NEW DELHI, Apr 23: An analysis of memorial records of 505 people who lived with chronic fatigue syndrome has revealed themes of systemic and clinical neglect, personal burden and quality of life, among others.
Findings published in the journal PLOS One also point to themes of institutional failure, including a lack of acknowledgement by health and insurance authorities, and a social disconnection.
Researchers from the US’ Iowa State University analyzed entries in the National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation’s publicly available list of memorial records for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The chronic condition is characterised by symptoms of severe exhaustion, often along with sleep and cognitive difficulties — but there is a lack of clarity around its diagnosis and treatment.
“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,” the authors wrote.
On the theme of systemic neglect and institutional failure, memorial records recounted a lack of acknowledgement by health, insurance, and disability authorities, and a lack of investment in research and treatment of ME/CFS at the government level, they said.
One record 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.”
The researchers also pointed to negative healthcare experiences of the affected, which included a misdiagnosis and misattribution of symptoms, dismissal, an inadequate knowledge and experience with treating ME/CFS, and a recommendation of unhelpful treatments.
The team found another record on the theme of personal burden and quality of life that 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 authors said insights from the study could help guide further ME/CFS research.
They added that analysing more than 500 memorial entries revealed 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,” the team said.
Memorial narratives can offer a 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,” the authors said.
“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,” they said. (PTI)
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