Patient initiative: Screening half a million stool donor applicants to find FMT (Fecal Microbiota Transplant) super-donors

[MaximilianKohler]

My history:

• web.archive.org/web/20220801072636/https://old.reddit.com/r/HumanMicrobiome/comments/8sv31e/my_detailed_experiences_lessons_from_8_different/
• www.youtube.com/watch?v=6wi52tLjCps

I've been following the microbiome research, doing FMTs, and trying to find a highly effective donor for the past decade. I created HumanMicrobiome.info (see CFS section) to try to help other people get up to date on what I feel is the obvious crux of the issue. I tried to go through official channels for years to push for FMT clinical trials with high quality donors, but when that failed I took things into my own hands and started up HumanMicrobes.org.

I struggled for a while, then a video went viral on social media resulting in tens of thousands of stool donor applicants. After ~23,000 we tried the #1 ranked donor. Results were mediocre but many people improved. A while later we activated another donor, but still results haven't been spectacular.

Last year I raised prices & donor-payouts significantly. That seemed to be the necessary catalyst, and resulted in lots of viral videos and 500k+ stool donor applicants.

I've been surprised at how rare my ideal stool donor criteria are. I still haven't found an ideal donor, but I'm still working through all the applicants.

I would welcome collaboration from other research groups to assess our donors to try to figure out how to identify highly effective donors (IE: super-donors). Otherwise, it's up to us patients to continue to experiment and try to figure things out on our own.

Also, I'm spending a ton of time screening "average" people. My efforts to recruit the types of people I think are most likely to qualify - top athletes - haven't been very successful. So I would welcome assistance in that regard.

 

[Rufous McKinney]

but when that failed I took things into my own hands and started up HumanMicrobes.org

I' ve been wondering how things were going with you, thank you for posting an update here.

After ~23,000 we tried the #1 ranked donor. Results were mediocre but many people improved.

my daughter heard about donors and considered it. We still think both my granddaughters might be prime candidates for "donating to an experiment for me"......

My daughter said she doesn't qualify because they only want people under thirty who are major athletes.

Personally, I would not want an FMT from an athlete. I"d worry about too much inflammation....

 

[MaximilianKohler]

If you're interested in using one of your daughters/granddaughters for DIY on yourself, you could put them through this questionnaire: https://humanmicrobiome.info/FMTquestionnaire. Just make sure you know what you're doing before trying FMT.

Certainly there are lots of athletes who aren't good candidates and non-athletes who are. My current #1 ranked donor is not an athlete. Neither was our first 1-in-23,000 donor. Athleticism is only one of many factors that I consider. And I discuss that more on our blog.

Also, there are a ton of people who contact me who are super confident that they're the 0.01% donor we're looking for and the majority of them aren't close. Most people seem to have a very poor understanding of the gut microbiome and stool-donor quality; including many degree-holders who work in the field.

 

[cheeseater]

Eventually, some day, "they" will likely come up with a pill or suppository loaded with safe and healthy bacteria so that people can pop one in after they finish a round of antibiotics, for instance. Of course, lots of other reasons why this is going to turn into an important part of human healthcare, some day.

 

[MaximilianKohler]

Eventually, some day, "they" will likely come up with a pill or suppository loaded with safe and healthy bacteria so that people can pop one in after they finish a round of antibiotics, for instance. Of course, lots of other reasons why this is going to turn into an important part of human healthcare, some day.

They can't because they're currently looking for gold in a coal mine. Their donors apply to HMorg because we pay so much more but their donors don't qualify or rank high.

Once I find a super-donor I'll help them, but there are severe knowledge limitations: https://humanmicrobiome.info/testing. It will take decades to replace whole stool with synthetic versions.

 

[cheeseater]

Is finding super donors realistic? What would make them super?

"Eventually" might be less than decades if "they" decide to do a concerted effort to get it done. Big Science and all. They could come up with a biologic version in years if they really wanted to. All depends how much resources they want to put into it.

 

[MaximilianKohler]

>What would make them super?

That's covered on our blog: https://www.humanmicrobes.org/blog/the-evidence-and-rationale-supporting-our-donor-criteria

>Is finding super donors realistic?

Yes it is. Here is one such study where they seemed lucky enough to find one without much effort: https://gut.bmj.com/content/69/5/859

 

[Wishful]

This news item caught my eye: https://www.sciencedaily.com/releases/2023/05/230510120529.htm

"Both research teams agree that we need to know more about how various under-explored factors -- -- such as the patient's diet and genetic background, how closely the donor's microbial composition matches the patient's existing microbiome, and the presence of non-bacterial gut inhabitants like fungi and viruses -- impact FMT success."

"While some studies support the existence of shared characteristics that make up 'super-donors', others found that the optimal donor is more patient-specific, thus calling for personalized selection strategies with the help of microbiome sequencing tools, rather than a 'one stool fits all' approach," write Porcari and colleagues.

That fits what I think: that even the most superior--by some limited criteria--sample is not going to be the best treatment for everyone, since there are too many factors involved. Is the same "superior" sample supposed to work for both carnivores and vegetarians? Would the specific microbes in the sample even survive more than a few generations in such different gut environments?

 

[Judee]

others found that the optimal donor is more patient-specific

That seems to fit Ken Lassessen's view too I think. He says it's like organ donation where you want to find the closest match even including gender and blood type if possible. At least someone with a family connection if you can.

Edit: Not meaning to discourage someone from trying though if they don't have those options.

 

[MaximilianKohler]

This news item caught my eye: https://www.sciencedaily.com/releases/2023/05/230510120529.htm

"Both research teams agree that we need to know more about how various under-explored factors -- -- such as the patient's diet and genetic background, how closely the donor's microbial composition matches the patient's existing microbiome, and the presence of non-bacterial gut inhabitants like fungi and viruses -- impact FMT success."

"While some studies support the existence of shared characteristics that make up 'super-donors', others found that the optimal donor is more patient-specific, thus calling for personalized selection strategies with the help of microbiome sequencing tools, rather than a 'one stool fits all' approach," write Porcari and colleagues.

That fits what I think: that even the most superior--by some limited criteria--sample is not going to be the best treatment for everyone, since there are too many factors involved. Is the same "superior" sample supposed to work for both carnivores and vegetarians? Would the specific microbes in the sample even survive more than a few generations in such different gut environments?

I did cover that in this blog post:

Half a million stool-donor applicants.​

That seems to fit Ken Lassessen's view too I think. He says it's like organ donation where you want to find the closest match even including gender and blood type if possible. At least someone with a family connection if you can.

Edit: Not meaning to discourage someone from trying though if they don't have those options.

Ken's not a quality source of information. He regularly spreads misinformation even after being pointed towards accurate information.

https://www.reddit.com/r/HumanMicrobiome/comments/xxed68/_/irbpqjo

 

[Judee]

Just curious have you had success putting your ME/CFS into remission with FMT?

 

[MaximilianKohler]

Just curious have you had success putting your ME/CFS into remission with FMT?

I've done FMTs from 12 different donors now. Full report:

• My detailed experiences & lessons from 8 different FMT donors

I found some highly effective donors but I wasn't able to keep them. So I'm still looking for a dependable one.

 

[Judee]

I found some highly effective donors but I wasn't able to keep them. So I'm still looking for a dependable one.

Thank you for this short answer.

Unfortunately, there are just too many words all over the page on that site you linked. My brain can't organize what I'm seeing enough to process any of it. Instead I start to get visually lost in the word "woods" and my brain shuts down.

Sorry. It's part of this disease for me.

So with the "highly effective donors" what improvements in your ME did you notice? How soon afterward? And how long did the effects last?

 

[MaximilianKohler]

Overall improvement within 1-2 days, which lasted about a week or so. Both of them gave me temporary illness/worsening symptoms for ~8-48 hours. The best ones seem to do that.

 

[Judee]

Did you ever see this thread @MaximilianKohler? https://forums.phoenixrising.me/threads/how-i-put-me-cfs-into-remission-even-better.61777/

 

[MaximilianKohler]

Yeah, I think I talked to that person briefly in the past. Anything specific about it that makes you reference it?

 

[Judee]

Just in case it would give any additional helpful ideas.

 

[MaximilianKohler]

The FDA sent me a warning letter:
https://forum.humanmicrobiome.info/threads/is-human-microbes-getting-shut-down.261/

 

[MaximilianKohler]

I just posted two new blogs in response to the FDA warning letter:

• The FDA and FMT regulation.
• High-quality stool donors are more rare than one in a million? AI, funding, and potential.

Any ideas about what could be done? Perhaps a letter-writing/petition campaign to the FDA could be organized?

 

[MaximilianKohler]

This Expanded Access program https://www.fda.gov/news-events/expanded-access/expanded-access-information-patients that allows patients to try non-licensed drugs seems like it should make it possible for this project to continue.

@Hip posted about it here.