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

Authors

  • Razan Yousif Department of Psychology, University of Alaska, United States
  • Leonard Jason DePaul University, United States http://orcid.org/0000-0002-9972-4425

DOI:

https://doi.org/10.47679/jopp.8214782026

Keywords:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, person-first language, identity-first language, language patterns, stigma

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.

Author Biographies

Razan Yousif, Department of Psychology, University of Alaska

RY is finishing her BA at the University of Alaska and she completed this research while interning at the Center for Community Research, DePaul University, during the summer.

Department of Psychology, University of Alaska, PO Box 756450, Fairbanks, AK 99775

Leonard Jason, DePaul University

LAJ is a professor of psychology at DePaul University and the director of the Center for Community Research.  He has focused his work on post-viral illnesses and ME/CFS for over 30 years

References

American Psychological Association. (2020). Publication manual of the American Psychological Association: The official guide to APA style (7th ed.).

Bhatia, S., & Jason, L. A. (2023). Using data mining and time series to investigate ME and CFS naming preferences. Journal of Disability Policy Studies, 35(1), 65-72. https://doi.org/10.1177/10442073231154027 (Original work published 2024)

Botha, M., Hanlon, J., & Williams, G. L. (2023). Does language matter? Identity-first versus person-first language use in Autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 53(2), 870–878. https://doi.org/10.1007/s10803-020-04858-w

Carruthers, B.M., Jain, A.K., De Meirleir, K.L., Peterson, D.L., Klimas, N.G., Lemer, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles, A.C.P., Sherkey, J.A., van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols (Canadian case definition). Journal of Chronic Fatigue Syndrome, 11(1):7–115.

Carruthers, B.M., van de Sande, M.I., De Meirleir, K.L., Klimas, N.G., Broderick, G., Mitchell, T., Staines, D., Powles, A.C.P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, DS., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A.R., Marshall-Gradisbik, S., Mena, I., Mikovits, J.A., Miwa, K., Murovska, M., Pall, M.L., Stevens, S. (2011). Myalgic encephalomyelitis: International consensus criteria. Journal of Internal Medicine, 270(4):327–338.

Coalition for Diversity and Inclusion in Scholarly Communications (C4DISC). (2022). Guidelines on inclusive language and images in scholarly communication. https://c4disc.pubpub.org/pub/8olmuvdm

Davis, L. J. (2013). The disability studies reader (4th ed.). Routledge.

Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology & Health, 22(7), 851–867. https://doi.org/10.1080/14768320600976224

Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255–264. https://doi.org/10.1037/a0038636

Garland-Thomson, R. (2005). Disability and representation. PMLA, 120(2), 522–527.

Geraghty, K. J., & Blease, C. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disability and Rehabilitation, 41(25), 3092–3102. https://doi.org/10.1080/09638288.2018.1481149

Green, J., Romei, J., & Natelson, B. H. (1999). Stigma and chronic fatigue syndrome. Journal Of Chronic Fatigue Syndrome, 5(2), 63–75. https://doi.org/10.1300/J092v05n02_04

IOM (Institute of Medicine). 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press.

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462. https://doi.org/10.1177/1362361315588200

Linton, S. (1998). Claiming disability: Knowledge and identity. NYU Press.

Lorusso, L., Mikhaylova, S. V., Capelli, E., Ferrari, D., Ngonga, G. K., & Ricevuti, G. (2009). Immunological aspects of chronic fatigue syndrome. Autoimmunity Reviews, 8(4), 287–291. https://doi.org/10.1016/j.autrev.2008.08.003

Looper, K. J., & Kirmayer, L. J. (2004). Perceived stigma in functional somatic syndromes and comparable medical conditions. Journal of Psychosomatic Research, 57(4), 373–378. https://doi.org/10.1016/j.jpsychores.2004.03.005

McPherson, K. A., Reddy, A. K., Sajjadi, N. B., Deboy, K., Gajjar, S., Lad, M., & Hartwell, M. (2023). Person-centred language and HIV research: A cross-sectional examination of stigmatising terminology in medical literature. Sexually Transmitted Infections, 99, 110–115. https://doi.org/10.1136/sextrans-2021-055391

Richman, J. A., Flaherty, J. A., & Rospenda, K. M. (1994). Chronic fatigue syndrome: have flawed assumptions been derived from treatment-based studies? American Journal of Public Health, 84(2), 282–284. https://doi.org/10.2105/ajph.84.2.282

Shakespeare, T. (2013). Disability rights and wrongs revisited (2nd ed.). Routledge.

Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565-570. https://doi.org/10.1177/13623613221130845

The Lancet HIV. (2023). Putting people first in communication about HIV. The Lancet HIV, 10(10), e623. https://doi.org/10.1016/s2352-3018(23)00237-0

Titchkosky, T. (2011). The question of access: Disability, space, meaning. University of Toronto Press.

Ware, N. C. (1992). Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6(4), 347–361. https://doi.org/10.1525/maq.1992.6.4.02a00030

Downloads

Published

2026-05-20

How to Cite

Yousif, R., & Jason, L. (2026). How Individuals with ME/CFS Are Referred to in Medical Research: A Content Analysis of Identity-First and Person-First Language. Journal of Psychological Perspective, 8(2), 99–104. https://doi.org/10.47679/jopp.8214782026

Issue

Vol. 8 No. 2 (2026)

Section

Original Research Articles

Citation Check

License

Copyright (c) 2026 Razan Yousif, Leonard A. Jason

Creative Commons License

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Copyright Policy

Journal of Psychological Perspective (JOPP) is committed to promoting academic freedom and open access. To that end, we apply a copyright policy that empowers authors while ensuring the broad dissemination and responsible reuse of published work.

  • Authors retain the full copyright of their published manuscripts.
  • By publishing in JOPP, authors grant the journal the right of first publication, with the work simultaneously licensed under the Creative Commons Attribution-ShareAlike 4.0 International License (CC BY-SA 4.0).
  • This license permits others to:
    • Share (copy and redistribute the material in any medium or format),
    • Adapt (remix, transform, and build upon the material for any purpose, even commercially),
    • As long as appropriate credit is given, a link to the license is provided, and derivative works are distributed under the same license.
  • Authors may:
    • Deposit and share the published version of their work in institutional repositories or personal websites.
    • Enter into separate, non-exclusive distribution agreements, provided that original publication in JOPP is properly cited.

Licensing and Copyright for Data Publication

To promote transparency, reproducibility, and ethical integrity in research, Journal of Psychological Perspective adopts the following policies regarding the publication of research data:

  • Copyright Ownership: Authors retain copyright over the datasets they submit or make available in connection with their articles.
  • Default License: All data associated with a published manuscript must be shared under the Creative Commons Attribution-ShareAlike 4.0 International License (CC BY-SA 4.0), unless otherwise agreed upon with the editor.
  • Permitted Use: This license allows others to use, modify, and distribute the dataset (including for commercial purposes), provided that attribution is given to the original authors and that derivative works are shared under the same terms.
  • Repository: Authors are strongly encouraged to deposit copies of their accepted manuscripts in institutional repositories or subject-specific archives. (e.g., OSF, Zenodo, Figshare) and include citations and links to the datasets in the article.
  • Ethical and Legal Responsibility: Authors must ensure:
    • The data shared do not breach confidentiality, privacy, or legal agreements.
    • Informed consent has been obtained where necessary.
    • Data have been properly anonymized where applicable.
  • Alternate Licenses: In exceptional cases, alternative data licenses (e.g., CC0, Open Data Commons) may be considered upon editorial approval. A written justification must be submitted and published alongside the article.
  • Corrections or Retractions: If issues related to published data arise (e.g., ethical breaches, significant errors), JOPP reserves the right to take corrective action in accordance with the COPE Retraction Guidelines. Please read our policy about retraction of articles

Similar Articles

1 2 3 4 > >> 

You may also start an advanced similarity search for this article.