Investigating the ME/CFS experience through qualitative analysis of memorial entries, 2026, Sirotiak, Amro

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Wyva

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Zoe Sirotiak, Hailey J. Amro

Abstract​

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an impairing chronic condition characterized by exhaustion and worsening symptoms following exertion, often accompanied by pain, sleep issues, and cognitive issues. Historically, ME/CFS was not considered to be linked to mortality, however, more recent studies have questioned this assumption. The National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation maintains a memorial list consisting of deceased individuals who had ME/CFS.

This secondary qualitative thematic analysis analyzed 505 entries on the National CFIDS Foundation memorial list, inductively developing a codebook from the publicly available memorial records. Two coders independently coded each entry before meeting to develop themes that incorporated the understanding of each coder. Themes emerged within four societal levels: systemic neglect and institutional failure; clinical neglect and failures; social disconnection and advocacy; and personal burden and quality of life. Describing systemic neglect and institutional failure, entries recounted a lack of acknowledgement by health, insurance, and disability authorities, as well as a lack of investment in research and treatment of ME/CFS at the federal level.

Negative healthcare experiences included misdiagnosis and misattribution of symptoms, dismissal, inadequate knowledge and experience with treating ME/CFS, and the recommendation of unhelpful treatments. The disbelief and misattribution by acquaintances described in the entries contributed to feelings of social isolation, leading some to turn to advocacy work and support groups. Entries also described the individual impact of the condition, including functional impairments, the impact of symptoms, management strategies, financial stress, and mental health symptoms. Some deaths were directly and indirectly attributed to ME/CFS by individuals with ME/CFS and their acquaintances. This analysis provides a glimpse of the lived experience as well as death of individuals with ME/CFS through the lens of acquaintances of the deceased, emphasizing the substantial impact of the condition.

Open access: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0343374
 
Made this summary of the paper:


1) Trigger warning: suicide
This paper analyzed 505 entries on the National CFIDS Foundation memorial list.
These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

2) One recurring theme was lack of recognition and respect from health institutions and authorities. Disability agencies come up a lot. For example: “The benefits agency made life hard, and the hurdles of having a disease so misunderstood left her depressed."

3) Dismissal by healthcare providers was another theme, causing some to avoid medical care:
“Her experiences with physicians who dismissed her complaints made her avoid them as much as possible and she was taken to a hospital by ambulance only when her pain became unbearable"

4) Patients were told that the illness was all in their head and some doctors were not willing to prescribe the necessary pain medication. Some said that medications or treatment with graded exercise therapy worsened their condition.

5) Another recurring theme is isolation by the illness. Some were "confined to one room and could not tolerate noise or light." Others saw a breakdown of social relationships such as a divorce, loss of friends, getting fired at work, etc.

6) Many entries also highlighted disbelief towards ME/CFS by social acquaintances. People didn't fully understand the impact of the disease. Sometimes the family was unsupportive and dismissed them as not really being ill.

7) One entry stated: "He was in his early 40s and had lost his job, wife, and family due to his illness”

Others mention the sigma caused by ME/CFS: “The guilt, shame, and suggestion of others that there was nothing wrong were destroying me more than the illness."

8 ) Loss of independence is another theme: some patients could no longer care for themselves. They had to move in with their parents or consider moving to a nursing home.

9) The entries also illustrate the context by which patients died by suicide, often noting hopelessness (life is going on without them), extreme pain, social isolation, loss of independence, and dismissal by doctors.

Some felt that ME/CFS had already taken their lives.

10) Link to the open-access paper, published in the journal PLOS One:
Sirotiak et al. 2026. Investigating the ME/CFS experience through qualitative analysis of memorial entries.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0343374
Link to the memorial list:
https://www.ncf-net.org/memorial
 
www.eurekalert.org

Memorials of people who died with extreme fatigue condition show shared themes

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...
www.eurekalert.org

News Release 22-Apr-2026

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

Peer-Reviewed Publication
PLOS



Investigating the ME/CFS experience through qualitative analysis of memorial entries
image:

A structural representation of emerging themes and their interrelationships.

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Credit: Sirotiak, Amro, 2026, PLOS One, CC-BY 4.0 (https://creativecommons.org/licenses/by/4.0/)

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.

Journal​

PLOS One

DOI​

10.1371/journal.pone.0343374

Method of Research​

Observational study

Subject of Research​

People

Article Title​

Investigating the ME/CFS experience through qualitative analysis of memorial entries

Article Publication Date​

22-Apr-2026

COI Statement​

The authors have declared that no competing interests exist.

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6) Many entries also highlighted disbelief towards ME/CFS by social acquaintances. People didn't fully understand the impact of the disease.​

It is often worse than that. They don't want to understand.

There are few conditions where ableism is so systemic, overwhelming, entrenched, and cruel.
 
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