Popularity and acceptance of FMT. Who is to blame for why FMT will never be available? Ignorance, laziness, and apathy of the general public? How to motivate people to take action? Other

[Michael Harrop]

I'd assume, that 10-15 years down the line, when everyone is sick and suffering from chronic health issues, mass population will try FMT and FMT will get popularity and acceptance.

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This is completely erroneous. Chronic disease and poor health already afflict the vast majority of the population. They can't try FMT because safe and effective donors are not available, and will never be because people are too ignorant and lazy to do anything to make them so.

Not right now though because the rich, successful and socially adjusted people are living their life fully. They are too ignorant and un-empathetic to understand FMT and help out people like us who are looking to do FMT.

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They're not living their lives fully. Many of them are as unhealthy as anyone else. Nearly every week, I see the news cover a wealthy celebrity dying of a condition curable with FMT. They're as ignorant as lazy as anyone else.

 

[FMTdriver]

This is completely erroneous. Chronic disease and poor health already afflict the vast majority of the population. They can't try FMT because safe and effective donors are not available, and will never be because people are too ignorant and lazy to do anything to make them so

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This is not what I meant. And there is no need for your hostile and harsh tone for that Mr. Harrop.

Yes, you are right that nearly everyone (especially those living in cities) are suffering from chronic health issues or are on the path of it in upcoming years. Hardly anyone is healthy and has a perfect microbiome.

However, these people are still getting by in their lives. They are participating in society, have good social life and career. Someone who has diabetes, heart issues or any other metabolic/Chronic disease.won't have urgency of motivation to look into FMT and a FMT donor.

Why ? Because, as long as their career, money, social life is not getting affected much and are going smooth, they wouldn't bother. I confidently say this because this is what I see around me and this is what's the norm in most places if not all.

And I agree that they are lazy and ignorant. Even stupid. But I also say, that it will take more years for FMT acceptance and popularity among masses.

Until and Unless, an urgency arrives among these stupid ignorant and lazy masses, and they become bedridden and their lifestyle deteriorates, they won't understand or try FMT easily. And this will take some years to happen.

Same answer for rich, successful and socially adjusted people.

They are getting by in their lives. They are not bedridden and lonely, and living in survival mode like you and me. They just simply won't get it.

 

[Michael Harrop]

That was not a hostile or harsh tone.

Why ? Because, as long as their career, money, social life is not getting affected much and are going smooth, they wouldn't bother.

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There are plenty of people who are severely impacted in those areas of life by their health. They still do nothing.

I noted in other threads that I've contacted such groups (IE: CFS - chronic fatigue syndrome) and even went to an event in DC and spoke to them, and they cared as little as anyone. So the notion that people are all of a sudden going to get serious once they can't work or play is nonsense.

But I also say, that it will take more years for FMT acceptance and popularity among masses.

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This is never going to happen because it's a catch-22. You would need highly effective & safe donors to be available so that people see the miraculous impacts. And that will never happen because safe & effective donors will never be available without massive public demand.

Same answer for rich, successful and socially adjusted people.

They are getting by in their lives. They are not bedridden and lonely, and living in survival mode like you and me.

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This is wrong, and ignores what I said in my previous comment.

People always find someone else to blame to excuse their own inaction. What are YOU doing? The answer for nearly everyone is "nothing". The vast majority of people are to blame, including you.

If anything, you're even more to blame because you're well-informed on the potential of FMT, yet you're still doing nothing.

There is a related discussion in:
What is the public perception of FMT? How much does it matter? Has it been blocking progress?

 

[SFBayFMT5]

They are getting by in their lives. They are not bedridden and lonely, and living in survival mode like you and me. They just simply won't get it.

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I think this is exactly it. And even people who are possibly worse in terms of objective sickness (if you can even measure that) are often sick in more visible and empathizable, "socially acceptable" ways, and see less of a gap between their current ability level and where they could be at if they got the right treatment.

In many Lyme disease groups, there are many people who are quite sick, but are married, have kids, etc. Their world is centered around dealing with the stresses of their very real and otherwise integrated lives. Especially many of the women in those groups are like this. Contrast that with a rather different picture, of a young male who never managed to get settled in life, who doesn't have obvious disabilities like a limp or obesity or something like that, but is too irritable/inattentive/volatile to hold down a job, has maybe picked up some addictions, etc. The latter is in many ways more "in need of a miracle", but much more likely to be passed by and overlooked when the larger society is choosing how to allocate resources for finding cures.

People who are sick, but not on the fringes, are in my experience much less likely to endorse radical new treatments that are themselves not socially acceptable. They ARE likely to endorse treatments that come from outside accepted science, but these are things like chiropractors, "energy healing", applied kinesiology, etc. They seem to feel they have too much to lose by asking other people to give them bodily fluids and possibly risk being branded a weirdo rather than assuming an identity as a stressed out, overburdened sufferer.

Michael once mentioned that overweight and "visibly unhealthy" people seemed less likely to respond to his sign and/or spiel than people who looked fit and healthy. The way I explain that is that the second group of people imagined themselves as their best potential selves and therefore their egos/self-assessments saw more of a "win" in "rocking the boat". Whereas those who are visibly unhealthy see that unhealth as "just part of them", and they feel less resistance in embracing that to some degree.

 

[ButterflyShoeMill42]

Where are these healthy donors in America? Americans eat crap and even the best intentions of a parent cannot stop kids eating crap at friends' houses or parties or school lunches. I tried my hardest to feed my kids well 20 to 30 years ago when they were small, and once they experienced UPC food elsewhere, it was over. When I was looking for a donor, I couldn't trust anyone that I knew that they were healthy without spending tons on tests. Which is why I searched outside the US. So even if FMT were FDA approved, it would be hard to find donors in America. Maybe Amish or Mennonite communities. As someone who had Lyme, Bartonella, RMSF and a husband dying of cancer, life was not easy, but my FMT gave me my life back.

 

[Aim for NaN]

An idea rejected today can be accepted after 3 to 4 generations have passed. That is normally how long it takes for society as a whole to experience some kind of reset. Of course, we won't be able to see it, since we'll be dead by then, but the usefulness of ignorance, incompetence and laziness is such that by the time the next interval of the fourth generation comes along, all presuppositions, ideals, biases, etc, would likely either have no longer been remembered or would have been rejected because idiots believed themselves to be geniuses. In the same way that ignorance guides society's apathy, that same ignorance has been used to create entire movements. One stranger and a lot of hype goes a long way. Someone will figure out how to go viral.

 

[Michael Harrop]

Where are these healthy donors in America?

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There are plenty of healthy people in the US. Both ideal donors I found were in the US.

I couldn't trust anyone that I knew that they were healthy without spending tons on tests

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That is due to your own ignorance and poor judgment. Stool & blood tests are not a valid method of determining donor safety or efficacy, and that's been discussed & documented extensively on this forum and in the wiki. The information was available, but you didn't seek it out, review it, and take it into account, even though you came across it prior to your FMTs.

That's another example of the problems discussed in this thread. Even among people who are knowledgeable enough and motivated enough to pursue FMT, a majority of them exhibit ignorance and laziness, and opt to use low-quality donors and put no effort into making safe & effective donors available.

Maybe Amish or Mennonite communities

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Unlikely. This has been discussed in other threads. You don't seem to be learning from the information here.

Someone will figure out how to go viral.

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You could argue that South Park made it go viral, and that had very little impact. Few people have the motivation to make FMT go viral because they can't make money off of it. They'd also likely need a super-donor. Hoping that some random person will make FMT go viral and that will solve all of our problems seems like a fantasy.

 

[Aim for NaN]

So even if FMT were FDA approved, it would be hard to find donors in America.

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Yet, even you would realize that "hard to find" is not equivalent to "impossible."

When aiming to produce a product for general consumption, you're either fulfilling an existing demand or you're creating demand. "What do people want?" They want everything. When people want everything, that means they need to be hooked in order for them to even notice your product. These companies are subject to the same ignorant, incompetent and lazy audiences as we are, yet they get people to buy their products anyway.

People walk into the doctor's office and their "numbers" return "normal" and "unremarkable" all the time. Therefrom, the doctor claims their health is perfect. I'm sure plenty of these people went on to die of heart disease and other ticking time-bombs. Tests are for ruling stuff out, not for asserting health. Many doctors have yet to come to this realization.

It is not difficult to simply look at a person and tell whether they'd be a potential stool donor. From then on you would entertain deeper forms of investigation. The issue is that the longer we wait, the less likely there'll be. Even Japan, which is rated as one of the top countries in having a good microbiome, have been slowly implementing Western cultural practices. Even so, I would still argue that there will always be someone, somewhere, that has a fairly good understanding of health and nutrition as a result of their own experiments that does not entertain poor lifestyles, which would be suitable as a stool donor. Even if they happen to be on the same level as hippies.

However, this is not to say that it is impossible to bring someone with fair health into good health, that they might have a desirable microbiome. Technically speaking, just finding even one ideal donor would be sufficient to improve everyone else. In the end, if no one does anything, then "hard to find" would be no different than "impossible."

You could argue that South Park made it go viral, and that had very little impact. Few people have the motivation to make FMT go viral because they can't make money off of it. They'd also likely need a super-donor. Hoping that some random person will make FMT go viral and that will solve all of our problems seems like a fantasy.

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Considering your own efforts, it is strange that you would echo the claim that you can't make money off of FMTs. Even if the world we seek is nothing but a fantasy, I'm sure that wouldn't stop you from chasing after it anyway.

 

[SFBayFMT5]

When aiming to produce a product for general consumption, you're either fulfilling an existing demand or you're creating demand. "What do people want?" They want everything. When people want everything, that means they need to be hooked in order for them to even notice your product. These companies are subject to the same ignorant, incompetent and lazy audiences as we are, yet they get people to buy their products anyway.

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You don't specify who "these companies" are, but I'm guessing you mean just general companies that are successful doing business in the US.

I don't think you can compare FMT marketing to selling of something like computer games, AI, "life hack" gadgets, vacation rentals, or anything like that, not even (other) supplements. In trying to sell FMT, you are effectively selling other people's bodies as a commodity--not directly, but you're selling something derived from those bodies where the body it came from is the very reason it's useful at all. In the US in particular, there is something inherent about human bodies being available as a commodity that squicks people out and gives the product a bad reputation.

Even the companies selling colostrum or milk oligosaccharides from human donors are relying on the fact that they are essentially milk, which many if not most people regularly drink, even if from a cow, and people feed to their babies. I guarantee you that if stool tasted like milk, and it were common to feed it to babies, there would be a thriving stool market because people would demand it.

So it's not so much about making the marketing slick and sexy so that people notice and are "hooked", the issue is what will you market at all? You can't show the product itself, because what would you show, a beautifully sculpted turd? So then would you show pictures of gorgeous looking donors smiling and telling you how happy they are to provide the product? Well then the bodies are openly the product, and it comes across as if you're advertising an Onlyfans type site if you're not careful. Those companies do good business I'm sure, but do you want that kind of reputation if you're promoting the thing that will hopefully fix the health of the human race? And I'm sure the FDA would take even much less kindly to that than a site like Human Microbes that does its best to look matter-of-fact.

So there's really no mass marketing model for human-body-derived goods that isn't sleazy. That's part of the problem.

 

[Michael Harrop]

Considering your own efforts, it is strange that you would echo the claim that you can't make money off of FMTs

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I'm making $0 off FMT. I illegally made minimum wage off FMT for 2 years.

Even if the world we seek is nothing but a fantasy, I'm sure that wouldn't stop you from chasing after it anyway.

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More nonsense. There are real solutions; you're proposing fantastical notions instead.

 

[Aim for NaN]

Nothing but arguments from incredulity. What was accomplished first: FMTs reaching the home or patients or convincing the government? Did the former happen for free? Stop being silly.

 

[SFBayFMT5]

What was accomplished first: FMTs reaching the home or patients or convincing the government?

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As far as I know, what first happened (at least in modern times) is doctors trying FMT for their patients in what were effectively informal clinical trials, when those patients had something like C. diff where there was no known cure that worked for the patients. At the time, since so few people were actually doing it, the FDA saw no need to create formal rules about the procedure. Then, once it was noted that the transplants worked and they therefore became more common, the FDA drafted a set of rules that were eventually made legally binding. This push for formal regulation was helped along by a small number of relatively high profile FMT-related severe illnesses and deaths.

Once word was out that FMT was helping, then patient groups started discussing it and people started doing transplants on their own, from family members or friends. Then businesses sprung up to help the people who couldn't find donors this way.

Did the former happen for free? Stop being silly.

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None of it was free, unless people used family members and didn't test them.

 

[IsthmusSIBO]

If I had help instead of being hindered every step of the way, it would be possible to end the chronic disease crisis within a few years. I won't say more than that, for previously stated reasons.

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The FDA nor the research system will change, so its still up to the similar-minded individuals who see the potential of FMT to help those who want the help. For now, you can’t help those who think they don’t need FMT. So it is expected you will not have major support.

But if I am being completely honest with you, it seems like you are punishing the few people like me for the actions of people who aren’t as open-minded as you and I.

I still remember my first post, and all you could say is that I am responsible for this extremely complex problem just because I acknowledged the massive obstacles I have to spread the word in my country.

Hell, I can’t even get to do it in my own household, my parents don’t even want to consider FMT because I am not “bad enough”, we don’t know a viable donor and it seems exaggerated. And as you could guess, I am dependent on them economically. I have lost friends because they think I am insane for my views, which ARE informed. Even you have to admit I am more informed than many on this simply because I have read this forum and it’s wiki.

Do you need others to completely devote their life to the cause and lose the approval of their friends and family for you to take their commitment to making FMT available seriously? Because it seems like that.

You often use the argument that you managed to operate a FMT company alone as a disabled person to invalidate the systemic barriers that most people have to implement FMT policy for multiple illnesses.

And you have accomplished a lot in the operative side, there is no argument against that. But your biggest obstacle right now is not about what an individual can accomplish anymore, but fighting a literal abstract but real concept: ignorance and greed/power/control from the elite.

I often feel you don’t truly understand how many things outside of the scope of advocacy need to change for institutions and researchers to actually take FMT seriously. You said before “never attribute to malice what you can attribute to incompetence”, but everything that has happened actively says that it is malice and greed. The last IBS trial should tell you that already. And the masses won’t listen to the people like us who are seen as fringe maniacs.

You might think that I am misinterpreting what you are asking of others, but that isn’t the case. We are so few and so many have so many different circumstances, that we can’t afford to abandon so many things like you did with no damn leverage on institutions.

And it is not fair that you had to abandon your life either. It wasn’t anybody’s fault that you got CFS (other than possibly your parents, but Idk).

But now that you are rebuilding your health, you want to deny the ability to do the same to the few who are willing to listen to you, because of the many who can’t or won’t.

So, in my opinion, you should give access to your donors to those who are willing to listen to you in this forum.

——-

But if that isn’t something you agree with at all, what will you actually let us help you with, that is actually feasible?

I don’t have contacts in the FDA, I don’t know the researchers from the last trial. I am not a microbiologist and I have as much leverage as you do on research and policy: 0. Because I am an architecture student, not a microbiologist. And any doctor I open my mouth with already dismisses me.

I already did all the other recommendations you outlined on that thread. I tell people about FMT and try my best to get new members in this forum every single day, in Reddit and irl.

And if what is more feasible is money, I can’t even give you some until I start working, and that is only if I don’t deteriorate more (and if my country doesn’t crumble, today we had an the most powerful earthquake in our history and we are lucky it wasn’t enough to break the capital). But only time will tell.

I may be rambling, but what I am trying to say is, that I am open to help you, and if you need reassurance that I don’t want to fuck you over or hinder you like people in the past, then all you need to remember is that I am an intelligent patient like you, who has his life at stake too.

 

[Michael Harrop]

Some of what you said is not accurate, and you know better.

So, in my opinion, you should give access to your donors to those who are willing to listen to you in this forum.

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No one gets access until it becomes legal or they have millions of dollars https://www.humanmicrobes.org/blog/is-a-million-dollars-enough-for-your-poop.

Being willing to listen to me is not doing me a favor. The extensive knowledge I freely shared is a favor. So you owe me for the knowledge, and you would owe me for the donor.

what will you actually let us help you with

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That's rich. I haven't prevented anyone from helping. It's completely up to you. I did my part. The ball's in your court now. If you're too limited on your own, and other people won't help you, that's their fault, not mine. Take it up with them.

 

[IsthmusSIBO]

Some of what you said is not accurate, and you know better.

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Yeah. I see now. Apparently, I never read the million dollar stool blog. Now I understand your real current stance.

That's rich. I haven't prevented anyone from helping. It's completely up to you. I did my part. The ball's in your court now. If you're too limited on your own, and other people won't help you, that's their fault, not mine. Take it up with them.

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To be honest, and you can tell, I am just frustrated at the entire situation and I needed to vent it out. Even if it wasn’t logical or mature.

I know that most things that led to this aren’t your fault.

But, the thought of knowing that you are gatekeeping donors because everything that has happened before I even knew about FMT, and that my only way to access them is to have insane amounts of money or change institutions (that not even people with more power and money than me can, whether due to human conflict or an actual united cabal wanting to make everyone miserable) boils my blood.

Anyhow, I may lack some maturity, but I have enough of it to understand that antagonizing you is not going to make it more likely for me or anybody else to get FMT from you.

So let me understand right now. You say you haven’t prevented anyone from helping. Yet, you have been clear that no one is really useful to HM unless they are a high-quality donor, an investor worth millions of dollars or they can make FMT legal in the US.

But again, if we don’t have the ability to provide any of these things, but have the desire to help more hands on, is there really nothing we can do?

So, if I offer you my time and service for free to say, promote HM in social media, that is not useful at all anymore because of the legality issues?

Or if I double my efforts to track down eligible candidates for HM, doubling the manpower. I don’t know. I may have a contact that can help arrange meetings with Olympic athletes directly in my country, but I haven’t tried it yet because of the feedback I have had from my circle. And we are not intimate friends.

P.S. maybe you should try sharing the million dollar stool blog too when inviting people from Reddit instead of just the FDA one.

 

[Michael Harrop]

knowing that you are gatekeeping donors

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Stop making statements that you know are false.

But again, if we don’t have the ability to provide any of these things, but have the desire to help more hands on, is there really nothing we can do?

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This is the situation. It's up to you. It's that simple.

P.S. maybe you should try sharing the million dollar stool blog too when inviting people from Reddit instead of just the FDA one.

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The FDA summary was written deliberately to condense and summarize a huge amount of information. It references everything else people should read. There are no intelligent people left on reddit.

 

[IsthmusSIBO]

Stop making statements that you know are false.

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Just feels like this, not saying it’s the objective truth. That’s why I said it isn’t your fault before. Again, apologies for my frustration.

There are no intelligent people left on reddit.

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Why do you keep modding r/HumanMicrobiome in this case?

If the idea is to recruit as many people as possible to mail the FDA, why discriminate on the assumption that every social media user is useless?

 

[Michael Harrop]

why discriminate on the assumption that every social media user is useless?

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I've written extensively, that that has been my experience. You're free to try it anyway.

 

[Asclepius]

No one gets access until it becomes legal or they have millions of dollars https://www.humanmicrobes.org/blog/is-a-million-dollars-enough-for-your-poop.

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This is the situation. It's up to you. It's that simple.

The FDA summary was written deliberately to condense and summarize a huge amount of information. It references everything else people should read. There are no intelligent people left on reddit.

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I thought you had suspended all operations due to legal concerns from the FDA, but the million dollar blog makes it sound like it's still up and running but only for multimillionaires. What's the current status of HumanMicrobes?

I was considering making a thread for discussing some workarounds to not get bothered by the FDA, but maybe you've already sorted that out?

 

[Michael Harrop]

I was considering making a thread for discussing some workarounds to not get bothered by the FDA, but maybe you've already sorted that out?

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Feel free. The status is that unless other people want to start putting in significant effort to solve the situation, I'm not going to bother with anyone who's not offering large amounts of money. All problems can be solved with enough money, and most other options aren't worth the effort for me.

So it really depends on what the proposal is. Keep in mind that I was making minimum wage with HMorg, while putting in a ton of time & effort. If the proposal is for me to go back to doing that, or worse, the answer is no.

Also keep in mind that international dry ice shipping is difficult and expensive, and the shipping companies don't want to bother with you unless you're shipping frequently.

 

[SFBayFMT5]

I'm not.

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A while back you were talking about wanting to get clinical trials of your donors vs. other donors. Though presumably given the fact that you aren't a doctor, you were talking about having other people do the trials, but that doesn't mean funding is unnecessary, rather it means that you'd be requesting funding and labor rather than just funding.

There's nothing inherently wrong with that if you have a good idea and can justify it, but the high expense of clinical research means that whatever agency would take this on would have to devote a considerable amount of resources to this. You seem to acknowledge this yourself when you speak of people giving you a million dollars.

2. Why should I? What benefit is there for me in doing that?

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Getting your ideas on a more solid footing where you have more leverage to ask for favors from others to help you in your quest (to cure the world through gut microbes). You seem to imagine that people will beat a path to your door to give you large sums of money for your knowledge. However, you need to make a plausible case for having knowledge that is worth this kind of investment. In other words, make a case that investment will be returned with something (cures, scientific knowledge gained, etc.).

A. If you had public data showing an improving trend for your donor results over time, this would support the idea that you have learned meaningful info during the process of being involved with FMT and that given enough resources you might find a cure. However, to my knowledge you don't have this. If anything, when you add your own personal data (pre-HM), it seems as though success rate might have declined over time.
B. Even not having A., you could counter that by arguing that stool consistency and/or color are important variables and that they declined over time as well, explaining why results stagnated despite you learning valuable insights. However, you would actually need organized data (graphs, tables, etc.) of stool type vs. results, as well as a way for others, given actual stool pictures from the donors that you would provide, to verify for themselves the decline in stool type.
C. Barring A. and B., you could claim that you identified a new important variable or a new source of high-quality donors only after HM shut down, that then enabled your results to start improving again. However, you'd need to explain what this new variable or source was and what you did to find it. Disclosing this variable might allow someone to "scoop" your idea, BUT at the same time having it publicly acknowledged as coming from you also means you could argue successfully for credit if it were. You might also need to show some evidence that the new donors were more effective (such as test results from your own doctor showing evidence of a cure), given that there is no recipient data for the new donors.
D. In fact, that last bit (test results from your doctor showing a cure) might be the only way you can make this at all convincing without any of the other data.

But as it is, it seems you are trying to argue that you have learned how to solve the donor quality problem when:
--your recipient data didn't show an improvement over time, which you attempt to explain by
--a stool quality score that only you can calculate in your own head
--and that you don't even have recorded alongside the public results data for others to view
and now you are arguing that your donors HAVE drastically improved
--yet you don't have any public data showing this
--when you were effectively "crying wolf" by claiming you had solved donor quality even back when the success rates from your donors were NOT steadily increasing.

This is WAY too many holes, even if someone from the FDA or a major medical school agreed to devote his or her personal time for free to listen to you present why your idea is a breakthrough. And this is all on top of the hurdle you have to jump over due to not being a medical professional.

Note that I am NOT saying that your FMT product didn't help people, and I agree that you almost certainly learned some valuable information about how to do and not do FMT through the course of treating yourself and getting feedback from other recipients. However, what I don't see is the organization of data into a form that allows you to show this. Without this, you don't have the "leverage" to get others to invest in this project.

 

[Michael Harrop]

A while back you were talking about ...

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The situation has drastically changed. There is a lot you're not privy to. People declined to help, and thus they won't have access to a cure. My goals have changed. And even if this wasn't the case, your assessment is erroneous.

 

[IsthmusSIBO]

The situation has drastically changed. There is a lot you're not privy to. People declined to help, and thus they won't have access to a cure. My goals have changed. And even if this wasn't the case, your assessment is erroneous.

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Well, good job for you for having found a multi-millionaire investor or whatever good news is happening behind the scenes, since that is what you are referring to “there is a lot you are not privy to”.

Personally, I am saddened to have found out about FMT now that all of these controversies have happened and that you have lost complete faith in humanity. But you have made it clear that whatever I think about, it doesn’t matter.

Regardless, I hope you can get the cure you have chased for your entire life. And when you do, hopefully you can rest from all the suffering you have gone through for 40 years and live your life.