ME/CFS Memorial List Thematic Analysis of 505 Entries

A 2026 thematic analysis by Zoe Sirotiak of 505 entries from the National CFIDS Foundation memorial list for deceased individuals with ME/CFS. The dataset, shared under a CC-BY-4.0 license, provides a qualitative glimpse into the lived experience and deaths of individuals with ME/CFS through the lens of acquaintances. It identifies themes across systemic, clinical, social, and personal levels.

Use Cases

• Analyze systemic barriers in healthcare and disability systems based on descriptions of institutional neglect.
• Study patterns of clinical misdiagnosis and dismissal based on recounted negative healthcare experiences.
• Explore the relationship between social isolation and patient advocacy based on themes of social disconnection.
• Investigate the personal and financial burden of chronic illness based on descriptions of functional impairments and stress.

Strengths

• Contains 505 qualitatively coded entries providing a substantial sample for thematic analysis.
• Data is derived from a specific, maintained source: the National CFIDS Foundation memorial list.
• The analysis was conducted by two independent coders, which may enhance reliability.

Limitations

• Row count is unknown, which may limit suitability assessment for quantitative tasks.
• Column-level documentation is absent; field semantics must be inferred after download.
• The data reflects a specific, non-random sample (memorial list entries) which may introduce bias.

Provenance

Source

National CFIDS Foundation memorial list.

Collection Method

Secondary qualitative thematic analysis of publicly available memorial records.

Time Range

Temporal coverage of the source memorial list is not specified.

Freshness

Last updated 2026-04-22 17:22:42; freshness should be verified.

Geography

Spatial coverage is not specified, but the source foundation is U.S.-based.