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

Area of Science:

• Medical Research
• Public Health
• Sociology

Background:

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness.
• Historically, ME/CFS was not considered a cause of mortality.
• Recent evidence suggests a potential link between ME/CFS and mortality.

Purpose of the Study:

• To analyze memorial records of deceased individuals with ME/CFS.
• To identify themes related to the lived experiences and deaths of ME/CFS patients.
• To understand the societal and personal factors impacting ME/CFS mortality.

Main Methods:

• Secondary qualitative thematic analysis of 505 memorial entries from the National CFIDS Foundation.
• Inductive codebook development by two independent coders.
• Thematic analysis across societal levels: systemic, clinical, social, and personal.

Main Results:

• Themes included systemic neglect, institutional failure, clinical neglect, social isolation, and personal burden.
• Patients faced lack of acknowledgement, research funding, and inadequate healthcare.
• Social disbelief and functional impairments contributed to isolation and stress.

Conclusions:

• ME/CFS significantly impacts quality of life and can be associated with mortality.
• Systemic and clinical neglect, alongside personal burdens, exacerbate the condition's severity.
• Further research and improved healthcare systems are crucial for ME/CFS patients.