RemissionBiome is a project designed to examine the role of antibiotics and the gut microbiome in causing temporary remission in ME/CFS. We (Tess and Tamara) each experienced a sudden, dramatic (yet short lived) remission after taking antibiotics and are planning to conduct experiments on ourselves to try to recreate those events. We will take AmoxClav antibiotics, along with probiotics, prebiotics, and postbiotics, and measure numerous biomarkers, such as cytokines and neurotransmitters. Our main goal for this first study is to prove that we can recreate one of these events. We also hope that measuring the biomarkers throughout the experiment will allow us to narrow down hypotheses for future studies. To hear our remission stories and some details about our plans for the experiment, check out our info session on YouTube; a transcript will be available at a later date.  

The project has grown exponentially since its inception in September 2022. Two weeks after meeting on Twitter and discovering that we had very similar antibiotic-induced remissions, Tamara suggested that we should try to recreate the experience. We agreed to take antibiotics at the same time and use BiomeSight stool tests to measure microbiome changes. We decided to start our experiment in December, because Tess was scheduled to participate in a study at Stanford at the end of November, and didn’t want to alter her baseline before the study.

It was fortuitous that we waited, because by mid-November the plans for our self-experiment were already growing. Tamara had contacted companies to ask for project sponsorships and on November 17 we got the exciting news that BiomeSight and Prodrome were going to provide us with free tests! A few days later, we got a third sponsor, followed by many more. In addition, we started contacting researchers to discuss hypotheses that could explain spontaneous remissions from ME/CFS and got a lot of interest in our project. Rob Phair was the first scientist we talked to. The three of us had an energizing Zoom meeting. Tess then met Rob in person while she was visiting Stanford to discuss our experiment in more detail, and to talk about Rob’s hypotheses, including the itaconate shunt and IDO metabolic trap. 

After Tess got home from Stanford, we kept deciding to postpone the start date, because almost every company we contacted agreed to sponsor us. Sponsorship offers slowed by the end of December and we hadn’t heard back from any lactate testing device companies. We thought that lactate could be a key measurement, so we asked our followers on Twitter if anyone could help us. Within an hour a private donor offered to buy the devices for us. (Thanks Kevin and Annie!) Many people suggested that we should also start a GoFundMe, so we created one the same day and immediately started getting donations. (Thanks to all donors!)

With the confidence gained from all of the support, Tess sent a grant proposal to the Balvi, “a scientific investment and direct gifting fund for deploying quickly to high-value COVID projects that traditional institutional or commercial funding sources tend to overlook for being too early or ‘outside the box’, or because there’s no financial incentive.” Balvi was created by the founder of Ethereum, Vitalik Buterin, and has funded fantastic research into Long COVID and related conditions. 

Funny side note: Tamara was engaged with sponsors, working on the protocol for our experiment, and keeping up the momentum in many additional areas, so Tess submitted the proposal on a whim without telling her. She figured it was a long-shot, so she didn’t want Tamara to have to spend time on something that was unlikely to pay off. As Tamara later pointed out on Twitter, “We ACT – rather than just talk. It’s what drives progress. ‘Meetings’ are actually rare. I would say we tell each other the specifics of what we are up to about 15% of the time. Not very often. We mostly just keep the balls rolling and ya, ACT.”

Two weeks after submitting the proposal, we received an email stating that it was accepted. This was HUGE!! The Balvi grant funding allowed us to purchase the remainder of the tests that we thought could give us critical data to understand a remission event, if one happens. The last hurdle was that the grant was given in cryptocurrency, which necessitated a crash-course in crypto. At that point, we had all of the funding in hand and were able to finalize our plans for the experiment.

Fast forward to today. We have ordered all of the tests and are days away from receiving the rest of the supplies in the mail. We are still receiving generous donations through our GoFundMe and since we have full funding for our first experiment, all of these new donations will be used to fund phase 2. The momentum is already building behind the scenes for this second phase study when we will bring in more participants! We will need much more funding for the second phase so that we can make RemissionBiome kits accessible to everyone. We don’t want finances to prevent anyone from participating. Donations that we receive now will help us hit the ground running for phase 2, keeping up the momentum that we have gained over the past few months.

Stay tuned to find out the start dates and schedule for phase 1 of our experiment. Follow @RemissionBiome on Twitter to get real-time updates throughout our journey.