Serendipity Meets Preparation
The Remission Biome protocol was born out of a serendipitous discovery. Many patients reported experiencing temporary remission of symptoms after taking antibiotics prescribed for a variety of infections. The remission events varied from minutes to days and, in many cases, led to improvements in baseline symptoms for various durations. Remission events are characterized by a complete cessation of all symptoms, as if the body was completely healed.
Patient researchers decided this was a challenge worth investigating further to discover how to replicate and improve upon these remission events. We are accustomed to having to be our own researchers, given that we have illnesses that are underfunded, understudied, lack approved treatments, and have few trained clinicians who understand our diseases.
Was this an opportunity to make a quantum leap for all the patients in our global Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID community?
From #Hashtag to Funded Patient-Led Research Project
A few citizen scientists decided to try to recreate the remission events by self-experimenting, and the #remissionbiome was born. They decided to ask for funds to help support the project, and community members answered the call.
Founder Tess applied for a grant from Balvi, and they said yes! Then they started asking companies if they would give deep discounts or offer supplies or testing for free. Many responded with generous offers.
The community was following our every step and wanted to follow in our footsteps. What started as a small group of 3 grew to 13, and now to 50 more, with an entire organization to support this project and over 500 more people waiting to join in future cohorts.
something different
What Prepared Us for This Moment?
Our community is full of patient researchers who have had different areas of interest over time on their long journey to understanding our own complex chronic illnesses. In the near future, we'll share examples of areas we were gaining expertise in that prepared us for this moment. In many cases, these were only paths patients would follow. Watch this space for more soon!
A Different Kind of Organization
Founder Tess Falor had a strong vision for a different way of organically starting and growing a patient-led organization, one that is in service of patients. She encouraged a non-hierarchical structure intermixed with foundational organization to be quick and nimble as we build.