/CFS might be useful. Line breaks added.

——————

Suspected virally-mediated cases of ME/CFS (under a variety of diagnostic labels) can be traced back to at least the 1930s, with the diagnosis of ‘ME’ being classified by the World Health Organisation as a neurological (biomedical) condition in 1969 (see Kennedy Citation2012; Wendell Citation1996).

This diagnostic entity was re-constructed as ‘mass hysteria’ by two male psychiatrists, with the gender-stereotyped rationale that most patients experiencing symptoms in a high-profile outbreak (at London’s Royal Free Hospital) were women.

Further oppression of people with ME/CFS followed in the late 1980s and early 1990s, notably associated with a group of influential, elite UK psy actors who re-constituted ME as ‘CFS’.

This change of nomenclature accompanied the promotion of a particular variant of biopsychosocial framework and a narrative of psychological perpetuation that has become dominant within and beyond the UK.

More precisely, biopsychosocial discourse constitutes ME/CFS as perpetuated by ‘maladaptive’ psychology that is potentially recoverable through psychosocial (cognitive-behaviourally inspired) interventions developed by biopsychosocial proponents (Kennedy Citation2012).

A ‘paradigm conflict’ dynamic has thus arisen in knowledge-producing spaces, whereby biomedical and biopsychosocial frameworks compete (see Hughes, Lubet, and Tuller Citation2023).

 

Quite funny given they have accessible tools to be able to listen to the article. But then use language to make it quite inaccessible. While talking about how the perspectives of some are excluded.

 

Seems like that’s the case. It gets slightly easier to read after the intro, and it’s very well argued.

@rvallee this is right up your alley.

 

Thanks @Trish Good to know.

It felt like the intention was good but I got quickly lost. I say this as a child of someone with a PhD in the social sciences! I understand the need for specialist language to be specific or if describing something new, but sometimes (in all fields to be fair) it just seems unnecessary and a barrier for a wider audience.