This is an automated archive made by the Lemmit Bot.
The original was posted on /r/cfs by /u/CornelliSausage on 2025-01-18 13:37:22+00:00.
Did anyone else attend the Remission Biome Update webinar yesterday? I was only able to stay for about an hour before starting to feel a bit spacey so I left to prevent overdoing it, but thought I’d share some of what they mentioned.
These are super preliminary findings and not published, but they are interesting nonetheless. If you’re not familiar with the project, Remission Biome was founded by two people who both experienced temporary remission events (TREs) from MECFS while taking antibiotics, and subsequent improved baselines. (Bedbound to years of mild.) They are trying to recreate TREs on a larger scale and learn about why they happen. They have developed a protocol which not only involves taking antibiotics but preparing your system for them by stabilising people as much as possible before they start.
- Their new protocol is going to be released at one of their meetings next month. A lot of people in the project have been able to increase their baselines just by following the protocol without antibiotics so it will be interesting to see what is in it.
- Infections, hormones, and mechanical issues (like CCI) affect the effectiveness of the protocol.
- In one subject there was a clear reduction in REM sleep during their TRE and for a period thereafter.
- In other subject (or maybe the same one - they didn’t specify), the lactobacillus population in their gut biome exploded into dominance right before their TRE.
- So far 60% of those who did the full protocol have had a TRE. Some people had a baseline increase even without experiencing a TRE. Not everyone who had a TRE had a baseline increase.
- Some genetic alterations have been found which are more common in the study population than the general population, including genes that affect glycogen storage, carnitine transport, and glutamate receptors. These differences not only may increase susceptibility to the disease, but may account for the huge differences we see in how MECFS patients respond to various drugs and supplements.
- These genetic alterations appear at a higher rate in those who have been very severe for a very long time.
I’m sure there was more but I had to stop there!