Blog The evidence and rationale supporting our stool donor criteria (2022, HumanMicrobes.org)

[Michael Harrop]

https://www.humanmicrobes.org/blog/the-evidence-and-rationale-supporting-our-donor-criteria

In this blog post, I’ll address common questions about our stool donor criteria. Namely, why we focus so much on top young athletes.

 

[BummmmbleBee]

About your screening process. Why are you so sure that young athletes are the most important group? What indicators are there that this group should yield the best results? Typically, they eat an unhealthy diet because they need a gargantuan amount of calories that are difficult to get with the best diets… you may see many more actionable biomes from people who eat natural Whole Foods, rather than the junk that many athletes inhale after exhausting their calorie supplies thus forcing their body’s starvation response. People who do moderate exercise, eat well, and like quiet lives away from intense sports outcomes is likely a much better set of environmental factors. I hate to see you bark up the wrong tree, continually retreading the same ground that yields 1 in a million type results…

 

[Michael Harrop]

You posted your comment off-topic elsewhere on the forum, so I'll ask if you read this blog post.

Typically, they eat an unhealthy diet

I question this and want some evidence for this claim. It is not accurate from what I've seen. For example, I saw an interview with Tyson Gay where he commented on how unenjoyable his diet was due to how strict it was. But I do also recall Michael Phelps saying he eats whatever he wants, including pizza, and has an alcohol problem. I've also seen Usain Bolt commenting on eating chicken nuggets at the Olympics, but I don't think that's his regular diet. Certainly there is some variation there, and as noted in the blog, just because someone is a world-class athlete doesn't automatically qualify them.

continually retreading the same ground that yields 1 in a million type results

I don't understand this sentence, and my guess is that it stems from having not read the blog and not understanding our process. The million+ applicants are coming from organic social media videos. They're not targeting anyone in particular, other than "social media users". That is why so few of the applicants come close to qualifying -- because chronic disease and general poor health are epidemic. No one gets disqualified for "not being an athlete". We are not excluding non-athletes in any way. So the fact that we think top young athletes are the ideal target group is largely irrelevant.

 

[Riceandbeans32]

An argument can be made that top athletes should be disqualified because the use of peds extremely common at those levels. Especially in track, football, MMA and boxing. Drug testing is mediocre and athletes get caught all the time. Its very well known. I’ve been involved in sports all my life and I've seen it first hand too. Hell, half of the players on my high school football and track team were on something. Just imagine how common it is in college and professionally. Potential donors would never be willing to report that on the questionnaire.

 

[Michael Harrop]

Do you have any citations to support PEDs being disqualifying for stool donation? I have had athletes report PED usage on the questionnaire, but there are probably some who don't report it. The screening process is designed to account for omissions, and I don't know of any evidence supporting such a stance of disqualifying all top athletes due to this, much less enough evidence to counter all the pro-athlete evidence in the blog.

 

[Riceandbeans32]

I’m am not aware of any, this is actually a good example of something that has not been studied yet because of the nascency of microbiome research but is quite intuitive. If we know that PEDs, particularly steroids, can lead to testicular atrophy, and a significant decrease in natural testosterone production, and that the microbiome is strongly associated with our hormonal profiles then it makes sense that people with past PED use would have compromised gut microbiomes.

 

[DungEater]

Exogenous testosterone use eventually atrophies the testes because endogenous testosterone creation is no longer necessary -- I suppose analogous to how your leg muscles would eventually atrophy if you stopped walking. It may be true that the microbiome has a modulatory effect on endogenous hormonal activity, but that doesn't necessarily mean that exogenous testosterone would harm the microbiome.

 

[Riceandbeans32]

More and more research is revealing that the microbiome is involved in numerous physiological processes. If chronic use of exogenous testosterone or other PEDs leads to testicular atrophy, then when someone discontinues their use of PEDs, it makes sense that they would experience symptoms of low testosterone, correct? If we know that low testosterone is associated with symptoms such as depression, low energy, erectile dysfunction, increased body fat composition, etc., and that a poor microbiome is associated with these symptoms, then wouldn’t it make sense that chronic PED use has a negative effect on the gut microbiota?
there is a known association between the Microbiome and our hormonal profile.

“The mutual interaction between sex steroids and the gut microbiota plays a prominent role in the development of metabolic diseases”

https://bsd.biomedcentral.com/articles/10.1186/s13293-023-00490-2

 

[Michael Harrop]

Discussion here https://forum.humanmicrobiome.info/threads/chlorine-in-treated-drinking-water.320/ on chlorinated water, tribes, and other rural populations.

 

[SFBayFMT5]

I am very grateful that someone is working to provide a resource where prospective FMT recipients can select donors and others can track the success rates of these donors. This is a huge step up from, e.g. OpenBiome where you get what you get and never know whether you received the same as anyone else (in addition to, obviously, serving conditions other than C. diff).

I wanted to share my FMT "theory" in case maybe you have donors who passed the pathogen and chronic health/disease screening but were rejected for other reasons, who might nevertheless be good donors for me (or someone else). None of this is meant to refute or discredit any of your own theories/personal experience. I would have sent privately but I don't see a way, and furthermore it may actually be GOOD if more eyes read this.

First, you mention elite athletes. And there seems to be this general idea in the FMT community that you're looking for like the top 0.1% of something, whatever that is. I personally believe that the best FMT donors won't be "extremely" anything. The GI tract does not run marathons, design spaceships, or write poetry. It provides a stable nourishing foundation for the rest of the body and has to tolerate and utilize a variety of nutrient sources. So I'd suspect that both/all ends of the bell curve should be avoided like the plague, that you want healthy but otherwise close to the population center. Disorders likely tend to already pull things toward the "ends", especially in things like ASD (which I have--although that's not what I hope to treat per se), and re-centering doesn't mean pulling toward some other end.

Yes, high school/college lacrosse players, joggers, etc. are likely good, but athletes at very high levels I suspect are "steep local optima" with a microbiome that is super specialized for one person's genetics. It's possible that having such a "high powered" microbiota could be almost too much for a weak, chronically ill recipient. But more importantly, going for such super high performing people leads to a very narrow donor pool. If you were overflowing with donors this wouldn't be an issue, but even offering $1000+ per stool and screening millions of applicants you are apparently still struggling to get donations.

Also at one point I recall you said something about religion being a factor against a good donor. It was on an old site of yours and I don't know if you're still considering this. Now, I do think that members of isolated cults/sects would likely be bad donors (being socially--and microbially--islands), but otherwise I don't see a reason this should matter. And in fact, church communities may be a great asset. They tend to be socially well connected and are urged to practice moderation in all things, both factors that should promote a diverse microbiome. And, the community and service oriented aspect should facilitate stool donation. If a community had families whose kids have autism or other special needs, which in the 21st century has to be near half of all churches/synagogues/whatever, with the right outreach I can totally see stool donation being something they would spend considerable resources on.

I believe it is this kind of grass roots community aid and mom-osphere work that is going to ultimately fill the gaps in our collective microbiome. Not a bunch of ill social dropouts getting up from their naps in their basements and all trying to find some world class sprinter Mensa member who eats organic paleo, hoping to obtain some silver bullet bacterial strain that we then try and put into everyone. I'm an adult with chronic health issues and my parents are too old for such networking, but the chance is out there.

Now, to my own preferences/suspected good characteristics for a donor:
--Fully developed male donors are least preferred/least expected to work. This is possibly mostly personal "instinct"/comfort level but it has some theoretical basis. Namely, the developing, growing body needs a robust flexible microbiome, but once maturation is complete, traits, lifestyles, etc. tend to get "locked in" and genetic predispositions start to degrade things. You could think of this as the gut version of the synapse "pruning" that occurs at the other end of the gut/brain axis. So, the chance that they could fix an unrelated recipient's issues is low IMO.
--Quite possibly some of the best donors are males say 10-20ish years (or til whenever growth/development stops), since this was me when my own microbiome was last healthy.
--Developing females may be good donors as well. Possibly more good donors but fewer great donors as females are less variable genetically.
--Females I suspect have a range of being good donors that extends on average significantly longer than for males, extending into the peak childbearing period. This is because evolution has "assigned" mothers the task of "seeding" a microbiome in offspring who share only 1/2 of the mother's DNA. So, there should be a mechanism that "keeps diversity around" even when not strictly necessary to the host.

Looking at your current donor list, it looks like IA_SMJ_2010, SD_ES_2015, and possibly OR_JO_1993 would fit these criteria (from my understanding, they are 13-14M, 8-9F, and 30-31F, respectively). But I'm wondering if you get lots of applicants like this who are free of pathogens and disease but rejected for other non-safety reasons that other recipients might not care about?

 

[Michael Harrop]

The GI tract does not run marathons, design spaceships, or write poetry. It provides a stable nourishing foundation for the rest of the body and has to tolerate and utilize a variety of nutrient sources. So I'd suspect that both/all ends of the bell curve should be avoided like the plague

Someone who used HM's donors also did FMT from the Hadza. He got short-term benefits but detriments in the long term due to pathogens he picked up from them.

But he described some of their traits as "super-human". The Hadza are closer to what an "average human" should be. The "average human" in modern society is severely degraded. Many people are unimpressed with athletes and me targeting athletes because what they see and think of are just random people exercising a lot. Those are not the people I'm thinking of when I'm talking about targeting top athletes (I give examples in the blogs).

The Hadza don't train to win competitions; they naturally have abilities similar to or better than top athletes.

You have to understand that the bar has been so severely lowered for virtually every group of people in modern society. This is why only the top 0.001% are viable. https://forum.humanmicrobiome.info/threads/chronic-disease-and-general-poor-health-have-been-drastically-increasi.44/

athletes at very high levels I suspect are "steep local optima" with a microbiome that is super specialized for one person's genetics. It's possible that having such a "high powered" microbiota could be almost too much for a weak, chronically ill recipient.

I can't think of any evidence supporting this.

more importantly, going for such super high performing people leads to a very narrow donor pool. If you were overflowing with donors this wouldn't be an issue, but even offering $1000+ per stool and screening millions of applicants you are apparently still struggling to get donations

I'm not struggling to get donations. I'm struggling to find people who meet the ideal criteria. I have thousands of "good" donors available. I have a lack of "super good" donors.

Also at one point I recall you said something about religion being a factor against a good donor. Now, I do think that members of isolated cults/sects would likely be bad donors (being socially--and microbially--islands), but otherwise I don't see a reason this should matter.

It was in my experience report. Here's the specific link with a list of citations.

I went to a Seventh-day Adventist church (a religious group with a focus on health) in the past to try to find a donor. I didn't find one, but I am open to targeting such groups. I personally have no ability to do so.

hoping to obtain some silver bullet bacterial strain that we then try and put into everyone.

This is an incorrect understanding of the gut microbiome and what I'm looking for -- an entire ecosystem, not one or a handful of strains. I have discussed the complexity and vastness of the gut microbiome in various places, including the latest blog. I'm trying to identify an eubiotic, unperturbed, disease-resistant, curative microbiome. In your previous paragraph you also put too much weight on less-important factors. I'd recommend starting here, along with the linked blog.

Now, to my own preferences/suspected good characteristics for a donor:

I don't know what you mean by "fully developed" given that you then mention "10-20 years old". But I have mentioned a 2-30 age range in the wiki and elsewhere.

Overall, I think your criteria are highly speculative and unsupported. I provide lots of evidence for my criteria in the blog and wiki, and my experience report.

I'm wondering if you get lots of applicants like this who are free of pathogens and disease but rejected for other non-safety reasons that other recipients might not care about?

I reject/rank applicants based on safety and efficacy. Stool type seems to be one of the most important factors for both safety and efficacy. Have you read through my reports for each of those donors you listed?

 

[SFBayFMT5]

Someone who used HM's donors also did FMT from the Hadza. He got short-term benefits but detriments in the long term due to pathogens he picked up from them.

But he described some of their traits as "super-human". The Hadza are closer to what an "average human" should be. The "average human" in modern society is severely degraded.

I see this as just being adapted to different environments and lifestyles. Most of us don't need to hunt and build tools using our muscles as the sole energy source, or live in huts with dirt floors. I'm sure the average Hadza would see some things that the average Westerner does that would seem "super-human" to him/her.

It's like how Africans have dark skin in order to be able to be in the hot sun without getting a lot of UV damage in their skin cells, whereas Nordic people have light skin to enable vitamin D production in weak sunlight. Is one of these "degraded" relative to the other? No, they're just different adaptations. The fact that the Hadza have some beneficial microbes we don't yet also have pathogens we don't fits this picture.

I'm not struggling to get donations. I'm struggling to find people who meet the ideal criteria. I have thousands of "good" donors available. I have a lack of "super good" donors.

My point is, YOUR ideal criteria might not be the same as anyone else's.

There are certain things I assume every FMT recipient wants--safety things. Like we don't want someone with hepatitis B/C, HIV, giardia, syphilis, etc. I'd prefer they also be free of H. pylori, which as I recall you don't test for, although colonization rates in the West for that are supposedly low. We also don't want someone with chronic physical (e.g. diabetes, cancer, lupus), or neurological/psychiatric (MS, bipolar, schizophrenia, etc.) problems. But beyond these criteria, we not only don't know for sure what is "ideal", it may well be that the "ideal" is actually different for different recipients.

I'm sure you have as much reason to believe in, and are as entitled to, your own criteria as I am to mine. I'm not trying to convince you to change what you put in your own body.

Now, if I had the time and resources to start from scratch, I could recruit hundreds of people, test them for pathogens and screen them for chronic health problems, and then narrow them down to which I believe will work best for me given my own knowledge/beliefs/etc. But before I would even think of doing this, I would want to know if anyone else already knows/has found people who already are willing to donate and fulfill most of the criteria.

Given that you supposedly have "thousands" of "good" donors (who I'm assuming fulfill the basic safety criteria I mentioned above), this would seem a logical place to start for finding people who might be ideal for myself, besides the best ones among those you have tried yourself. I even recall you saying once somewhere on a forum that there was a donor who you didn't try yourself because you had something against him/her, but mentioned that "other people had been successful with that donor".

So my point in making this post was, I'm wondering how much of a pool you have who might fit MY criteria of "good" (both what I'm speculating now, AND what I will learn if/as I try donors and get feedback that refines my understanding of how I react to things). And by extension, how many other recipients could maybe find great donors among people who fulfilled a significant number of your criteria but were not "ideal".

I don't know what you mean by "fully developed" given that you then mention "10-20 years old". But I have mentioned a 2-30 age range in the wiki and elsewhere.

I mean post-adolescent, i.e. fully through puberty and no longer growing (as when I suspect quality drops in males). Or conversely, that older child/adolescent males might be good donors. I didn't mean the ages I quoted to be some kind of hard cut-off.

Overall, I think your criteria are highly speculative and unsupported. I provide lots of evidence for my criteria in the blog and wiki, and my experience report.


I reject/rank applicants based on safety and efficacy. Stool type seems to be one of the most important factors for both safety and efficacy. Have you read through my reports for each of those donors you listed?

Yes, I have read through the entire spreadsheet for all the current donors, including both your own experiences as well as other recipients'. And years ago I also read a much longer, essay form report from you detailing experiences with a bunch of the earlier donors, with day by day or even hour by hour descriptions of what you felt after taking the FMTs.

It's clear that not only are donors quite unique in the symptoms they help, don't help, or even aggravate, but also that recipients are quite unique in how they respond to each donor. The fact that you're even collecting and compiling these data is a godsend though!

 

[Michael Harrop]

I see this as just being adapted to different environments and lifestyles. Most of us don't need to hunt and build tools using our muscles as the sole energy source, or live in huts with dirt floors. I'm sure the average Hadza would see some things that the average Westerner does that would seem "super-human" to him/her.

I don't think so, and I don't think the skin color comparison is applicable. To be more specific, it was their endurance when hunting, and them sleeping in the cold on the hard ground with no shirt or blanket. Both of these are gut microbiome related.

we not only don't know for sure what is "ideal", it may well be that the "ideal" is actually different for different recipients

Donor-matching is covered in various places, including the wiki and HMorg blog.

My point is, YOUR ideal criteria might not be the same as anyone else's.

I think this stems from the lack of understanding that HM's criteria are evidence-based. Your criteria seem based on personal notions. There have been many people who have selected donors like that, and they often end up suffering the consequences of it.

So my point in making this post was, I'm wondering how much of a pool you have who might fit MY criteria of "good" (both what I'm speculating now, AND what I will learn if/as I try donors and get feedback that refines my understanding of how I react to things). And by extension, how many other recipients could maybe find great donors among people who fulfilled a significant number of your criteria but were not "ideal".

I have thousands of these types of donors (the top tier - I have ~6 tiers). Anyone is welcome to experiment with them as they like. So far, there hasn't been any interest.

including both your own experiences

There are many more than 2 from HMorg donors. I think there's 6.

It's clear that not only are donors quite unique in the symptoms they help, don't help, or even aggravate, but also that recipients are quite unique in how they respond to each donor. The fact that you're even collecting and compiling these data is a godsend though!

Yep. Detailed reports are essential. It's insane that I have to threaten to ban recipients if they don't send in their results. It's incredibly frustrating how unintelligently most people are going about FMT.

 

[SFBayFMT5]

I think this stems from the lack of understanding that HM's criteria are evidence-based. Your criteria seem based on personal notions. There have been many people who have selected donors like that, and they often end up suffering the consequences of it.

Well, it seems that despite using quite a few donors, your health still has never gone above 4/10 in the reports. So, I wouldn't say that you have fully solved the donor selection puzzle even for yourself, let alone anyone else. Yes, your experiences are still valuable to all of us.

FWIW, my only FMT so far, back in 2015, was through OpenBiome, who you apparently love to hate. It was very successful for a few months, before something triggered a reversal of the benefit.

I have thousands of these types of donors (the top tier - I have ~6 tiers). Anyone is welcome to experiment with them as they like. So far, there hasn't been any interest.

Well I for one am very interested! I'd like to find out more about the potential donors you have found who may not have fulfilled all your standards but are still possibly good donors.

At what "tier" are potential donors tested for pathogens and other safety concerns? Since testing isn't that cheap I'd assume that you don't test anyone who applies, but rather only those who have made it to a certain stage of the process.

There are many more than 2 from HMorg donors. I think there's 6.

Yes, there are 7 HMorg donors listed on the spreadsheet now and I remember there were others in the past. And I'm aware that you have rated/ranked them all.

By "both" I was referring to your own experiences, AND the experiences of everyone else who has submitted their experience. And yes, I'm aware that amounts to more than 2 people for some donors--some donors have 5+ "data points" and others have only 1 or 2.

Yep. Detailed reports are essential. It's insane that I have to threaten to ban recipients if they don't send in their results. It's incredibly frustrating how unintelligently most people are going about FMT.

So you actually require people to report back on their experiences?

Well, I wouldn't blame the recipients for most of the lack of information about FMT donors. I mentioned above that my last and only FMT was through OpenBiome. Well, since the effect for the first few months was nothing short of miraculous, of course I wanted another one. But they only supply FMT to treat C. diff, which I had before this FMT but it did not recur despite my other symptoms relapsing (*).

So of course the next best thing would be to try to get a similar donor from elsewhere. So naturally I contacted OpenBiome seeking whatever information they would give me about my donor. However, I got a response that they are forbidden by law from disclosing any information about their donors (other than of course that none of OpenBiome's exclusion criteria applied to him/her, as is required of ALL their donors).

I don't know if Taymount, Dr. Klop/NovelBiome, or any of the other clinics are any better in this regard. But seeing the restrictions OpenBiome operates under, I'm certainly not about to put any blame on the recipients. Some if not most of us would be very happy to be able to connect our experiences with specific donors to help both ourselves and others make better decisions down the line, but we aren't given the tools. I wholeheartedly believe the people who say that FMTs from OpenBiome didn't help them, but who knows whether this was due to the donor, their condition not being a good candidate for FMT, or both. And we will probably NEVER know.


(*)Yes, the ostensible purpose of the FMT was to treat C. diff, of which I was on my third recurrence at the time. However, the most dramatic effects were on symptoms that started many years before I even began the course of antibiotics that gave me the C. diff. Now, of course I'm sure the folks at OpenBiome were never told about these other things that happened. So, given that only they know which donors they sent whom, nobody can connect the dots. That's exactly the problem.

 

[Riceandbeans32]

I have thousands of these types of donors (the top tier - I have ~6 tiers). Anyone is welcome to experiment with them as they like. So far, there hasn't been any interest.

I wouldn’t mind experimenting with them. I noticed you added some new potential donors to the list. Do you plan on adding more of their information (stool pics, physical, questionnaires, etc.)?

 

[Michael Harrop]

I wouldn’t mind experimenting with them. I noticed you added some new potential donors to the list. Do you plan on adding more of their information (stool pics, physical, questionnaires, etc.)?

Yes, I just interviewed one 2 days ago, and I'm interviewing another one today.

Well, it seems that despite using quite a few donors, your health still has never gone above 4/10 in the reports

Yes, because I haven't been able to find a single donor with a similar stool type to the 3 most effective donors I previously used.

OpenBiome, who you apparently love to hate. It was very successful for a few months

Any place like that is a roll of the dice. Some people improve, others get much worse. The key is the risk-benefit ratio, which can only be known by publicly tracking & reporting results like HM does. I think the risk-benefit ratio of HM's donors is by far the best of any source. There are no nightmare results from our donors like there commonly are from other sources.

At what "tier" are potential donors tested for pathogens and other safety concerns? Since testing isn't that cheap I'd assume that you don't test anyone who applies, but rather only those who have made it to a certain stage of the process.

Correct. As noted in the most recent blog, testing is a very small part of the process. Only a handful of donors get to that stage. This recent study failed to identify effective donors based on testing. That highlights the importance of having other criteria (such as mine).

As for more info on the donors in the top tiers, I rank donors based on their questionnaire, physical fitness, and stool type. Physical/athletic ability is not a significant ranking factor. I have around 1,000 donors in the top tier, then I have 5 more tiers -- the 2nd is "could be helpful but probably carries more risk". The 3rd tier is "C. diff only" -- should be safe and effective for people with C. diff but I wouldn't recommend using them for anything else. Then I have 3 more tiers of "decent, but I wouldn't recommend using them". Then I have a "good but bad stool type" tier, and a "good but too old", and an "interesting/close but I wouldn't recommend using them". I have tiers for Canada, the US (split into adults & children), and overseas.

So you actually require people to report back on their experiences?

Yes. A quote from the original blog:

A few months after orders were shipped out, and a month after recipients were requested to send in their results, only one person (of more than a dozen) had sent in their results. So I informed recipients that they wouldn't be able to order from any of our donors ever again if they didn't send in their results. Only around 40% of recipients have sent in their results. So possibly the rest are dead. At least we know that the fatality rate isn't over 60%. Of the ones who didn’t die, it seems like most experience mild to moderate benefits, while some people experienced no benefits.

I now continue to notify recipients that if they do not turn in their results they cannot order again.

I don't know if Taymount, Dr. Klop/NovelBiome, or any of the other clinics are any better in this regard.

Certainly not. https://humanmicrobiome.info/where-to-get-fmt/

I'm certainly not about to put any blame on the recipients

Why? They can, and should, easily post their detailed experiences & reports publicly. IE: https://forum.humanmicrobiome.info/forums/fmt-clinics-experiences-reviews/

Some if not most of us would be very happy to be able to connect our experiences with specific donors to help both ourselves and others make better decisions down the line, but we aren't given the tools

You don't need to connect it to the specific donor. Connecting it to the provider is adequate. If the provider does not provide donor info then that's on them.

And we will probably NEVER know

Due to them not posting their results...

their condition not being a good candidate for FMT

I think this shows ignorance about the microbiome. There are few to no such conditions.

 

[SFBayFMT5]

Yes, because I haven't been able to find a single donor with a similar stool type to the 3 most effective donors I previously used.

So the best donors (according to your own experience) are no longer donating?

Correct. As noted in the most recent blog, testing is a very small part of the process. Only a handful of donors get to that stage. This recent study failed to identify effective donors based on testing. That highlights the importance of having other criteria (such as mine).

I think you misunderstood. The type of "testing" I was referring to was NOT for microbiome richness, presence of specific supposedly beneficial bacteria, or for matching donors and recipients based on overall profile.

The type of testing I was asking about was to rule out obvious safety/infection concerns due to known pathogens (including but not limited to hepatitis B/C, HIV, giardia, etc.). No more, no less. I was also referring to screening (by interview) for illnesses (e.g. cancer, heart disease, autoimmune disorders, bipolar disorder, etc.) that are not infections but are still recognized diseases.

I wanted to know, at which tier are these clearly actually sick people weeded out from your pool? The HMorg website says nothing about this. It doesn't even list what pathogens ARE tested for or what non-infectious diseases ARE screened for. Given that all the other FMT providers clearly provide this information, I'm starting to wonder how transparent you are in how you operate.

You don't need to connect it to the specific donor. Connecting it to the provider is adequate. If the provider does not provide donor info then that's on them.

It's NOT adequate. That's like saying if you had an allergic reaction after eating in a restaurant, it is adequate to specify the restaurant but not what menu item you offered. Or alternatively, if you had an adverse effect from a medication, that it's adequate to specify the pharmacy but not the medication.

There are SOME attributes that pertain to the provider as a whole. Like the cleanliness of the lab, how quickly the stool is processed and frozen after collection, things like that. And then there is the condition the recipient was trying to treat--some are likely easier to cure than others, and reporting success or failure with any provider gives information on the general cure rate of different conditions from FMT in general. But then there is the donor. I would expect that donor variability is every bit as wide between donors for one provider as it is between providers. Just look at your own results with the donors you have tried, that are all from one "provider" (your organization).

As another example, there was a provider a while back I remember reading about on FMT forums (they are now out of business AFAIK), and they had two donors, "MG" and "AR". For most conditions people had better results with MG, and in fact some got worse from AR. But for certain conditions, mainly neuropsychiatric ones if I remember, success with AR was better. Now, this provider was clear about the fact that they had two donors and people knew which one they were getting.

But suppose this hadn't been the case. Suppose that this provider had operated the way OpenBiome does. Then nobody could trace their benefit, or lack thereof, to whether they had received MG or AR. And unless the provider had asked recipients to report back on what condition they were treating AND whether they improved, the provider itself could not do statistical analysis to determine that the donor made a difference. So nobody would have found this out. And even if someone DID know, there would be no way for future recipients to act on this information. This is the case for any organization that provides stool just for C. diff--the only thing they will ever find out is the success rate at curing C. diff, which seems to be less sensitive to donor than anything else.

So no, I don't fault patients here at all.

 

[Michael Harrop]

So the best donors (according to your own experience) are no longer donating?

They were people I found prior to HM, and yes, they wouldn't do more than 1 each.

The type of testing I was asking about

I was referring to both. Those safety tests are extremely basic and can in no way be relied upon for safety. Stool sources that tout their rigorous testing as proof of safety should be avoided.

I wanted to know, at which tier are these clearly actually sick people weeded out from your pool?

Most would fail the questionnaire; the rest wouldn't pass the stool & fitness portion. I've interviewed a few dozen of the top candidates. After that, only a handful went through blood & stool testing.

It doesn't even list what pathogens ARE tested for or what non-infectious diseases ARE screened for.

It does, at the top of the Orders page there are two links to the EU and International Guidelines.

I'm starting to wonder how transparent you are in how you operate.

HM is by far the most transparent. There isn't even a close second.

It's NOT adequate. That's like saying

You misunderstand me. Of course it's ideal to be able to identify a donor, which is why I do that for HM. But if the source does not allow that then you still need to post a detailed report for the source. You previously worded it as if it was excusable to not post a public report at all since the source wouldn't let you identify a donor. That's not a valid excuse. Recipients hold blame for not posting detailed reports; regardless of the source.

Anyway, we're getting a little off-topic here.

And unless the provider had asked recipients to report back on what condition they were treating AND whether they improved, the provider itself could not do statistical analysis to determine that the donor made a difference. So nobody would have found this out. And even if someone DID know, there would be no way for future recipients to act on this information. This is the case for any organization that provides stool just for C. diff--the only thing they will ever find out is the success rate at curing C. diff, which seems to be less sensitive to donor than anything else.

Indeed. That doesn't need to be the case though, and it shouldn't be the case. I wrote to the FDA about this. I think HM is the only source that is properly tracking & reporting results, and thus providing informed consent. Other providers are a black box and many people are shocked when they develop major new problems afterward.

So no, I don't fault patients here at all.

I don't think this makes sense. See above. Patients can and should be posting their detailed results publicly to see which providers are the best/worst on average.

 

[SFBayFMT5]

They were people I found prior to HM, and yes, they wouldn't do more than 1 each.

Sorry to hear that.

I was referring to both. Those safety tests are extremely basic and can in no way be relied upon for safety. Stool sources that tout their rigorous testing as proof of safety should be avoided.


Most would fail the questionnaire; the rest wouldn't pass the stool & fitness portion. I've interviewed a few dozen of the top candidates. After that, only a handful went through blood & stool testing.

So this is a small subfraction of even the topmost tier (the one with thousands of members)?

And so, if any of us were to pursue any of the donors that are NOT already in the spreadsheet of current HMorg donors, we as patients would need to arrange and pay for this blood and stool testing? If this is correct, do you have some sort of protocol we can follow so that these tests can be ordered? Obviously we aren't doctors, and I'd imagine that most doctors the prospective donors are already seeing would quite possibly not order a battery of EU/international screening tests for their patients, absent a medical need for treating these patients' own health problems, lest they be seen as "condoning" FMT.

It does, at the top of the Orders page there are two links to the EU and International Guidelines.

Ok so you test according to those guidelines?

 

[Michael Harrop]

So this is a small subfraction of even the topmost tier (the one with thousands of members)?

Ok so you test according to those guidelines?

Yes.

And so, if any of us were to pursue any of the donors that are NOT already in the spreadsheet of current HMorg donors, we as patients would need to arrange and pay for this blood and stool testing?

Up to you. If a bunch of people want to debate activating a certain donor you can pair up to split the testing costs. This forum can be used for that but so far no one has. Some people have used untested donors.

do you have some sort of protocol we can follow so that these tests can be ordered?

Covered here https://humanmicrobiome.info/fmt/. If anyone decides on a donor I can send them to their doctor to get the tests done. You'll have to pre-pay. Doctors are generally willing to order the tests if we pay for them.

 

[SFBayFMT5]

It's interesting that the two best donors are the ones who were the least willing to donate. It makes me wonder if people who have the best microbiomes almost certainly have full lives because the strength that their microbiome gives them allows them to handle it, and so FMT is usually not worth their time, whereas it's those with sub-optimal microbiomes who are sitting around possibly seeing donation opportunities. A bit like in dating where it feels like the good people are always taken...

Though possibly you have had lots of BAD donors too who donate only once.

Up to you. If a bunch of people want to debate activating a certain donor you can pair up to split the testing costs. This forum can be used for that but so far no one has.

That's what you call it, huh? Activating donors? Well then I know if I see that term around what it means.

Some people have used untested donors.

Eeek. I would never do that except MAYBE in some VERY unique circumstances. Like possibly with a donor who is perfect in every other way (and this would have to be after I've already tried enough donors to have some empirical validation of what "perfect" is), who is likely a relatively young child growing up in very healthy surroundings where exposure to risky behaviors is highly unlikely, and where I know them well enough to trust they will be truthful about that AND the donor is unwilling/unable to test. Even then... like a few hundred $ for the peace of mind is probably worth it.

Covered here https://humanmicrobiome.info/fmt/. If anyone decides on a donor I can send them to their doctor to get the tests done. You'll have to pre-pay. Doctors are generally willing to order the tests if we pay for them.

Thanks!

 

[Michael Harrop]

It's interesting that the two best donors are the ones who were the least willing to donate. It makes me wonder if people who have the best microbiomes almost certainly have full lives because the strength that their microbiome gives them allows them to handle it, and so FMT is usually not worth their time, whereas it's those with sub-optimal microbiomes who are sitting around possibly seeing donation opportunities. A bit like in dating where it feels like the good people are always taken...

Yep. Other people have suggested similar things.

FMT needs to be widely advertised as a way that these one in a million lucky people can be the source of a cure for millions/billions of people, in order to motivate them to sign up. But I have no way to do that. It either requires a massively expensive advertising campaign, or it requires the millions of unhealthy people to do something. I've sent letters to top NBA and NFL athletes about it, but I didn't notice any of them applying. And the millions of sick people who could be cured have so far refused to lift a finger to help.

 

[Otto Kretschmer]

@Michael Harrop

Have you searched for donors among the military? Soldiers need to be in pretty good shape and special forces operatives are selected for good health.

As a slightly off topic note, I think one of the main issues with FMT is going to be money. FMT cannot be patented so there is little incentive for corporations to put money into ridiculously rxpensive phase 3 trials of FMT. They prefer to put that money into drugs that can be patented and then sold for an inflated price.

 

[SFBayFMT5]

Yep. Other people have suggested similar things.

FMT needs to be widely advertised as a way that these one in a million lucky people can be the source of a cure for millions/billions of people, in order to motivate them to sign up. But I have no way to do that. It either requires a massively expensive advertising campaign, or it requires the millions of unhealthy people to do something. I've sent letters to top NBA and NFL athletes about it, but I didn't notice any of them applying. And the millions of sick people who could be cured have so far refused to lift a finger to help.

But were those good donors who only donated once top NBA or NFL athletes?

As I said in my first message, I think that a good donor could just as easily be the PTA leader of the local school or a member of the nearest city's ballet organization as being a famous professional athlete. While their fitness might not be as advertised as that of the sports legend, provided they are found they should be more available. Though they still might be people who are doing a lot with their lives, especially compared to us chronically ill folks.

 

[Michael Harrop]

Have you searched for donors among the military?

I've had a good amount of them apply, and I've offered them referral rewards to recruit their buddies, but I have no way to target this/any group.

FMT cannot be patented so there is little incentive for corporations

Yes, I discussed that in the most recent blogs.

But were those good donors who only donated once top NBA or NFL athletes?

No, just "regular" people.

 

[SFBayFMT5]

I wouldn’t mind experimenting with them. I noticed you added some new potential donors to the list. Do you plan on adding more of their information (stool pics, physical, questionnaires, etc.)?

To both you and Michael Harrop--where is the list of potential donors?

 

[Michael Harrop]

You can email me for it. I'm choosing not to advertise it publicly for now.

 

[SFBayFMT5]

You can email me for it. I'm choosing not to advertise it publicly for now.

I'm assuming using the email on the orders page of HMorg?

 

[Michael Harrop]

Yeah, that works.