Researchers examined the memorial records of 505 people who passed away after living with the chronic illness known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Their analysis reveals common themes around systemic, clinical, social, and personal experiences and challenges. Zoe Sirotiak and Hailey Amro of Iowa State University, U.S., present these findings in the open-access journal PLOS One on April 22, 2026.
People with ME/CFS experience severe exhaustion, often alongside pain, sleep issues, and cognitive difficulties, but there has been a lack of clarity around diagnosis and treatment. Limited prior research suggests that people with ME/CFS might also be at risk of earlier death.
To provide further insight into the experiences of people living with ME/CFS, Sirotiak and Amro analyzed 505 entries in the National Chronic Fatigue and Immune Dysfunction Syndrome Foundation’s publicly available list of memorial records for people with ME/CFS. They used an approach known as inductive coding to develop shared themes emerging from the memorials, which were left by family and loved ones.
The analysis resulted in four themes: systemic neglect and institutional failure, clinical neglect and failures, social disconnection and advocacy, and personal burden and quality of life.
For instance, on the theme of systemic neglect and institutional failure, memorials described a lack of research investment, and failures of healthcare, insurance, and disability systems to acknowledge ME/CFS. One stated, “[She] had found some help at the only hospital in [county] that treats CFIDS/ME but was denied funding by her local health authority for any further treatment and her health deteriorated dramatically.”
On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””
The researchers note that this analysis was qualitative with significant potential for bias, as the memorials were reported by acquaintances who chose to submit them to an advocacy organization. However, they hope that these insights could help guide further ME/CFS research.
The authors add: “By analyzing more than 500 memorial entries, we found that people living with ME/CFS were affected not only by impairing symptoms, but also by widespread systemic, clinical, and social neglect. These narratives suggest that dismissal, stigma, misdiagnosis, and lack of institutional support not only impair quality of life but are frequently perceived as playing a role in the circumstances surrounding death of individuals with ME/CFS.”
“Memorial narratives offer unique insight into lived experiences not captured in clinical records or epidemiological statistics, a gap that is particularly significant for a condition that has historically been poorly understood.”
“What struck us most was the consistency with which people with ME/CFS were described as having been dismissed or misheard by systems intended to help them.”
In your coverage, please use this URL to provide access to the freely available article in PLOS One : https://plos.io/4cE4yro
Citation: Sirotiak Z, Amro HJ (2026) Investigating the ME/CFS experience through qualitative analysis of memorial entries. PLoS One 21(4): e0343374. https://doi.org/10.1371/journal.pone.0343374
Author countries: U.S.A.
Funding: The author(s) received no specific funding for this work.
PLOS One
Observational study
People
Investigating the ME/CFS experience through qualitative analysis of memorial entries
22-Apr-2026
The authors have declared that no competing interests exist.