How Individuals with ME/CFS Are Referred to in Medical Research: A Content Analysis of Identity-First and Person-First Language, 2026, Yousif, Jason

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How Individuals with ME/CFS Are Referred to in Medical Research: A Content Analysis of Identity-First and Person-First Language

Razan Yousif, Leonard Jason

Abstract
This study examined the use of person-first and identity-first language in published Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) medical research articles. Person-first language emphasizes the individual before their condition (e.g., “person with diabetes”), whereas identity-first language foregrounds the condition (e.g., “diabetic”). Because language has been discussed as a potential contributor to stigma in some chronic illness and disability contexts, documenting language patterns in the scientific literature may provide insight into how individuals are represented.

The current study analyzed how individuals with ME/CFS were described in a sample of 85 medical research articles. Across these articles, references to individuals with ME/CFS appeared 3,211 times.

Identity-first language was the most frequently used form of terminology (61.9%), followed by person-first language (22.9%) and other descriptors (15.2%). Most articles (72.9%) used both identity-first and person-first language.

These findings highlight prevailing linguistic patterns in the ME/CFS research literature and underscore the importance of continued examination of language use in scientific communication.

Web | DOI | PDF | Journal of Psychological Perspective | Open Access
 
Yes, I don't think it's that much of a problem whether we are referred to as 'people with ME/CFS' or 'ME/CFS patients'. If we think about MS, there isn't much stigma related to 'MS patient'. It's not the 'patient' bit that brings most of the stigma to 'ME/CFS patient'.

I definitely agree @RainbowCloud.

An investigation that recorded instances of people with ME/CFS being abused by doctors and researchers in various situations would have been a lot more useful and hard-hitting. I remember the sign recruiting patients for a study of female hormone levels that was tacked up in a clinic with the title 'Are women with CFS ovary-reacting?'.

I'd like to see an investigation into how psychometric surveys measuring 'catastrophic thinking' influence opinions about people who are facing or have in fact already lost significant parts of their current and future wealth, identity and family.

I'd like to see an investigation into what the words 'boom and bust' and 'pacing' mean to people with ME/CFS, clinicians and family members. I'd like to see an analysis of the obfuscatory names used for hysteria throughout the last century, including MUPS, and the memorable conference with its reference to MUPpets.

I'd like to see an analysis of the research project acronyms including 'the SMILE trial', 'PACE' (with its intention to prove that pacing was not as good as the alternatives), and various others that conveyed a sense of coming to the aid of the pathetically helpless and pathologically negative people with ME/CFS (was there a LIFT?).

I can think of so many more things related to language that are more important to focus on than the topic of this paper. The topic actually trivialises the brutal issues the ME/CFS community faces with respect to the way language is used.
 
RainbowCloud said:
I wish someone would record some qualitative research about how we’re referred to in doctors forums – the disdain and ridiculing is appalling when they think no one is looking!
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That would definitely have been far more useful. The sanitized version analyzed here only hides the true feelings. Maybe not strictly medical forums, but the only value in doing this is in getting what they really think of us, when they think none of us are listening, when they feel safe enough to drop the dog whistles and say what they actually want to say.

Many of the best sources would be private presentations shown to other physicians, not meant for publication. This is where the true feelings show up. Also what's in medical notes, although far more representative is what is said, but not written down. This would require patients sharing them, so lots of ethical issues, but wow are they far more representative of reality than the sanitized version put out for public consumption.

There are plenty of studies of that, already, with quotes from physicians that patients share in qualitative studies, but they're never in proper context.
 
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