ME/CFS Memorial List: Qualitative Thematic Analysis of 505 Entries

A qualitative thematic analysis of 505 entries from the National CFIDS Foundation memorial list for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The dataset, created by Zoe Sirotiak and last updated in April 2026, inductively develops a codebook from publicly available memorial records to explore themes of systemic neglect, clinical failures, social disconnection, and personal burden.

Use Cases

• Analyzing themes of systemic neglect and institutional failure based on descriptions of lack of research investment and acknowledgment by authorities.
• Studying patterns of clinical neglect and misdiagnosis based on entries recounting negative healthcare experiences.
• Investigating the link between social disconnection and patient advocacy based on descriptions of disbelief by acquaintances and support group involvement.
• Examining the personal burden of ME/CFS based on entries describing functional impairments, financial stress, and mental health symptoms.

Strengths

• Contains 505 analyzed entries from a memorial list, providing a substantial qualitative sample.
• Thematic analysis was conducted by two independent coders, which may improve reliability.
• Released under a permissive CC-BY-4.0 license, allowing for broad reuse.

Limitations

• Row count is unknown, which may limit suitability assessment.
• Column-level documentation is absent; field semantics must be inferred after download.
• Data is derived from a memorial list, which may reflect specific biases in reporting and perspective.

Provenance

Source

National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation memorial list.

Collection Method

Secondary qualitative thematic analysis of publicly available memorial records.

Time Range

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Freshness

Last updated 2026-04-22 17:22:40; freshness should be verified.

Geography

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