First results from our 1 in 23,000 stool donor (2022, HumanMicrobes.org) Blog
- Thread starter Michael Harrop
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This is totally it. Someone I know who is looking for a donor posted on a forum for residents of a town near her, asking for donors, and some people were apparently downright RUDE to her. I just saw one that hinted sideways that he was questioning whether she might be some kind of pervert, but didn't outright make accusations. However she told me that there was someone much ruder who had responded, who had since deleted his or her comment.
Many of us who are looking for donors have mental health challenges that already can make us seem weird, creepy, or otherwise offputting even when we're NOT doing something like looking for a donor for bodily excretions or fluids, and we're desperate for help which doesn't help matters. What we could really use are people to form a "bridge" between us and donors, who know people socially and can put them at ease, that we could tell what we're looking for and they could do the initial outreach.
Michael has put in TONS of hours of work to interview thousands of people--however he hasn't found a truly effective donor in years. I suspect there is something about how he is putting things out there that is turning off normal, healthy people. And I suspect that something is also putting off senators in Washington. Quite possibly not exactly the SAME thing; with donors it might be things like asking for stool pictures and posting them online with commentary, whereas with politicians it might be claims about "curing all chronic disease"--and in both cases the ick factor of the method itself plays a role.
This is a very good point. This is what Gezonde Darmflora and Microbioma are doing that HM didn't do. Yes, they DID do stool testing of the donors themselves, and the results of this were posted online so nobody had to merely take Michael's word on it, though it's unclear how often this was done. A casual reader of the site would be forgiven in thinking this was only done ONCE per donor, if in fact it was done more often (the strictest sellers do this monthly--plus retaining aliquots of actual shipment-ready donations for quality control). The samples that were divided up into capsules/enemas and actually sent to customers were shipped directly from donors in the mail--Michael/HM never touched them, so retaining a small amount for quality control/tracing would have been impossible.
Michael claims that screening donors by questionnaire and stool type verification by picture makes a lot of this unnecessary, but there is literally no evidence that it does. And I say this as someone who suspects I could get very good at picking good donors in terms of efficacy by their personality/"energy" in combination with their health history, after trying a number of donors, and suspect I would be even better if I also could consider things like the odor of the stool itself. But this all concerns efficacy only--in other words who has the type of microbes I need. It doesn't say anything about whether they happen to be sick with something at the moment--THAT is the purpose of lab testing, NOT to determine who has the microbes that who needs (scientists agree that microbiome science is not far enough along for that).
For those of us who don't have access to a lab to run tests as often as we'd like, many of us try donors with less frequent testing if they look promising enough, rather than forgo using that donor. However, we must be careful not to try and justify this to ourselves or others by pretending that more frequent lab testing is useless and unnecessary. If and when people with more resources join a project, they will understandably ask "where is the testing", and if they are truly "behind" the project, will devote a considerable investment to making this possible. It won't be something we need to argue against because nobody will be dissuaded from helping by the need to invest in this. There is no point in responding to providers with labs using low quality donors by going to the opposite extreme and acting like labs are unnecessary with good quality donors.
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Michael Harrop
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Definitely. But this is the problem that Human Microbes solves, since we no longer have to interact with potential donors. Human Microbes depersonalizes things.
I have 7 donors ranked above the top active donors. So it's possible that I have found one or more but they haven't been tested yet.
You simply need to read the blogs for the answer to this.
Also, implying that "normal healthy people" aren't applying is completely wrong. I have thousands of "normal healthy people", much better than the donors at other FMT sources around the world.
Again, the answer is already in another thread.
This is not true, and it's been explained to you multiple times. So you're either trolling or have a severe learning disability that you're unable to keep in mind and adjust your behavior accordingly.
You can argue the evidence is not strong, and I would agree that it needs to be confirmed in an ample-sized study, but "literally no evidence" is a lie.
Everything is a cost-benefit balance. People are going to weigh things differently depending on their personal knowledge and experience, which is why Human Microbes largely leaves it up to recipients.
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How are you so sure that this is not simply a function of who responds to you, rather than how the majority of people feel?
In my experience, people (at least neurotypical ones) who are grossed out or creeped out by ideas react to this by ignoring the people who make them feel that way, without explanation. There are a select few who actually SAY openly that they're grossed/creeped out, a couple ranting and/or insulting very loudly, but this isn't the norm. That's at least if they are in a position to ignore those things/people/ideas, rather than forced to confront them (e.g. if someone who weirds them out isn't in their home, at work, touching them or their stuff, etc.).
The hierarchy of responses seems to be:
1) Ignore/"ghost"--kind of the lowest "DEF CON level". This avoids even having to hold onto the weirded-out feeling long enough to really act on it.
2) If they CAN'T totally ignore it, then escalate to laughing/joking about it. This is a nervous, sarcastic kind of joking that isn't like the relaxed humorous mood of someone having a good time.
3) If they really can't ignore it, lash out in indignation, or else try to get some kind of authority figure to step in and restore a perceived "order" without the weirding-out thing being present.
The one time when I asked a group owner (a group NOT FMT-related) whether I could post something about looking for a donor, I DIDN'T get a response saying "no you can't", I just got NO response. The same happened to someone I know who is looking for a donor. The group owner said nothing when asked and banned her from the group without giving justification.
So if there were a survey about FMT, I'd suspect that many of the most grossed-out wouldn't even hand in the survey. Most of the others might make up reasons why they wouldn't consider donating and/or being a recipient that sidestep the real issue for them. The ones who would openly say "this idea is gross!" are quite few.
And to be clear, there are a sizeable number of people who are NOT grossed or creeped out, who genuinely want to help and are forthcoming about this. Unfortunately, these people are not always good donors for other reasons... but they're out there. It's just that there's likely a sizeable majority, including many of the people in "social gatekeeping positions", who find the idea "untouchable".
Hi @NameHere,
It seems like you have identified a lot of the same issues I have regarding (a lot of) people being weirded out by the idea of FMT and very closed off to it. The question is what to DO about it.
I know some autism mom/parent groups--I've always thought that if it takes off somewhere it would be there. There are people in that community who try some really strange things! On the other hand, the parents who organize such groups are often not going to be the ones who are receptive, and are unwilling to pass the info onto the other group members--so one would need to reach the groups as a whole.
I did write to one of the congresspeople who is involved in health policy, months ago, and never heard back. I'm thinking of writing my local representative from California also (although he has no role on the health subcommittee). I'm wondering though if rather than go directly to Congress if it would be better to form some sort of nonprofit first. I'm on the spectrum myself so not great at making interpersonal connections, so I've long hoped for someone who IS "on the same wavelength" as "normal" people to act as an ally.
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Michael Harrop
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@NameHere brought this up while mentioning the people I've spent the past 10 years trying to educate and spur to action (the patient community), as well as my efforts in Congress.
In Congress, I've noticed zero adverse reactions to FMT. For the patient community, and general public, that is where the surveys come in. Eg: despite low knowledge of FMT, 72% of people would consider FMT for C. diff. You're welcome to look through their study methods. But you could argue that 28% of people preferring to die from C. diff rather than do FMT is a large portion.
When referencing donor recruitment, yes, of course the ick factor is an issue for some portion of that population. Human Microbes tries to overcome this with the anonymous and depersonalized nature, as well as the monetary incentive. If you have other suggestions, feel free to share them.
As you concurred, I think it also largely depends on the person the information is coming from, which is why in my experience report, I acknowledged my inherent privileges, and how people without them would have an even harder time. All the more reason for those people to support my efforts, and all the more irrational and self-destructive that they do not.
I wrote about this in the OP blog, and the others. But I don't think the ick factor is a main issue, or even worth talking about at this point. The main issues are discussed in the blogs.
Regarding the group owner experience, I think those are mostly unintelligent, unhealthy, poorly functioning people who react like that. It could have been a combination of "poop + asking to advertise".
But in general, this is one reason I've thought there needs to be a major public campaign to educate and recruit entire student bodies of major universities to apply to be stool donors.
There's a huge knowledge deficit that needs to be overcome, and I just experienced that yesterday. Most of the general populace has a poor understanding of human health & biology, and the gut microbiome.
This is why it was great that South Park covered it, but a year or two later, I mentioned that the South Park episode didn't seem to have an impact on donor recruitment.
This is what most of the groups lobbying Congress seem to do, but it's not a necessity, and you need some draw to get people to join the groups, travel to Congress, etc. Most of those groups pose as advocacy orgs that recruit people impacted by the disease and say "X disease is bad, help us lobby Congress for more funding for X disease research".
All these issues being discussed are reasons why I started Human Microbes. The primary problem is that people are generally unwilling to help. I've noticed a few of those unwilling people bizarrely try to repeat every step I've taken over the past 10 years, and experience the exact same phenomenon.
Ummm... wasn't the whole thread (the one you removed these posts from) about how every Congressperson you stop in the hallway and ask about FMT, or nearly every one who you try to set up an actual one-on-one meeting with to discuss FMT, ignores you and goes right back to whatever they were doing before?
It's possible that they are willing to have federal money go to doctors who are doing research into FMT, but that's a situation where they can distance themselves from the issue because "the doctors are handling it, they know what they're doing and good thing it's them and not us". That's quite different--they're deferring to some external authority who puts their stamp on it so it's not the Congresspeople themselves going around trying to convince people to swallow other people's stool or to give their stool to other people to swallow. It's not their metaphorical hands getting the metaphorical scent of feces on them.
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Michael Harrop
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This isn't what happens, nor what I've described. And I've relayed other very believable reasons they explicitly gave me for their behavior. Ignoring those reasons in favor of saying "they're grossed out by FMT", functions as a red herring fallacy.
This would never happen, and no one is asking them to do that.