Sign In
International
News release
From:
Memorials of people who died with extreme fatigue condition show shared themes
New analysis of the unusual dataset highlights similar systemic, clinical, social, and personal experiences
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.”
Expert Reaction
These comments have been collated by the Science Media Centre to provide a variety of expert perspectives on this issue. Feel free to use these quotes in your stories. Views expressed are the personal opinions of the experts named. They do not represent the views of the SMC or any other organisation unless specifically stated.
Associate Professor Mona Jeffreys, Faculty of Education, Health, and Psychological Sciences, Victoria University of Wellington
"The findings of this study resonate strongly with those reported in our research based in Aotearoa New Zealand. Each of the subthemes, such as a lack of research investment, negative experiences of health care, and the need for self-advocacy, are areas that have been described to us by people living with long COVID and/or ME/CFS.
"The implications of this study are of direct relevance to Aotearoa New Zealand. Changes are needed at a systemic level. This includes increased research funding, improved medical education, and holistic approaches to care with better integration of health, social and disability systems.
"The approach this study has taken puts patients at the centre, and considers the effect on an individual of their immediate environment, social structures, and systematic influences, as well as changes over time.
"The study thematically analysed the comments made by family and friends, on publicly available memorial pages for people with ME/CFS (more commonly referred to as CFIDS in the US). A total of 505 entries were thematically analysed. Four high level themes were identified: i) Systemic neglect and institutional failure; ii) Clinical neglect and failure; iii) Social disconnection and the need for advocacy; and iv) Personal burden and quality of life.
"The scientific method used was appropriate and well described. The authors identify the limitation of the data source, noting that entries were affected by the interpretation and perceptions of the person who wrote the entry. They also acknowledge the selection bias of the CFIDS page as a source of data."
Attachments
Note: Not all attachments are visible to the general public. Research URLs will go live after the embargo ends.
