About This Registry

The Dysautonomia Research Registry is an independent, non-affiliated academic reading list built around the peer-reviewed literature on POTS, ME/CFS, Ehlers-Danlos syndrome, and related autonomic conditions. It is not a clinic, not a patient portal, and not a commercial venture. No services are sold here. The registry exists solely to make the science behind these conditions easier to find, read, and understand.

The problem this site addresses is a persistent gap in how information about these conditions is distributed. Most publicly available content falls into one of two categories: simplified patient-facing articles that gloss over mechanism, or primary research papers that presuppose years of specialist training. This registry occupies the space between the two — mechanism-first, evidence-based, and written to be readable by a motivated non-specialist. The goal is not to replace clinical care but to equip people to engage more fully with it.

The registry is written for three overlapping audiences. Patients who want to understand the physiology underlying their diagnosis — not just what is happening, but why, and what the research says about it. Caregivers who need rigorous answers when advocating for someone they love and find surface-level explanations insufficient. Clinicians who want a curated, annotated reading list covering conditions that fall outside most standard training curricula and that are increasingly common in practice.

This site is not a diagnostic tool and nothing here constitutes medical advice. It is not affiliated with any clinic, physician, academic institution, or advocacy organization. Every article on this registry summarizes published peer-reviewed research. Citations and links to primary sources are always provided. If you read something here that informs a clinical decision, that decision belongs to you and your physician — not to this website.

About the Conditions Covered

The registry focuses on a cluster of conditions linked by overlapping autonomic, connective tissue, and post-infectious mechanisms: postural orthostatic tachycardia syndrome (POTS) and broader dysautonomia; myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS); Ehlers-Danlos syndrome and generalized hypermobility spectrum disorders; orthostatic hypotension; and emerging research on mind-body and central sensitization science as it applies to these conditions.

A Note on Sources

All content on this site summarizes published, peer-reviewed research. Every article links directly to the original source material — journal publications, preprints, or institutional reports — so readers can verify claims and read further. Nothing here represents original medical research or clinical opinion. Where evidence is preliminary or contested, that is noted explicitly.

Contact

For research suggestions, corrections, or general questions, visit the contact page.