What the current model cannot yet establish — named explicitly rather than left to be discovered.
Survey respondents were recruited via patient communities already concerned with mast cell disorders, lipedema, hEDS or POTS — not via a random general-population sample. Reported proportions (e.g. 96% female) reflect the composition of these communities, not necessarily true population prevalence.
Diagnoses, symptoms and history reported in the survey are self-reported and have not been verified against clinical examination or independent medical records.
The survey captures a snapshot at one point in time. Observed associations (e.g. childhood trauma and terrain severity) are correlations, not strict proof of causality.
Questions about childhood or infancy (trauma, perinatal events) rely on retrospective recall, potentially influenced by the respondent's current health state.
Both PMCHS preprints have not yet undergone peer review. They are shared as-is, with this explicit caveat, to enable open discussion and critique while the work continues.
This research is conducted independently, with no academic affiliation or institutional funding — which is part of why medRxiv initially declined publication. This doesn't invalidate the data, but readers should know it.
Some analyses by specific phenotype or comorbidity rely on subsamples smaller than N=423, with wider margins of error.
The PMCHS framework has already been revised several times since April 2026 (see Model evolution). What's presented today is not a final version — it's the current state of ongoing work.