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. 2025;13(2):1-11.
doi: 10.1080/21641846.2024.2444826.

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Dana J Brimmer  1 , Jin-Mann S Lin  1 , Elizabeth R Unger  1
Affiliations

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Dana J Brimmer et al. Fatigue. 2025.

Abstract

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results: Over four years, eight VOP stories were completed and posted on CDC's ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

Keywords: Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS); Qualitative methods; Voice of the Patient (VOP).

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Conflict of interest statement

Notes on contributors Dana J. Brimmer, a Behavioral Scientist and Visiting Scientist with the Chronic Viral Diseases Branch, Centers for Disease Control and Prevention, focuses on mixed study designs that include qualitative methods, and health behavior and communication theory. In addition to the evaluation of outreach programs, her focus in ME/CFS has been in healthcare provider education and raising awareness about the illness. Jin-Mann S. Lin, a Senior Consultant and Mathematical Statistician at the Chronic Viral Diseases Branch, Centers for Disease Control and Prevention, specializes in epidemiology, statistics, and survey methodology. She also has experience in health service research for ME/CFS, including economic burden and healthcare utilization barriers. She is a member of the ME/CFS Common Data Elements project sponsored by the CDC and NIH. Elizabeth R. Unger, a pathologist by training, is the Chief for the Chronic Viral Diseases Branch, Centers for Disease Control and Prevention, where the ME/CFS program is located. Under her leadership, the CDC has conducted explorations of the underlying biologic basis of ME/CFS while continuing research, education, and surveillance of the illness. In addition to ME/CFS, she is a subject matter expert in HPV as a public health problem. Disclosure statement No potential conflict of interest was reported by the author(s).

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