#RemissionBiome ME CFS self-experiment (Phase 2)
Hi,
We're Tamara + Tess. We’re scientists + patients (yes, you can be both!), who improved from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) after taking antibiotics.
Description of Phase 1 of our experiment is below, but as of 1/18/23 donations will go towards Phase 2. We ended up getting a grant from the Balvi foundation to fully fund (along with the donations in here) Phase 1! https://twitter.com/remissionbiome/status/1615424167750340632?t=eT2o5NS_i2jm23T4_kFc9g&s=19
We are already planning Phase 2. We have always had the vision that #RemissionBiome is not just about us. It's not just about us doing a self-experiment to personally get better. What we learn from Phase 1 will inform future studies. We have a dream that what we learn will help many people with ME/CFS, long COVID, and related conditions.
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Our aim with this self-experiment, which we refer to as #RemissionBiome, is to look at how modifying the microbiome can shift the baseline in #MECFS. Our website https://Remissionbiome.org has details of our stories, protocol, and the science. You can also watch this info session that we did on 1/12/23 to get an overview.
The idea for #remissionbiome came from both of us experiencing temporary remission, after taking a mix of antibiotics (& in Tamara’s case, probiotics). While remission was fleeting, afterwards, our baselines improved.
Our aim is to recreate this event + understand it.
We will take AmoxClav, probiotics, prebiotics, postbiotics, & exogenous ketones during our experiment.
Before, during (if a remission event happens), & after we will test with BiomeSight stool tests, ProdromeScience blood tests, Edge Lactate tests, and SiPhox Health blood tests.
We would like to have additional tests but need help because this project isn't officially funded. Here are some of the additional tests we're hoping to get:
Ulta Lab Tests TNF alpha, CMP, CBC
SiPhox Health
Genova Organix
Cyrex intestinal permeability
Precision Analytical dutch plus
High-resolution immune profiling sample shipping
While we both only experienced short-term remissions (2 days for Tess & 4 hours for Tamara), we experienced an increase in baseline function that was very significant. Tamara went from Severe to Moderate (bedridden to walking) & Tess went from Severe/Moderate to Moderate/Mild.
While temporary remission is the immediate goal, it's not the ultimate goal: which is a lasting shift in baseline function, one that might even be kicked up a notch a few times with repeated temporary remissions.
Please help us purchase more tests so that we can tease out what happens if we have a remission event (or even if we don't have a dramatic event our baselines might increase!)
