Planning on raising donor payouts to 1 million dollars per stool, and a half-a-million-dollar referral reward (HumanMicrobes.org) Sources

[Michael Harrop]

The current model is not viable. Under the current circumstances, there is not much demand for the caliber of donor where you pay $1000 for a 50% chance at getting 50% better. Donors are unhappy with the lack of demand, and it may be discouraging new donors as well. I don't think this is a solvable problem. I've screened 1.2 million donor applicants without finding one that meets the ideal criteria, and the donors that don't meet the ideal criteria have not been highly effective for most people.

Demand was never a concern or focus of mine, but this obviously isn't going to work if there is no demand for donors. Word-of-mouth referrals appear to be minimal, probably due to people wanting a cure rather than a moderate chance for a small-moderate improvement. I left Reddit and Facebook due to these companies' unethical and highly problematic behavior, so I'm not active on any major social media sites where I can spread the word to people. Small forums like this one don't show up on search engines, and most people seem to be too lazy to join them and keep using problematic sites like Reddit and Facebook. Twitter and similar sites seem to only be useful if you have a large following. Instagram and TikTok have been quite useful for recruiting donors, but haven't had an impact on the demand end.

The more disreputable providers thrive on these problematic social media sites. One of the worst ones controls and astroturfs the largest Facebook groups, and the Reddit admins are now allowing them to proliferate on Reddit despite having been given ample evidence to ban the group site-wide. When the people with integrity leave, the people without it fill the void and flourish. The people too lazy and unintelligent to leave these websites will suffer the consequences of it, but there is little I can do about it, and I'm done trying to solve every problem myself. People have been unwilling to fight for better options and ditch large companies when they display problematic behavior. People will now be stuck with a source where you have a 50% chance of getting worse instead of a 50% chance of no improvement.

Nearly every patient community I've participated in (whether it be on small forums or large social media sites) has been willfully ignorant on the gut microbiome and FMT, and extremely unmotivated to do anything to better their situation, so it seems largely useless to spend time on outreach to these groups.

Given the events I've discussed in recent blogs:

• I've screened 1.2 million applicants without finding one that meets the ideal criteria
• Raising donor payouts to $500 per stool seemed to be a major catalyst resulting in a huge amount of applications
• Most applicants are average people looking to make some extra money, are not the ideal demographic, and don't come close to qualifying
• The most likely people to qualify seem to be the least likely to apply [1][2]
• People who meet the ideal criteria are far more rare than I expected

I intend to increase donor payouts to a million dollars per stool. This will make it more obvious that I'm targeting exceptionally rare and healthy people. It would also reflect the magnitude of what such a "super-donor" is likely capable of. This would obviously be detrimental in many ways (few recipients can afford that) but what's happening now is not working. I'm also going to offer a half-a-million-dollar reward to motivate people to recruit these rare donors.

The best case scenario with the FDA is that they allow FMT to be done under medical supervision for any condition, and mandates public tracking & reporting of results that are donor-specific & source-specific, along with appropriate warnings & education so that patients and doctors understand the experimental nature of FMT and the importance of donor-quality. It may even be beneficial to have one source/website that all results are required to be submitted to. This would ensure that patients & doctors can accurately compare donors from all sources. Patients are then more confident to try FMT since it will be in a more official and supervised capacity. They'll see how much better our donors are than all other sources and opt to use our donors. We get to try other top donors that currently don't have demand, and research groups help test our donors to try to elucidate the donor-quality puzzle.

That's probably unlikely, and even if it happened it wouldn't solve the problem that the most effective donors seem to be the least likely to apply. So I don't know what else to do. The FDA is probably more likely to restrict the project so I might as well attempt one last-ditch effort.

I've already written up the blog post. I'm posting this thread as a last chance for anyone to intervene if they don't like this course of action and think there is a viable alternative. But this shouldn't be a surprise to anyone. I've given many hints and warnings about this over the years. And I've been clear that I am determined to do what it takes to acquire a highly effective donor.

I will do my best to make sure that the few people who provided significant help will be able to access these highly effective donors for an affordable price. I plan to post the blog after I find out what the FDA's stance is on the whole situation. My meeting with them is in early July.

 

[Fmt2024]

This would probably be a good last ditch effort before the FDA gets involved. It would be unfortunate for recipients but it would help this project gain publicity and the attention of top tier donors. It would attract many applications before the FDA makes their decision.

I don’t think we necessarily need to find a super donor before the FDA makes their decision but it would be difficult to find someone willing to pay one million dollars per stool within that time frame, in case the FDA restricts advertising.

Just me brainstorming possible alternatives:

1. Keep prices the same and wait to see what the FDA says. Things might go in our favor and the project may be able to continue close to as is (probably less likely). It may just take some more time to find a super donor.

2. Increase prices to $5,000 per stool. This would gain attention from potential donors and applicants who have not followed through. This would obviously not solve the FDA issue.

3. Consider testing a different hypothesis. I fully support and believe in the current goal to find a super donor but there has also been alot of evidence on the importance of donor matching (has been discussed on here before). With a pool of 1.2 million applicants, there is a decent chance there are donors who are effective at treating certain conditions (CFS, metabolic syndrome, constipation, etc). This would involve more trial and error and could change the structure of the project because there would be less of a need to advertise “FMT” on the website, in case the FDA prohibits this. It might also lead to more sales/revenue for donors because there would be more demand from recipients.

I don’t think the FDA getting involved is the be all end all. It could make things incredibly harder but I, and I'm sure at least a few others, are prepared to become more involved and help in whatever direction this project goes. Im personally not ready to give up on this project. If medical supervision is required for this project to move forward, I am willing to what whatever I can to help with that as well.

 

[Michael Harrop]

in case the FDA restricts advertising

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HM already doesn't advertise anywhere. And in the past, the only advertisements I've purchased were for recruiting donors, which the FDA doesn't care about. The donors are being recruited from organic videos people are making on social media. I have an email list of 1.2 million people to whom I'm going to offer the $500k referral reward. That list includes many of the people who've already made social media videos, world-class athletes, etc.

I don't understand point 3.

 

[Fmt2024]

Sorry I could’ve worded my post better. I meant if the FDA says the website can’t say “the stool is for FMT”, then it would make it harder to find a recipient willing to pay 1 million dollars per stool.

Point 3 is not the best. I meant we could focus more on activating current top applicants (since its been difficult to find the ideal donor) and see if they help recipients with certain conditions. For example, donor 1 might help people with ME/CFS and donor 2 might help with UC. It might be more risky because it involves using donors that do not meet your criteria for an ideal donor but, honestly, your top applicants are way better than whats currently out there right now. It might be worth considering depending on what the FDA says. If they try to make it impossible for this project to go on, there are dozens of applicants that might be worth activating to see if they help.

I'm going to offer the $500k referral reward.

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I think this is a great idea.

 

[Michael Harrop]

we could focus more on activating current top applicants

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This is entirely based on demand. There hasn't been demand for other donors on the list so I haven't taken steps to activate them. And some of them dropped out due to that.

 

[karent]

Why not focus stool donors that are athletes? Most universities & colleges, or lower education have an athletic program. And they will need help in tuition, etc.
The other idea, is how to encourage the FDA to get this approved for any GI issues? If you set the pace, we can follow by petitioning the FDA as many of us are silent sufferers.
The final idea is instructions on how to convince drs. to do an IND (investigative new drug) under Compassionate Care.

 

[Fmt2024]

This is entirely based on demand. There hasn't been demand for other donors on the list so I haven't taken steps to activate them. And some of them dropped out due to that.

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Ahh I see, makes sense.

 

[Michael Harrop]

Why not focus stool donors that are athletes?

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I was originally doing that, but it's extremely difficult, time-consuming, and largely unfruitful. It's difficult to find emails/contacts for them, and the vast majority do not reply when directly contacted.

Most universities & colleges, or lower education have an athletic program.

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I reached out to all the major universities' athletic departments and none of them were willing to pass on the information to their athletes, even after the whole "name, image, likeness" thing.

The other idea, is how to encourage the FDA to get this approved for any GI issues? If you set the pace, we can follow by petitioning the FDA as many of us are silent sufferers.

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I have written to the FDA numerous times, and shared my letters publicly to encourage others to do so as well. It seemed largely fruitless. But if I learn about them specifically soliciting feedback again I'll post on the forum about it. I'll also have a better idea of the situation after my meeting with them.

The final idea is instructions on how to convince drs. to do an IND (investigative new drug) under Compassionate Care.

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There is info/discussion on that here: https://forum.humanmicrobiome.info/threads/the-fda-and-fmt-regulation-mar-2024-humanmicrobes-org.303/post-691

It seems like a nice idea that is very difficult in practice. I've heard a lot about how onerous the process is, which is why everyone complained and got the FDA to allow FMT to be done for C. diff without an IND.

It seems unlikely that most doctors & recipients would be willing to go through the process.

 

[SFBayFMT5]

A 50% success rate isn't bad--IF you can afford to try 4-5 donors.

Imagine there were a source offering a deal like this--for $500, you get 10 capsules each from 5 different donors. At $500 for 50 capsules, this is the same price as we're currently getting them at from HMorg. After trying these in series, each patient orders more stool from whichever donor was the most promising out of the five.

In this "microbiome speed dating" model, provided the donor pool is diverse enough that people's results with different donors are independent, with a 50% success rate per donor, the fraction of patients who don't achieve success could be as low as (1/2)^5, or about 3%. Now, I understand there are logistical issues with this because the donors live far apart and so combining orders presents problems--but let's say you can work out something where everyone sends capsules to a central location, at least with regards to these initial orders (follow-up orders from people who know who looks promising could come straight from donors).

I would JUMP at such an opportunity. And the amount of data this would provide as far as what conditions benefit from which donors would be invaluable. I see something like this as VASTLY more promising than the idea that you could ever find a donor who treats/cures more people per dollar spent than you get for a 50% effective donor who costs $1000 for a treatment. I mean, let's say a treatment costs $5000--then even if he/she was a 99% effective donor it STILL wouldn't cure as many people per dollar as the 50% effective donor--and that's assuming donors that universally effective even EXIST.

There's practically nothing in all of medicine that reliable, and nothing to suggest it exists here. Yes, it seems there are donors who are considerably better than others, but nobody claims a 95%+ success rate for even a top donor. The Moayyedi et. al. study, one of the classic ones cited in support of the "super-donor effect", only had a 43% success rate with their better donor. And it's not like 50 people each tried one of the two donors (#1 and #4) who helped you the best, and 100% of them got better, vs. 50% with the typical HMorg donor.

So there's really nothing suggesting that raising prices, just so you can reject even MORE donors (you already have thousands of people who were willing, but you didn't end up activating) is money well spent. The ONLY way I see raising prices helping in terms of outcome is if you used the funds to activate more donors. You say the demand isn't there--well the fact that a few people are even trying your UNtested donors (and one found "extreme success" only with his 4th donor: https://forum.humanmicrobiome.info/threads/extreme-success-from-sd_es_2015-for-severe-anxiety-depression-and-ibs.380/) is proof that people need/want a broader, more diverse donor pool, NOT to pay more for an even narrower pool!


Your own greatest success was with two of the first five donors you tried. To attract these, you didn't need to charge $1000 per stool or have a direct line to a world class athletic facility. You yourself said

We did specifically look up and contact hundreds of college and professional athletes in the past, and the vast majority did not qualify or rank high. Including some of the top athletes in the world.

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and also that these two donors were just everyday people, people who presumably didn't demand anything even remotely close to a ludicrous one million dollars per stool. It seems like something happened between then and now that kept more people like those two from reaching out to you--OR maybe you are doing something to reject them offhand that you weren't doing back then--you need to think about what that is.

 

[Michael Harrop]

You say the demand isn't there--well the fact that a few people are even trying your UNtested donors (and one found "extreme success" only with his 4th donor is proof that people need/want a broader, more diverse donor pool, NOT to pay more for an even narrower pool!

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To me, that's proof that people aren't interested in spending money to activate new donors. Not a single other person has been interested in that donor, despite it being likely that they're the current #1 ranked donor.

Your suggestion is interesting, but it would require spending thousands of dollars on blood & stool testing for all those donors, which people have not shown interest in. And it would make me a stool bank instead of a donor bank. Regulators would probably frown on that even more.

Your suggestion doesn't address the fact that I've screened 1.2 million people without finding one that meets the set of criteria that I know exists. The primary point of offering $1 million is to finally get one or more applicants that meet that criteria, and see if they're highly effective for most people.

Your own greatest success was with two of the first five donors you tried. To attract these, you didn't need to charge $1000 per stool or have a direct line to a world class athletic facility.

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They refused to donate more than once. One of them didn't want to do it at all. No one like them has applied despite offering $180k/yr.

OR maybe you are doing something to reject them offhand that you weren't doing back then

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I'm not. I've thought about that. I'm using the same criteria as I did back then.

 

[smartperson44]

How about asking the donors (the ones you have screened) itself to cover their blood and stool test costs?

 

[SFBayFMT5]

To me, that's proof that people aren't interested in spending money to activate new donors. Not a single other person has been interested in that donor, despite it being likely that they're the current #1 ranked donor.

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In what sense is SD-ES-2015 "likely the current #1 ranked donor"?

Presumably not according to your screening criteria, as in that case you would have prioritized testing this donor ahead of others. Is it according to the percentage of people who tried the donor who were helped? the fact that this one single patient (the one whose report I linked) improved greatly with this donor after failing with three other donors?

I only know of three experiences with this SD-ES-2015--two in the spreadsheet (including your own) and the one linked. With an N of 3, ranking is quite possibly not reliable. Now, I do personally think that this donor is promising given that someone with similar symptoms to mine had great success, but it's still just an educated speculation given how few reports there are.

The seeming lack of interest likely relates to the fact that someone who pays to activate a donor doesn't get anything in return (I mean, aside from what everyone gets, namely a tested donor that they can order from). I doubt any other FMT provider could operate this way--state that they have a good donor who hasn't been tested, wait for patients (or their doctors who perform FMTs, like mine did in 2015 for C. diff) to fund the testing, then not at least give some sort of discount, or maybe credit for buying from other donors, in return.

The point is, if someone funds testing and then doesn't end up benefiting from that donor, then he/she is simply out the money. At that point, what is the benefit over contacting another donor from outside HMorg who also isn't tested, and who may be closer logistically hence easier shipping? This isn't just a theoretical point--I'm currently in a conversation with someone else looking for a donor. I told her about HMorg and how there are several donors you have who you list who aren't tested, but that you welcome people to test them. She is willing to pay $1000 for testing and finds some of the donors promising, but was assuming that if she were to pay to test a donor that you yourself weren't going to test, that she and the donor could then agree on a price for a subsequent transplant that reflects the fact that she funded the testing. When I told her that this was likely not the case, she wasn't nearly as interested in participating.

Your suggestion is interesting, but it would require spending thousands of dollars on blood & stool testing for all those donors, which people have not shown interest in. And it would make me a stool bank instead of a donor bank. Regulators would probably frown on that even more.

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I see.

Your suggestion doesn't address the fact that I've screened 1.2 million people without finding one that meets the set of criteria that I know exists. The primary point of offering $1 million is to finally get one or more applicants that meet that criteria, and see if they're highly effective for most people.


They refused to donate more than once. One of them didn't want to do it at all. No one like them has applied despite offering $180k/yr.

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I'm wondering why this is. I don't know how many people you screened up until finding Donor #4. But obviously considerably less than 1 million. Let's say 100,000. The probability that two of the first 100,000 were better than any of the next 1.2 million, i.e. that both the 1st and 2nd best were in those first 100,000, is only about 1%. It's also quite possible you were offering LESS money than what you are at this point when at least Donor #1 approached you, which makes the odds even longer if the main driving factor is in fact that good quality donors need higher financial incentives than poor ones.

The real numbers may be somewhat different, but my point is, it seems like there's something going on here where increasing the payment to potential donors has only attracted more BAD donors, and there's no suggestion from actual experience (at least from what you've told us) that raising payments even higher will reverse this trend.

 

[Michael Harrop]

In what sense is SD-ES-2015 "likely the current #1 ranked donor"?

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Due to the same factors I use to screen and rank all donors, as well as her results so far.

Presumably not according to your screening criteria, as in that case you would have prioritized testing this donor ahead of others.

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I do not prioritize testing any donors. I screen and rank donors. That is all. It's completely up to recipients what donors to test and use.

Other donors who've gone through the blood & stool testing applied years earlier than SD-ES.

I only know of three experiences with this SD-ES-2015--two in the spreadsheet (including your own) and the one linked.

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The linked one is likely one of the ones in the spreadsheet, they just didn't bother adding their link to the sheet.

wait for patients (or their doctors) to fund the testing, then not at least give some sort of discount, or maybe credit for buying from other donors, in return.

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The expected process is for enough recipients to be interested in a donor, and split the costs of the testing. That's how it was done with previous donors. So far, virtually no one has been interested in testing new donors.

One person once paid the full cost for the testing and I paid them back by charging other recipients a testing fee.

was assuming that if she were to pay to test a donor that you yourself weren't going to test, that she and the donor could then agree on a price for a subsequent transplant that reflects the fact that she funded the testing. When I told her that this was likely not the case, she wasn't nearly as interested in participating.

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Yeah, absolutely not. For direct access to a donor, one would have to pay an amount that reflects the years of work it took me to acquire that donor. I'm not sure why she would assume that I'd spend years finding donors only to hand them over to her for free.

I'm wondering why this is. I don't know how many people you screened up until finding Donor #4. But obviously considerably less than 1 million.

my point is, it seems like there's something going on here where increasing the payment to potential donors has only attracted more BAD donors, and there's no suggestion from actual experience (at least from what you've told us) that raising payments even higher will reverse this trend.

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So am I. I wasn't offering either of them any money, and I hadn't screened a large number of donors. It seemed that the first one was talked into it by her mother. The second one... a few possibilities -- curiosity of various types. It's possible she wanted something from me, but I wasn't sure.

Firstly, I've mentioned that the videos that are going viral to recruit people are appealing to average people wanting to make some extra money. They do not explain that we are looking for extremely healthy & rare people who may be able to cure diseases.

Secondly, I think the price increases have absolutely helped to recruit people who previously wouldn't have given it any consideration. I think a further price increase, in addition to the large referral reward, will motivate people to target the ideal demographic, and will cause people in the ideal demographic to give it much more consideration. Currently, as I said, most people in the target demographic do not respond. And most of the people in a good position to recruit top athletes are not interested in the $5k referral reward. And some of the ones who are run into other roadblocks which they don't specify.

The probability that [...] is only about 1%.

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Indeed. There is the possibility that this is a fake, dystopian simulation [1][2]. Perhaps as a punishment.

Something else relevant is that I acquired these two donors by specifically contacting/picking them based on their physical traits. I went to them and asked them to be a donor. Whereas the vast majority of the 1.2 million applicants are not people I chose; they saw a "get $500 for your poop" video and applied. The vast majority of people I pick and contact directly do not respond and do not apply.

 

[SFBayFMT5]

Due to the same factors I use to screen and rank all donors, as well as her results so far.


I do not prioritize testing any donors. I screen and rank donors. That is all. It's completely up to recipients what donors to test and use.

Other donors who've gone through the blood & stool testing applied years earlier than SD-ES.

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Then why isn't SD-ES-2015 ahead in line to be tested over the two other donors who you said, in a private communication, were currently in the process of being activated? I won't list them by name here, as you never said this publicly, but these were two donors who (as far as I can see) have never even been MENTIONED anywhere on this forum, or on any of the public-facing pages of HMorg (including the spreadsheet).

There is literally no information on success with these donors, and unless some people you know personally (i.e. not through posts here) have stepped offering to test those donors specifically, it doesn't seem like there is any reason to put those ahead of ones who have documented results. One of those donors even has said that they are NOT willing to make capsules--so even IF that donor were to be tested, it would not provide a source of capsules anyway.

In terms of the general statement "I do not prioritize testing any donors. I screen and rank donors. That is all."--well that is not exactly apparent from the stated goals of HMorg. As testing donors is a major part of the function of FMT sources, the fact of this NOT being what you do would bear stating clearly as it's not what people expect from a FMT source. Someone previously linked a Dutch site, gezonde-darmflora.nl, somewhere on the forum, and all four of their donors clearly have blood and stool test results. And it goes without saying that OpenBiome, Taymount, etc. test their donors.

The linked one is likely one of the ones in the spreadsheet, they just didn't bother adding their link to the sheet.

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I see--so even fewer experiences. Both experiences are positive though, which is a good sign.

The expected process is for enough recipients to be interested in a donor, and split the costs of the testing. That's how it was done with previous donors. So far, virtually no one has been interested in testing new donors.

One person once paid the full cost for the testing and I paid them back by charging other recipients a testing fee.


Yeah, absolutely not. For direct access to a donor, one would have to pay an amount that reflects the years of work it took me to acquire that donor. I'm not sure why she would assume that I'd spend years finding donors only to hand them over to her for free.

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I totally understand the work involved in recruiting and screening 1.2 million people, especially as a sick patient who doesn't have unlimited ability to function. On the other hand, you're throwing out lots of people who could potentially help someone. That's why she was hoping that if she were willing to test then you'd welcome the chance that other people could be helped.

So am I. I wasn't offering either of them any money, and I hadn't screened a large number of donors. It seemed that the first one was talked into it by her mother. The second one... a few possibilities -- curiosity of various types. It's possible she wanted something from me, but I wasn't sure.

Firstly, I've mentioned that the videos that are going viral to recruit people are appealing to average people wanting to make some extra money. They do not explain that we are looking for extremely healthy & rare people who may be able to cure diseases.

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Yes, I think that at least part of the key lies here--people who respond to different forms of outreach have different motivations and tend to fall in different segments of the population.

The kind of people I think of as likely to be good donors--they are likely to be warm, happy, cool-headed people who are satisfied enough in their own life to show and spread generosity to others around them. Their solid microbiome means they don't have a deep "hole" within themselves that they are trying to fill, such that they can direct their resources outward in this way. They are not likely to be, for lack of a better word, "graspy" people who are chasing something.

Advertisements that promise quick easy money likely appeal to two kinds of people. One is "lazy", very mediocre, and/or dysfunctional people who aren't doing much with their lives and want to do just "something" that pays decently well and gives them the feeling that they are accomplishing something without them--well--actually accomplishing something.

The other is very busy, "rat-race" people who run around like chickens with their heads cut off and for whom the idea of making a little more money doing something they already have to do sounds like a great idea. Neither of these groups are likely to be good donors, due to the "dysfunctional misfit" aspect of the first group and the high stress, inability-to-calm-down aspect of the second.

In my first post on this forum I mentioned autism families, church groups, and what I called the "mom-osphere"--this is exactly what I was alluding to when I said that's probably our best bet as FMT seekers in terms of getting good donors. You have kids with challenges, they go to schools and are around other kids, the parents are around other parents. Many families of people who don't have challenges can't be bothered spending time in that world of unfortunate families, they want to mingle in circles of other people who have it easy like they do, but a few of them like the challenged kid and "root for" him or her, organize to spread the word, etc. They are people who want to see the world be a better place, and have the inner strength/potential to actually do something about it. I suspect that the best donors will come out of this kind of world rather than some kind of ad promising $500 or even $10,000 for a bowel movement.

Secondly, I think the price increases have absolutely helped to recruit people who previously wouldn't have given it any consideration. I think a further price increase, in addition to the large referral reward, will motivate people to target the ideal demographic, and will cause people in the ideal demographic to give it much more consideration. Currently, as I said, most people in the target demographic do not respond. And most of the people in a good position to recruit top athletes are not interested in the $5k referral reward. And some of the ones who are run into other roadblocks which they don't specify.

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That's what confuses me--this whole thing about the top athletes. Of the four people who helped you, two were not athletes at all and the other two sound from what you say about them like they probably weren't "top" athletes. FL-RS-1997 is the only one, in my understanding, who was even athletic at a professional level, the other athlete was a nursing student who happened also to play sports. You have said that you have actually interviewed many athletes at a decently high level, and they didn't rank highly, and even have listed many top athletes who you DON'T think would be good donors without even having interviewed them--yet somehow this idea still persists with you.

In other words, what do the four people who helped you and top athletes have in common that none of these 1.2 million people had?? Without knowing that, you're chasing something you've never actually found instead of something you've actually had work in the past.

Indeed. There is the possibility that this is a fake, dystopian simulation [1][2]. Perhaps as a punishment.

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A punishment for what??? people discovering and using antibiotics? people eating unhealthy diets?

Something else relevant is that I acquired these two donors by specifically contacting/picking them based on their physical traits. I went to them and asked them to be a donor. Whereas the vast majority of the 1.2 million applicants are not people I chose; they saw a "get $500 for your poop" video and applied. The vast majority of people I pick and contact directly do not respond and do not apply.

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I don't know if it's because of who contacted whom, or more about the aspect of the whole thing that motivated them into doing it.

I do wonder whether some of the difficulty has to do with the kind of pushiness/clinginess many of us get after spending years desperate for treatment. I don't know if you have that, but I definitely do--it's something I consciously try to work on yet it's hard to not show it sometimes. And I wonder whether I'd do much better having someone who doesn't have that acting as an intermediary looking for donors. It's kind of a catch-22, you need health to not come across as desperate yet healthy people seem to be put off by desperate, pushy people.

 

[Michael Harrop]

Then why isn't SD-ES-2015 ahead in line to be tested over the two other donors who you said, in a private communication, were currently in the process of being activated?

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There is no line for activating/testing donors unless recipients specify they're interested in a specific donor. That hasn't happened, so I think you misunderstood whatever that communication said. There are a variety of tests & costs as well. For example, donors in certain countries may be able to get all the tests for free, so in that case, if I'm interested in them I'll have them do that. Other places can do free tests for some basic infectious diseases. I'll send adults I'm interested in to do those, but not kids unless other recipients are interested. SD-ES is a kid, so I didn't send them to do those tests.

the fact of this NOT being what you do would bear stating clearly

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I think it should be pretty apparent from looking at the donor list. Why would I pay to test dozens of top donors that no one's interested in?

Those other sources you mentioned are not comparable. Their focus is not on finding highly effective donors, they have not screened large amounts of donors, and they do not have dozens-to-hundreds of high-quality donors. One is a clinic, another is a stool bank, and all of them are closer to "accept whatever we can get; then screen and offer them".

Maybe gezonde-darmflora.nl advertises to recipients so they have the demand to pay for testing 4 donors. Maybe they can get free testing done in Germany. Note that they only have 4 donors. Compare that to the dozens-to-hundreds of top donors I have. All of whom are likely better than any of their 4.

On the other hand, you're throwing out lots of people who could potentially help someone.

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I'm not throwing out anyone other than obviously-not-qualified people. I detailed in other threads & blogs that I rank donors in tiers, and I have thousands of donors in the top tiers. These aren't "thrown out", they're available; there is simply no demand for them.

The kind of people I think of as likely to be good donors--they are likely to be

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That's a nice thought, and it would be great if that were true. But I've had a ton of applicants that meet that specification, but they appear to be deficient in some area of health & stool quality. And the ideal donors don't seem to meet those specifications.

It probably has something to do with the fact that people who have suffered or are deficient in some way are able to empathize with this condition and our plight. While most "ideal donors" have probably largely been free of major issues.

I suspect that the best donors will come out of this kind of world

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I have no way to reach these groups. Other people in the patient community probably do, but few people have been willing to do anything. And unless I'm misunderstanding, those are groups of people in poor health.

In other words, what do the four people who helped you and top athletes have in common that none of these 1.2 million people had?? Without knowing that, you're chasing something you've never actually found instead of something you've actually had work in the past.

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The first was athletic, but not competing as far as I know. The second was a young athlete, "top" in her sphere but nothing renowned. One donor that was very helpful, I don't know much about them, but I heard they're athletic, and their stool type was good from what I saw. The other is a pro athlete, and the other is a child.

What do they have in common? Stool characteristics, physically fit without visible flaws, athletic, and good questionnaires.

I have outlined The evidence and rationale supporting our stool donor criteria in that blog. I have found it, and it has worked in the past. To clarify & reiterate, I merely think that top athletes are the demographic most likely to have the highest percentage of people who qualify. Mbappe, Haaland, Virgil van Dijk, Mohamed Salah, Giannis Antetokounmpo, etc. There are clearly biological factors that allow these people to perform to a much greater degree than 99.99999% of other people. And there is plenty of evidence that the gut microbiome is one of these important biological factors.

A punishment for what?

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Perhaps I did something bad, and I'm being punished by being made to live through someone's (or a fabricated) experience that demonstrates how bad the thing I did was, so that I learn my lesson. When I think of "what would be the worst punishment for X person", I don't think death. I think this. Having to live through this. This is the worst and most appropriate punishment I can think of. Living through a simulation of my life is exactly what I'd wish on my worst enemy.

I do wonder whether some of the difficulty has to do with the kind of pushiness/clinginess many of us get after spending years desperate for treatment. I don't know if you have that

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Yes, I'm conscious of that. It wasn't a factor at all for the first donor since I didn't communicate with them at all. The second donor was extremely friendly at first. I think I was fairly normal and not pushy or clingy. I tried to be professional despite the possibility that maybe she wanted more from me than that. It's possible she was disappointed that "I only wanted her for her poop". I'm not sure.

Either way, the Human Microbes project negates this factor completely. That may be partly (other is $$$) why it's been more successful at recruiting the caliber of donor that most people cannot on their own.

It's kind of a catch-22, you need health to not come across as desperate yet healthy people seem to be put off by desperate, pushy people.

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Absolutely.

 

[SFBayFMT5]

Out of curiosity, how many clinics/stool banks did you try (with what results) before you decided that they all have awful screening criteria? Or could you not try any because you didn't have C. diff and weren't in the kind of shape to travel?

 

[Michael Harrop]

how many clinics/stool banks did you try

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I don't need to try any of them. I'm basing my statements on public information and other patients' results. Such as:

• https://humanmicrobiome.info/fmt/
• https://humanmicrobiome.info/where-to-get-fmt/
• https://forum.humanmicrobiome.info/forums/fmt-clinics-experiences-reviews/ vs experiences from personal donors https://humanmicrobiome.info/fmt/#experiences
• The links I listed at the top of this blog post https://www.humanmicrobes.org/blog/fda-fmt-regulation

Etc.

I avoid them, and encourage others to do so, for those same reasons.

 

[FallThrough22]

Forgive me for I’m extremely brain inflamed
If the problem lies in lack of demand and thats suspected to partly be in lack of results - shouldn’t prices actually come down to a supply and demand level? Here’s a take from probably some not so fresh eyes.

I initially found Human Microbes through the FMT wiki - where the research that was laid out made it abundantly clear that consistent FMT’s would likely be needed to achieve and sustain a change, in IBS for example. The overall results seen with the couple of activated donors seem to agree with this - that is either there occurs a shorterm change in symptoms or not much of anything (from one batch order of FMT) There seems to be some outliers - its interesting that one outlier in particular had incredible most success utilising biofilm + bacterial clearance measures prior to their FMT.

We know FMT clinics utilise antibiotics prior to their implants, and this seems to be a thing across the board at the clinics. It really seems to suggest some degree of biofilm/bacterial removal is needed prior to an FMT for successful results/engraftment. And even then multiple FMT’s as the literature shows are likely needed

The gut is definitely about eubiosis, and I’ve seen this forum post - I agree. PH for instance is driven low by lactic acid bacteria, SIGA, butyrate etc to maintain harmony - and this does a fantastic job of keeping gram negatives from becoming opportunistic for example. A lot of these bacteria are common players in SI dysbiosis, IBS, brain inflammation from endotoxemia, colitis and others.

However. Without first freeing up some parking spaces - can anyone really say with confidence that an FMT’s bacteria can take up residence well, and the crux point - in such a short number of FMT’s?

I understand that by taking antibiotics you are placing a bet of the FMT replacing bacteria you have lost by doing that - but antibiotics is not what I am suggesting. In my experience, those with clear overgrowths on GI Map + symptoms that align with a high presence of these overgrowths, often respond favourably to lowering these bacteria (I realise the limitations of the GI Map, but it seems its the best we have) So in light of poor stool testing technology, results + confluence will do. And you can lower these bacteria, and their biofilm presence, without the use of antibiotics or harsh herbals:

E.g.
Klebsiella, E.Coli, Citrobacter
Staph, Strep

These are just a few bacteria for example that could be found elevated on a GI map. And here are non-harsh herbals efficacious against them, that a few knowledgable practitioners know about and use frequently
-Black mountain pepperberry, cranberry extract (biofilm inhibition), rosehip+hibiscus,
-Andrographis, pomegranate, echinacea, lysozyme (colostrum, lactoferrin), B.Subtillis,

Often biofilm measures are needed in conjunction - and maybe biofilm presence alone (of bacteria, or fungus - whatever the feature) is a reason why engraftment fails. By getting in the way of that biofilm adhesion, perhaps FMT’s stand a chance to actually have a higher chance to engraft?

Since I’m ADHD and brain inflamed the above items were largely from memory. Thus also from memory, maybe one could use biofilm busters like:
-NAC, bismuth, black seed, proteolytic enzymes, coconut oil, lactoferrin/lysozyme, natural herbs/spices (pomegranate, rosemary, garlic, curcumin etc) There are loads more I’m missing.
-Herbs high in sapponis and tannins (like Antrantil, Yucca)

So in light of zero prep seemingly providing little in the way of results and driving frustration, on all sides - might a proposal for a “safe” prep actually not be such a bad thing? That is, targeted therapies and broad biofilm removal - or at the least biofilm removal. Freeing up parking spaces, as harsh antibiotics from clinics seemingly also fulfil, but in a more sensible manner.

This is just an opinion piece from the results I’ve seen on the the donor results and the frustrations I’m sensing. Maybe I said a whole lot of nothing here and my brain is dead again, maybe I stepped on some feet - I didn’t mean to do do either.

But with the:
A.) Lack of results from recipients (seen on the results tab)
(majority short or single course of FMT + no prep)

B.) Frustration from donors re low demand


This SHOULD certainly suggest something needs to be done differently
If A is driving B, and if A is occurring from high cost + inefficient treatment (from poor engraftment?) then maybe a “safe prep” recommendation is an idea to consider/work around - and since multiple FMT’s are often needed - a consideration of reduced price.

With FMT’s from the donors potentially working better from the implementing of a pre-prep step and multiple courses being financially feasible, prior purchasers may engage in more purchases and see results they didn’t before - therefore driving more purchases. Word would get out, I’m sure.

This was a brain storm, and in my experience when something isn’t working, being open minded and exploring other avenues (with confluence) isn’t such a bad idea

 

[Michael Harrop]

If the problem lies in lack of demand and thats suspected to partly be in lack of results - shouldn’t prices actually come down to a supply and demand level?

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The problem is that the ideal demographic for "highly effective donors" are not signing up, despite the $500 per stool price.

The demand issue is that under the current circumstances, there is a lack of demand for donors that cost $1000 per stool and are safer and more effective than virtually every other source of FMT. The main issue is that there is no outreach or advertising to patients or the medical system, so low-quality donors are being used since there are no consequences for that (except to the patients), nor demand from patients since they're not well-informed on donor quality.

Under a variety of different circumstances, I'm sure demand would be much greater. But I'm just one disabled person left to do everything on my own. I do not have the time, expertise, or funding to remedy the demand issue unless the FDA does something that makes Human Microbes' donors available through official sources of FMT.

Raising prices to $1000 per stool had very little impact on demand. So I don't think the price is the main issue.

We know FMT clinics utilise antibiotics prior to their implants, and this seems to be a thing across the board at the clinics. It really seems to suggest some degree of biofilm/bacterial removal is needed prior to an FMT for successful results/engraftment.

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Clinics doing something is not good evidence that thing is needed, nor that it's an evidence-based intervention.

• https://humanmicrobiome.info/fmt/#before-the-procedure
• https://humanmicrobiome.info/where-to-get-fmt/

And here are non-harsh herbals efficacious against them, that a few knowledgable practitioners know about and use frequently
-Black mountain pepperberry, cranberry extract (biofilm inhibition), rosehip+hibiscus,
-Andrographis, pomegranate, echinacea, lysozyme (colostrum, lactoferrin), B.Subtillis,

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Anyone is welcome to try things like that. There are some other related threads for that:

• Strategies To Increase The Effectiveness Of FMT
• Improve FMT effectiveness with mucus and biofilm dissolver? N-acetyl cysteine (NAC)

Most of your comment seems off-topic for this thread, and I'd encourage you to move those parts to those other threads.

So in light of zero prep seemingly providing little in the way of results and driving frustration

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There are many HM recipients who did zero prep and experienced significant improvements.

maybe a “safe prep” recommendation is an idea to consider/work around

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I'm not going to recommend anything that doesn't have good evidence to support it.

Word would get out, I’m sure.

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This is the one thing I can definitely depend on to NOT happen. There are years of experience to go on. Most people behave selfishly and irrationally and do not spread the word (or participate or help in any way) unless they're being paid or incentivized to do so.

Human Microbes' donors are already the safest and most effective donors that exist anywhere in the world, yet the word does not get out and demand is minimal.

Early on, someone with a severe skin condition completely cured it by using one of our donors. No word was spread to the numerous patient communities filled with thousands of people suffering from severe skin conditions. Instead, a highly disreputable group that heavily advertises their product, obtained most of the demand and caused people to contract new skin conditions from their low-quality donor. None of those people then used HM's donor to try to reverse it. So the "expected rational outcome" that those people use HM's donor to reverse the detriments, and then spread the word that HM's donor is so much better never occurred.

And even if that one person went to all those groups and spread the word, it would have likely not had a major impact. As I mentioned, most people in the patient community are willfully ignorant about the gut microbiome and FMT.

This is the reality I'm dealing with, and have heavily criticized in the past.

in my experience when something isn’t working, being open minded and exploring other avenues (with confluence) isn’t such a bad idea

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I agree. It's essential. It's what I was doing when thinking about what the FDA might do, and is most likely to do. That is how I arrived at this conclusion, since no matter what the FDA does it will likely not fix the main issue regarding the most likely donor candidates not signing up to be stool donors.