We (Tamara and Tess) both have PhDs and are also patients who had dramatic, sudden remission from severe ME/CFS after taking antibiotics. We met on Twitter in the fall of 2022. After finding out that we shared this extreme remission experience, we started planning the RemissionBiome self-experiment. The goal of the experiment is to recreate these remission events and measure as many biomarkers as possible before, during, and after an event, if one happens. We will then try to tease out what might have caused the experience. Below are the descriptions of our backstories and what these remission events felt like.

Tamara’s Remission Story

My very first experience with ME/CFS was back in 2001 right at the very end of my PhD. I got bit by an Aedes aegypti mosquito doing fieldwork in Jamaica and got dengue fever. I had a short-term, self-limiting ME/CFS bout that lasted for about two years after that, but then I got over it.

I became a tenured professor of biology at Dalhousie University. I studied diversity-stability relationships and ecosystems, mostly aquatic ecosystems. Then in the last few years before I got sick again, I started studying the human microbiome and the effects of probiotics.

I went on sabbatical in 2012 and I believe that I had an additional hit of dengue that year. This second hit was what really did me in. I got sick and became bedridden pretty quickly. Within a couple of years I went from having moderate disease to severe disease. I went through a period of about a year and a half where I was in a dark room 24/7, with almost no interaction, sliding very, very quickly into tube feeding.

Then I got this really horrible mouth abscess, so I called my doctor. My normal doctor wasn’t there, so the substitute doctor prescribed Amoxiclav, which my normal doctor wouldn’t have done because we have a note on my file not to give me penicillins. I’ve never had a reaction, but we had a family history of it, so it was there as a safety precaution. I took the Amoxiclav for three days and on the fourth day I started taking some probiotics.

I also took a drink, which was a mixture of MCT oil, ghee, branched chain amino acids, and turmeric. I wasn’t really eating much because I had the mouth ulcer. I think I was probably in ketosis at the time. Within about an hour of drinking the mix, I entered this state where over a period of about 20 minutes I went from being in a dark room, headphones on, not moving in bed, to out on my patio, hat came off, headphones came off. I grabbed the dog. I went running outside and did angels on the grass and it was just miraculous. I thought it potentially was a spiritual awakening, because I’d started meditating soon before that.

It was just miraculous. Colors were brighter, smells were incredible, and my gratitude was overwhelming. I knew something was happening that was super abnormal, so I grabbed my iPhone and recorded myself while the event was happening. It lasted for about four hours and then my sister came home. I said to her, “this is what’s happening and I think the veil is starting to come down again.” Within about 20 minutes of feeling like the remission event was resolving. I went back into the dark room. I put my hat and my earphones on again and got into bed. It was extremely vivid, overwhelming, saddening, and in some ways scary because I knew something really, really incredible had happened biochemically.

Tess’s Remission Story

I was doing really well before I got sick. I was an aerospace engineering student at the University of Michigan and, in 2005, I went to work as a summer intern at NASA JPL in Pasadena, California. I started having unusual symptoms, such as hives and swelling every day and extreme exhaustion. I went to an emergency room and was told that I had Valley Fever, a soil-based fungus that you can inhale, which is common in that area of California.

Over the next four years, I kept declining. By 2009, I was spending most of my day in bed and when I wasn’t in bed, I was lying on the couch. Then I had what we refer to as a “RemissionBiome event”.

I was given antibiotics for h pylori – a Prevpac, which has Amoxicillin, Clarithromycin, and a proton pump inhibitor (PPI). I started a gluten-free diet the same day that I started the Prevpac. Two days later, I woke up and felt like a completely different person. I almost felt like I wasn’t even in my body anymore because all of my pain, fatigue, burning muscles, and brain fog were completely gone. I’d gotten so used to feeling like that after four years of being sick. I didn’t even realize how sick I had gotten until it went away.

The remission event was so sudden. I went to sleep on the second night of taking antibiotics feeling like my really ill self and then (to my consciousness, since I was sleeping when the event happened,) it was like a switch flipped. I felt even better than I remembered feeling when I was a kid. I just had boundless energy. I jumped out of bed. I don’t think that what I felt those days is how healthy people feel all the time. It was euphoric. Colors seemed brighter and fragrances more intense. I just felt extreme gratitude and felt very present.

On the second night of feeling this miraculous change, I accidentally ate gluten. I woke up the next day and was back in my old body. Once again, I could barely get out of bed. I felt extreme fatigue and like my body was made out of lead. 

I assumed that my remission had been caused by going gluten-free and I still eat a gluten-free diet 14 years later, because of that. However, after meeting Tamara and finding other people who had similar remission experiences, I now think that the antibiotics were key. It’s possible that the gluten-free diet also contributed by lowering inflammation and changing my microbiome, but I haven’t found anyone else who had a RemissionBiome experience just from going gluten-free.

Since my remission event happened in 2009, I haven’t felt like I did those two miraculous days again, but my baseline improved significantly after my remission experience.

How we met on Twitter

Tess’s description: I love science, so after I found out about ME/CFS, I dove into the literature. I came across ideas like Robert Naviaux’s cell danger response hypothesis and Rob Phair’s IDO metabolic trap. During the 11 years after my remission, I really got into evolutionary medicine and thought a lot about the evolutionary perspective. While reading about ME/CFS, I came across sickness behavior, which is an evolutionarily adaptive response after acute infection to get the body to rest. I was thinking about all these ideas and with my background in systems engineering, I was trying to put the pieces together and think about it as a systems problem. 

I created a Twitter thread about evolutionary medicine and saw that someone retweeted it, who ended up being Tamara, “Dr T”. She said that she had a similar model in mind, so we started talking on that thread and I was so excited. I was like, “this person understands where I’m going! She knows more about the science than I do!” I was so excited to talk to her. Then she mentioned she had this remission event and I was just like, “wait a minute, I had a weird remission event too.” I still didn’t quite understand how similar our events were until she mentioned the colors were brighter. She started describing what had happened. In the 13 years since my remission event happened, nobody else has ever REALLY understood what I went through. She did. I was 100% sure she understood what this was like. We became really good friends almost instantly and started planning the RemissionBiome self-experiment 13 days after meeting.  

Recordings of us telling our story

We described our remission events, how we met, and how the RemissionBiome project started during the info session that we recorded on January 12, 2023 and during the podcast that we recorded with Simon Spichak a few weeks later. The full transcripts from the info session and from the podcast are posted on our blog.