How we collect, index, and protect chronic illness data — and why we built it the way we did.
People with chronic illness spend enormous amounts of time researching their conditions — often at 2am, often on a phone, often in a brain-fog state where reading a full PubMed abstract is the cognitive equivalent of running a marathon. They also spend time in Reddit threads, YouTube comments, and Facebook groups because that's where the real-world experience lives — the dosing that actually works, the symptom patterns no one writes papers about, the vindication of knowing someone else has the same weird thing.
Most health databases are built for clinicians. This one is built for patients. It combines the rigour of peer-reviewed research with the honesty of community experience, and makes both searchable in one place.
How: NCBI E-utilities API (free, open-access). Abstracts are always publicly available regardless of journal paywall status.
What we store: Title, abstract, authors (last names only), journal, publication date, DOI. Full article text is never stored.
How: Official Reddit API with OAuth 2.0 application-only auth. Subreddits: r/ChronicPain, r/fibromyalgia, r/cfs, r/lupus, r/eds, r/POTS, r/ChronicIllness, r/spoonies, r/dysautonomia, and more.
What we store: Post title, subreddit name, and permalink only. Post body text, usernames, and author information are never extracted or stored.
How: YouTube Data API v3. Searched with terms like "[condition] patient experience" and "living with [condition]".
What we store: Video title, channel name, video ID, and thumbnail URL. Descriptions (which may contain personal health disclosures) are never stored.
Health data is special category data under GDPR Article 9. We take this seriously. Our core design principle is: if we don't need it, we don't store it.
It's a searchable index of chronic illness content from three sources: peer-reviewed research from PubMed (open-access abstracts), community discussions from Reddit (titles and links only — no post body text), and patient experience videos from YouTube (embedded, click-to-load). All content links back to its original source.
Currently 77 conditions spanning core spoonie diagnoses (fibromyalgia, ME/CFS, POTS, EDS, hEDS, MCAS, long COVID), autoimmune conditions, hormonal and reproductive conditions, neurological, gastrointestinal, structural/vascular, sleep disorders, and rare conditions. The database is refreshed on a rolling weekly cycle via automated sync.
Three official sources only. PubMed via NCBI E-utilities (open-access, abstracts always freely available). Reddit via the official Reddit API with OAuth 2.0 — we store only title, subreddit, and permalink, never post body text or usernames. YouTube via the official YouTube Data API v3 — we store only video title, channel name, and video ID for embedding.
Reddit post body text may contain personal health disclosures — storing it would create GDPR Article 9 (special category health data) obligations that are disproportionate for a search index. We store only the post title and a link back to Reddit, so you always read it in context on Reddit's own platform.
Embedding a YouTube iframe automatically loads Google's tracking cookies, which under GDPR requires explicit consent. Our click-to-load pattern means no YouTube connection is made until you choose to watch. The small "Clicking loads YouTube and its cookies" notice is intentional — it's not legalese, it's a genuine heads-up.
Search queries are logged for analytics (so we can see which conditions people search most), but logs are pseudonymised — your IP address is hashed with a salt before storage, and there is no link between search logs and user accounts. We cannot identify who searched for what.
A sync runs weekly, on Mondays at 06:00 UTC. Each run refreshes a rotating batch of 8 conditions rather than all of them at once, so the full list comes round about every 10 weeks. For each condition in that batch it fetches up to 40 PubMed articles, recent Reddit posts from condition-specific subreddits, and relevant YouTube videos. Each run upserts — it won't create duplicates.
Yes — use the contact page or open an issue on GitHub. We're especially keen to add conditions that are underrepresented in mainstream health databases.
No individual data is ever sold, and there is nothing individual to sell: we hold no accounts, no health profiles, and no reversible link between a search and a person. The search side stays free, ad-free, and never ranked by anyone who paid. Where money comes in, it is from aggregate research reports — for example, comparing how often a symptom appears in published research versus how often patients raise it, across thousands of indexed items at once. Those reports contain only counts and percentages, and a search phrase is never included unless several separate sessions searched it independently. Whenever we sell a report, a plain-language summary of what it found is published here for free.
No. This is a research and community experience index — it surfaces what researchers and patients are saying, not clinical guidance. Nothing here should be used to make healthcare decisions without consulting a qualified clinician. We are a chronic illness learning platform, not a medical provider.
"Spoons" is shorthand for Spoon Theory — Christine Miserandino's framework for explaining limited energy to people without chronic illness. spoons.world is the home of this Patient Experience Database, and is part of Spooniversity, a learning platform built for people with chronic illness by people with chronic illness.