It's factual information that needs to be said because you can't solve a problem without diagnosing it first. If you have alternative theories for the state of things, or counter arguments against my statements, you're free and encouraged to write them.
My criticisms are backed by a plethora of evidence, and I think they are more than appropriate, especially coming from a disabled patient whose life is being stolen from them by incompetent and apathetic people.
What I mean by tone is this... in a number of your posts, you come across as if you believe the following:
1. The FMTs you have sold are so much superior to FMTs from ANY other provider, that anyone who uses a different provider is wasting his or her time
2. Building off point 1, you have
solved the donor selection problem for FMT once and for all, for all recipients
3. Since your donor criteria don't rely on testing a donor for pathogens more than once, anyone who does so is wasting money that should instead be devoted to recruiting donors from the ~0.0001% (I'm making up a number there--but the point is, it's tiny) of the population who is healthiest.
4. FMT will cure all or at least nearly all human diseases, therefore medical research into most other things is a waste of time and money
5. On top of that, FMT will "cure" things that most people don't even think of as "diseases", like political conflicts, and everyone not being an Olympic class athlete. And going along with this, the vast majority of the population is "ill".
6. Anyone who doesn't believe the above is an idiot.
The reality, as I see it, is:
1. Anyone who follows experience reports from a variety of FMT providers, or who has even personally TRIED FMTs from several providers (like myself), knows that your FMTs have a level of success very similar to that of other providers. Yes, you have a much larger pool of potential donors, and for that reason, it would be significantly more likely for someone to find a compatible donor among them than from a provider with only 1 or 2 donors. However, VERY few of these potential donors have ever been "activated", meaning that
in practice you have the same number or even fewer donors actively donating than competing providers.
2. You have a significant amount of valuable experience on which donors work FOR YOU, as well as a decently sized collection of statistics on who else benefits from your donors. However, you have nowhere NEAR enough data to conclude that you could, with certainty, pick a donor for someone else that will work. I recently got worse from a donor that the provider has said had not previously made anyone else worse, and who greatly helped someone I personally communicated with--showing that there is NO perfect donor even if that person has helped many people in the past. And, even if you know which donors work for you, you haven't solved the problem of holding onto them so they keep donating--except for maybe if you paid them millions of dollars--but NO medical system can bear the cost of an intervention that sells for a million dollars for a course of treatment, especially when my OpenBiome donor, who worked extremely well and better than either of the other providers I've used (including Human Microbes), was paid a tiny fraction of that.
3. Testing for pathogens isn't about making sure someone will cure a recipient--it's about screening out KNOWN reasons a FMT might make someone dramatically WORSE. And people with a decent microbiome aren't super rare, most of us get our microbiome as babies from people who are NOT in the top 0.0001% of the population in anything.
4. I agree that a great number of cases of "chronic mystery disease" will respond dramatically to FMT. In other words, things along the lines of ME/CFS, fibromyalgia, PANS, post-Lyme syndrome, etc. In other words, cases where someone goes from being well to feeling "not like himself/herself", in a multisystem way that eludes medical understanding. The same goes for many GI conditions like IBS, IBD, gastric reflux, gallstones, etc., as well as many metabolic disorders. However, I find it very unlikely that FMT will cure late stage cancer, and it certainly won't cause a missing limb to regrow or fix a genetic defect like muscular dystrophy.
5. Most people are well enough to work a decent job and take care of themselves. That doesn't qualify as "ill", and doesn't mean they are horrible donors OR that they need FMT.
6. Most people who don't believe the above are not ready to jump to such conclusions because A) they haven't been sick enough to need a FMT, or B) they are not willing to take the gamble that a donor (including one of yours) might make them worse.
I get that you have valuable information to contribute to the discussion of how to improve FMT. And it's awful that people put roadblocks in your way rather than seeking to use this information to help people. I totally get that the way things are, you can't even DO the experiments that would determine to what degree you're on the right track. But to counter-react by claiming that you, and only you, have the answer to all of medicine, or even that
you are the only one who truly even cares about trying to help people, really hurts your cause. That's the kind of thing that quacks say. And I've seen writings of yours where you don't claim this sort of stuff--where you acknowledge that we're still learning about FMT and that you are just doing your part to help move it forward--but you have to make sure that this is the first impression you make to people like the members of Congress in charge of medical policy.
