Coded Memorial Entries: 505 ME/CFS Memorial List Thematic Analysis

505 memorial entries from the National CFIDS Foundation were qualitatively analyzed to explore the societal and personal impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Zoe Sirotiak published this secondary thematic analysis on figshare in April 2026, coding entries to develop themes around systemic neglect, clinical failures, social disconnection, and personal burden. The dataset provides a structured view of lived experiences and deaths as described by acquaintances of the deceased.

Use Cases

• Analyze themes of systemic neglect and institutional failure based on descriptions of lack of research investment and disability authority acknowledgment.
• Study patterns of clinical neglect and misdiagnosis based on coded entries recounting negative healthcare experiences.
• Explore the relationship between social disconnection and advocacy based on themes of disbelief and isolation leading to support group involvement.
• Investigate the personal burden of chronic illness based on coded descriptions of functional impairments, financial stress, and mental health symptoms.

Strengths

• 505 memorial entries provide a substantive qualitative sample.
• Analysis developed themes across four distinct societal levels, suggesting a structured coding framework.
• Data is openly available under a CC-BY-4.0 license.

Limitations

• Row count and column-level documentation are unknown, requiring manual inspection after download.
• The dataset's 175.9 KB size indicates a limited scope, containing coded themes rather than raw memorial text.
• Data reflects perspectives from a single memorial list, which may introduce source bias.

Provenance

Source

National CFIDS Foundation memorial list.

Collection Method

Secondary qualitative thematic analysis; two coders independently developed a codebook from publicly available memorial records.

Time Range

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Freshness

Last updated 2026-04-22 17:22:39

Geography

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