Advocacy Effort Who to contact to get an FMT clinical trial with high quality donors?

[MaximilianKohler]

Low FMT donor quality is likely what's keeping this from being an available cure.


I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/

There is tremendous support for FMT being close to a panacea with the major caveat being that the donor is in perfect health, with an unperturbed, disease-resistant, curative gut microbiome. It's currently looking like fewer than 0.4% of the population qualifies: https://archive.fo/JmcMV#selection-1525.120-1525.121

I've done DIY FMTs from 9 different donors, published my detailed results and lessons: https://docs.google.com/document/d/1cagQpzRCa7Uy8QZYV6NiywDhPELBlzHxUk1OWPR3kNM/, and shared it with hundreds of researchers.

First I emailed all 180 authors running current FMT clinical trials https://archive.fo/YZ7Xk#selection-1603.11-1607.1 to complain about, and advocate for higher donor quality. Then I emailed dozens more USA-based IBS and CFS researchers who were authors on papers listed in the wiki to see if they'd be able to run an FMT clinical trial with high quality donors. I emailed the major microbiome research centers in California. I emailed CFS and IBS advocacy groups to ask who I should contact. A journal editor advised me to contact American Gasto Assoc authors on IBS guidelines, and US authors on the Rome Foundation IBS guidelines - same for the CFS researchers. I did that as well and still no takers.

From my view, anyone in a position to do something about it has their head up their ass. Among professionals involved in FMT/microbiome there seems to be a large amount of ignorance, apathy, myopic focus on one tiny piece of the puzzle, and resistance to reviewing relevant information and investigating its merit. There might be a few researchers who are the exception, but they don't seem to have the capability to run a clinical trial.

I'm so sick of this. There's likely a cure right now, and it's easy as hell to obtain, given the right people try to obtain it.

I contacted the Norweigian guys doing a CFS FMT study to share info on what makes a high quality donor and urged them to find one. I don't know if they bothered to do so and we won't find out till 2023 - when the study ends. I'm not waiting around.

I'm going to start writing to newspapers now.

 

[Master4thDegree]

I am curious, how did you get that .4% figure. I bet you are right, but I know that OpenBiome says their acceptace rate is closer to 3%. Thank you in advance for any collaboration.

By the way, I did put in remision my ME/CFS using Fecal Transplant. My story is at Our2ndbrain.com if you are interested.

 

[MaximilianKohler]

0.4% is from a Danish study where they accepted 3 out of 700 applicants. See:

https://archive.fo/JmcMV
and
https://archive.fo/XUhyi

I'm reading your DIY FMT report. I'll summarize for myself and others:

* History of antibiotic use/abuse. Antibiotics caused harm and made you dependent on antibiotics. (A very common phenomena that I've experienced as well)

1. Did enema-only FMT from son. Didn't see much improvement.
2. Did oral capsules from daughter. Started seeing improvements by day 3. Did it at least 9 times and saw gradual, long-term improvements.

My main questions would be about the differences in donor quality between the two donors you used. This is a full questionnaire that should give a better idea: https://archive.fo/s3Uwx. But lifetime antimicrobial use, and bristol stool type are some of the main ones.

I'm also curious why you stopped at 9.

 

[Master4thDegree]

My short answer is that I could feel a massive shift in metabolics (amazing body heat), and even hormonal shift along with neurotransmitters. Inflammation had subsided (returns with illness though) and my physical strength was back to normal. I used diet following the FMT to ensure quality of colonization.

I was in a semi-manic euphoric state and based on my research it suggested that colonization would continue for the next 2-3 months. It did and the waves of manic-depressive kept getting shorter and shorter and finally subsided at about 2 months (regret not taking more detailed note).