@SFBayFMT5 PM'd me with some persistent misconceptions of how HM compares to other providers.
Much of this is covered here:
1. Virtually every other provider was founded with a
monetary goal. They were an existing business that added FMT as a service, or they were founded as a business.
Many of them are dishonest, unethical, and deploy extremely disreputable tactics to get your money from you and protect their source of income.
HM was founded by a patient (me) for the sole purpose of finding a good enough donor to cure myself, since all the other options were terrible and not genuinely attempting to cure people, but rather do just enough to be able to sell a product.
2. Virtually every other provider operates as a
stool bank. This limits their donor pool to people they can find in their local area. Often, they only screen a few dozen people and choose the best option(s) out of them. This generally results in extremely poor donor quality.
HM screened tens of thousands of people before activating a single donor and has now screened over a million people. So you get to choose from the best handful of candidates out of over a million. This includes Olympic gold medalists.
HM is uniquely focused on safety and efficacy.
However,
one benefit of being a stool bank is allowing recipients to
order a little bit from multiple donors without having to pay for shipping for each donor. HM cannot do this since the donors are all over the country/world and ship directly to recipients.
There are some other benefits associated with operating as a stool bank, but I argue below that they are relatively unimportant.
3. Choice. HM finds and ranks donor candidates, and gives you the information you need to make an informed decision. The rest is up to you.
4. Affordability. I have been poor all my life and have been living off the small government disability payout for most of it. None of the other options were affordable. I assumed that many other sick people would be like me -- either living on disability or having already spent a lot of money trying other treatments. So keeping costs low was a primary goal of mine.
Prices started out dirt cheap and only increased when it seemed necessary to attract higher-quality donors.
5. Transparency. None of the other providers systematically & publicly
track and report results. So they're a black box and a very risky dice roll. Many of their patients/customers report spending thousands of dollars only to get worse and develop new conditions from their low-quality donors.
HM aimed to mimic a clinical trial since that is the most scientific approach. Reporting results is mandatory for all recipients, and they are publicly, anonymously, and systematically shared in a spreadsheet:
https://www.humanmicrobes.org/orders
This allows recipients to make fully informed choices about the risk vs reward for any specific donor.
6. Testing. Many other sources over-rely on testing because they don't know what they're doing, don't have the motivation to screen large numbers of candidates to find high-quality donors, and boasting about their testing rigor fools uninformed patients/customers.
The reality is that testing can in no way determine safety or efficacy for FMT
https://humanmicrobiome.info/testing/. It should be seen as merely the cherry on top after a host of other screening is done.
Regardless,
HM does not dictate testing frequency. Recipients can choose to test donors as frequently as they like. I've consistently set up discussion areas where recipients can discuss amongst themselves if they'd like to all chip in to test a new donor or retest an existing one. The vast majority of people do not consider it worth the effort and money. I even set up a private subforum here that recipients could use for this purpose, but it hasn't been used.
The way it worked for most "active" donors is that once there were enough people interested in a certain donor I would split up the cost of testing them, and each recipient would pay $50-100 to get the donor tested.
7. Stool type. I identified stool type as one of the most important factors in determining both safety and efficacy. Despite my publishing it publicly many years ago, every single commercial provider and clinical trial has remained too apathetic to test the hypothesis and factor it into their criteria. Most of their patients/customers are too uninformed to know any better, and such donors are so rare that the providers don't want to put in the effort to find them.
Another patient who has done FMTs from a similar number of donors as me, including members of the Hadza tribe, extensively tested the hypothesis. Our testing confirmed that not only is every stool from the same donor unique but the hypothesis can be applied to
parts of stool as well.
Thus, for "rigorous testing" you'd have to:
a) Homogenize the stool, and thus degrade the best parts with the worst parts.
b) Test multiple parts of each stool, or discard the bad parts but still test every single stool.
If a donor is able to consistently select quality stools this seems to largely negate the need for frequent testing. But this certainly needs to be validated.
both of the donors I used had actually recently failed a test
It was mentioned in another thread that two donors from another provider failed a test. HM's donors have never failed a test, because unlike the vast majority of other donor/FMT sources, I don't use testing as a primary tool. So donors who make it through the prior screening are very unlikely to fail any blood or stool test.
The failed test was "only" antibiotic-resistant genes, but this is still something that can be remedied with a better donor:
https://humanmicrobiome.info/antibiotics/#fmt-to-counter-antibiotic-resistance
8. Procedural aspects. Things like oxygen exposure, freezing damage, stomach acid, etc., were always things I was well-informed & concerned about.
After much testing, it appears that all details other than donor quality are largely insignificant.
So when you point out things that other providers do that HM doesn't, yes, technically it would be an improvement if HM did it, but is it worth the cost for the rather minuscule gain? I say no.
If you're "better" in ways that don't matter, you're not better. You're not even on par. If you choose relatively inconsequential factors to excel at, that makes you inferior.
For example, there is some evidence that you can apply heavy filtration processes to decrease adverse events without a decrease in efficacy:
https://forum.humanmicrobiome.info/threads/washed-microbiota-transplantation-improves-sleep-quality-in-patients-w.480/post-1222
But it doesn't negate donor quality. It simply makes bad donors/stools a little less detrimental. High-quality stools do not seem to need this.
Taymount has been filtering their donor stool for many years, yet there are many horror stories of people getting worse and developing new conditions from their low-quality donors.
Another example is having a lab or freezer to freeze stool for months while awaiting test results. A provider who can do this technically bests HM in this one aspect, but how important is that aspect? It's very costly for sure. Do recipients want to bear the huge costs for something relatively unimportant? And again, it's even less useful if you're not testing each stool. Two companies that do it both have patients reporting horrible results.
A recent provider review said the provider purchases -80c lab freezers for their donors, and this makes them "
truly dedicated in a way that I haven't seen with other providers". If an -80c lab freezer is not necessary and only increases the cost for recipients, that's not something to praise them for. If recipients are going to store the stool in their -20c home freezers, then you just wasted a lot of money for nothing. Most people like to use/store the stool over many months, so keeping it on dry ice is not something they'll be interested in. Not to mention that
my own tests, the scientific evidence, and the reviewer's own experience indicate that it's not needed and might actually be worse.
UMN manufactures FMT in a GMP lab, but
their results are terrible.
Another person said they chose another provider because I don't meet the donors in person.
To me, these things are so comparatively unimportant, especially when I do other things to compensate for them, such as video interviews, signed agreements, test shipments, testing the donor myself, sending them to a doctor, etc.
For these reasons, when a person states or implies that any other provider comes close to HM, or that these inconsequential factors are worth choosing another provider over HM, it makes me think the person is either extremely uninformed, a paid advertiser from another provider, or someone with ulterior motives.
If you disagree, feel free to point out specifics and we can discuss them.
Ultimately,
if any other provider wants to be seriously considered alongside HM they would first have to start publicly & systematically tracking & reporting results, because results are ultimately what matters.
