Chronic fatigue syndrome, also referred to as myalgic encephalomyelitis (CFS/ME), can have a profound effect on an individual’s life.
Researchers at Iowa State University have compiled memorial records of 505 individuals who lived with CFS/ME to offer insights into the experiences of millions of patients globally.
Their goal is to gain “a deeper understanding of the lived experiences and deaths of those with ME/CFS.”
From the accounts of family and friends, which are publicly available on the National Chronic Fatigue and Immune Dysfunction Syndrome Foundation memorial page, four main themes emerged.
The identified themes were systemic neglect and institutional failure, clinical neglect and failure, social disconnection, and personal burden.
Though these individuals did not necessarily die from CFS/ME, the disease appeared to significantly impact their quality of life, affecting their functionality, financial stability, and mental health.
Family and friends also reflected on how the disease influenced their loved ones’ passing.
“Some shared hope and remembrance of the progress that the deceased individuals sought,” write kinesiologist Zoe Sirotiak and psychologist Hailey Amro in their review, “while others shared anguish, grief, and anger at the systems that they perceived as contributing factors to the lived experience and often death of individuals with ME/CFS.”
For many years, CFS/ME was not recognized as a ‘biological’ condition because no physical markers could be detected in the body.
Consequently, patients with CFS/ME were often told their symptoms were psychosomatic.
Today, there is growing evidence that CFS/ME is a biological disease, with clear and measurable effects on both the brain and body, even though a definitive diagnostic tool is still lacking.
Despite this, research into CFS/ME does not reflect the scale of its impact on patients’ lives. Experts assert that the US National Institutes of Health (NIH) should increase research funding by 40-fold to match the true burden of the disease.
The recent review highlighted prevalent feelings of hopelessness and frustration due to insufficient resources.
The memorial entries revealed that patients encountered major institutional barriers to recognition and funding, faced difficulties with insurance payments, and struggled to obtain legal disability status.
Common issues included isolation and loss of friendships, coupled with a lack of competent healthcare and dismissal by family and acquaintances.
“The substantial challenges faced by individuals with ME/CFS have been suggested to influence suicide risk, and our analysis supports this conclusion,” Sirotiak and Amro write.
“The entries on the memorial list illustrated the contexts in which individuals died by suicide, often noting contributing factors such as hopelessness, pain, social isolation, loss of independence, and dismissal or poor treatment by healthcare providers.”
Related: Brain Pattern Reveals Why Chronic Pain Leads to Depression
To underscore the profound impact of the disease, Sirotiak and Amro conclude their review with a father’s poignant words:
“Her father … was quoted saying his daughter lived with ‘intractable and unrelenting pain’ and, though he certainly was not happy to see his only child die, ‘There are things in this world worse than death.'”
The study was published in PLOS One.
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