https://www.humanmicrobes.org/blog/fda-fmt-regulation
Response to FDA warning letter, proposal for FMT regulation, and some background of this project.
Reminder that the FDA is the state mechanism to protect the wealth of the pharmaceutical giants. The very few times they (the FDA) actually facilitate improvements in medicine/health are only as a side effect of that mission and are completely incidental.
Dr. Alexander Khoruts (University of Minnesota GI, Director, UMN Microbiota Therapeutics Program) made a similar comment. https://forum.humanmicrobiome.info/threads/designer-hit-panel-discussion-achieving-cures-together-dec-2023-peter.216/
He asks an FDA adviser "Does the FDA care more about profits or people?", and the response he gets is "one of the missions of the FDA is to protect the interests of commercial developers". Another question to the advisor: "How much influence does the industry have over the FDA decisions?", A: "A lot".
Here's an example of virtually no one out of 1.2 million people caring whatsoever: https://forum.humanmicrobiome.info/threads/high-quality-stool-donors-are-more-rare-than-one-in-a-million-ai-fundi.304/post-760
This is the kind of thing that for me invalidates all those pro-natalism "large population = more chances that one person's going to do something great" arguments. 8 billion people and a single disabled person is left to do it on their own. Especially when it's something like this where anyone/everyone can do something to help, and 99.99999% of people just simply can't be bothered.
I mean, from what I read there, it send the problem is the messaging.
If I got an email that said "How badly do you want a cure for yourself or your loved ones? What are you willing to do for it?" I'd automatically assume it's a scam, spam, or both.
Why? Because
A) it doesn't specify immediately what the cure is for, and B) that kind of writing style is used by scammers constantly.
The fact that the rant does sound like those of conspiracy theorists (even though I personally don't believe it's completely untrue) doesn't help, because you know who else uses language exactly like that?
Scammers. You know how many snake oil sales people do the "big pharma doesn't want you to know X thing will cure you!".
The last terrible part of the messaging is that it implies a potential cure all has been discovered.
Except, anyone with even basic biological knowledge would know that's not the case.
Even if a panacea type microbiome WAS discord, it won't cure everything. Cancer is one immediate example. It already would be impossible for it to prevent many diseases. Viruses for example that enter through the sinuses, or again, cancers caused by viruses. Heck even then something like norovirus would still wreck you too.
This sounds more like someone who knows some knowledge but isn't an actual expert in it being used by possibly a scammer (or someone using some underhanded methods to raise legitimate good funding).
Not to mention it's a big ask to strangers who probably don't even know what a microbiome is. And that's not even getting into how the field has already been filled with scammers for years ( "take L. Bacillus and it'll cure your arthritis!" as one example of thousands).
To clarify, what I'm saying is y'all need some campaign and ad managers. And based off what another commentator here said, more legitimacy. Using Zelle for payments and lacking simplified data visuals isn't it.
I'd be glad to help how I can, but free tip - calling nearly the whole planet careless assholes (pun not intended) won't get you much support, nor do you give a good image to what you support. You catch more with honey than with vinegar.
y’all need some campaign and ad managers
As the blog notes, there is no funding for that.
I don't see anything wrong with Zelle, and multiple payment options are offered.
I’d be glad to help how I can
That would be great! There are various discussions on the microbiome forum:
Joined, but you should probably have moderation set at a lower strictness level while the activity level is still relatively low. Having to wait to be able to be active when trying to recruit people to join the discussion really hinders with that goal.
Is there a Lemmy instance for the site as well?
There are at least as many spam/bot signups as there are humans, so account approval negates that completely. Forums aren't time-based like lemmy and reddit, so there is no sense of urgency. Discussions can take place over months/years. It's possible to turn on the ability to make a post prior to registering, then when your registration is finalized it gets posted, but I'm not sure how dependable that is. I wouldn't want people losing content they tried to post due to some cache issue.
I haven't bothered creating anything on Lemmy. I've been urging the Xenforo software developers to join the fediverse. Discourse forum software is doing it, so we may soon see discourse forums show up on lemmy.
Ah, that's why I was asking about Lemmy. Provides a more open quick discussion path than forums, which then helps funnel actual people to the more regulated forums in the future.
I'm doubtful that creating a lemmy community would funnel people to the forum. There is a lot to like about the forum format over time-based ones like lemmy. And the lemmy software is much newer and more incomplete/deficient than Xenforo. I think creating a lemmy community might just lead to fracturing of content/discussions, which would be detrimental. Also, unless you host your own instance it's not super reliable (as we've seen with reddit and other reddit-alternatives).
I’d automatically assume it’s a scam, spam, or both.
Why?
The email linked to the blog. The question was asked at the end of the blog.
Even if a panacea type microbiome WAS discord, it won’t cure everything. Cancer is one immediate example.
You may be interested in https://humanmicrobiome.info/cancer/.
It already would be impossible for it to prevent many diseases. Viruses for example that enter through the sinuses, or again, cancers caused by viruses. Heck even then something like norovirus would still wreck you too.
This is not correct. Not everyone gets sick from x virus. The primary reason is differences in their immune system and gut microbiome. Some relevant links for you:
This sounds more like someone who knows some knowledge but isn’t an actual expert in it
No offense, but that describes your comment. The blog should absolutely not sound like that given that it provides citations for its claims.
Not to mention it’s a big ask to strangers who probably don’t even know what a microbiome is.
The 1.2 million people who were sent the email & blog are people who are already familiar with the humanmicrobes.org project. Many of them hold advanced medical & biology degrees.
I agree though that many people are still not familiar with the gut microbiome and FMT. Do you have any suggestion in this regard?
The email linked to the blog. The question was asked at the end of the blog.
I explained the other reasons, but a link doesn't help. Phishing is one big reason.
However later in your comment you mention the email was sent to people in a mailing list, which I'm assuming means they voluntarily enrolled.
In that case, it goes back to messaging. It still sounds like a scam. That's still the core issue in all this: how your message is presented.
You may be interested in https://humanmicrobiome.info/cancer/.
I'm already knowledgeable on study of the human microbiome. That's why I'm commenting on here. Having a "perfect" biome still wouldn't prevent all cancers. Non-Hodgekins POST lymphoma for example. Rare, yes, but still thousands of people. And when you count all rare and unusual cancers it's still millions. And there's still no good evidence that the perfect biome would stop an existing cancer.
Speaking of, it also wouldn't help anyone with an organ transplant either. You'd still need immunosuppressants (or the newer drug class, immuneobliviants) which would still affect the biome. At least until compatible organs can be lab grown.
There is evidence that it would immensely help with preventing nearly all human-cell borne cancers however, and in my opinion, THAT'S something your messaging should focus strongly on. Having a proven potential to stop a majority of cancers is still huge, and to the less knowledgeable person, sounds much more realistic and obtainable.
This is not correct. Not everyone gets sick from x virus.
Ah but see you're admitting people still will get sick with currently incurable diseases. That's what I meant about your messaging being flawed - you're touting this as a cure all, when really it's a mass preventative (which again, is still extremely important and something really big).
Speaking of, it also wouldn’t help anyone with an organ transplant either.
FMT may negate the need for most organ transplants. Eg:
Etc.
There is evidence that it would immensely help with preventing nearly all human-cell borne cancers however, and in my opinion, THAT’S something your messaging should focus strongly on.
Human Microbes doesn't do any specific messaging/advertising. Just the website where it covers the gut microbiome regulating the entire body and playing a major role in virtually every aspect of health & development. I would think that narrowing the focus to one type of cancer for example would be detrimental.
you’re touting this as a cure all, when really it’s a mass preventative (which again, is still extremely important and something really big).
I think the potential for both prevention and treatment exists for most conditions that are currently beyond medical capabilities. And there is a ton of evidence for this in the wiki I shared. Sure, there are some things that FMT won't be a solution to of course.
FMT may negate the need for most organ transplants. Eg:
Again, preventative care. Which in my opinion is equally if not more important than curing existing illness too. A perfect microbiome will not regrow an already permanently damaged organ, which is why transplants are done. Trust me, there's not enough organs (due to various reasons, not because of a lack) to give everyone a transplant, and bacteria are not a panacea. I'm trying to make you realize that it you keep speaking of it as if it is, with only a single biased source, while not admitting the limitations, hurts such a cause greatly.
Human Microbes doesn't do any specific messaging/advertising. Just the website where it covers the gut microbiome regulating the entire body and playing a major role in virtually every aspect of health & development. I would think that narrowing the focus to one type of cancer for example would be detrimental.
I think you misunderstood. Human-cell borne cancers mean all cancers that happen through natural cellular damage, degeneration, and other immuno-failing reasons.
Basically all cancers not caused by virii, environmental damage/injury, etc.
Which is the majority of cancers.
I think the potential for both prevention and treatment exists for most conditions that are currently beyond medical capabilities. And there is a ton of evidence for this in the wiki I shared. Sure, there are some things that FMT won't be a solution to of course.
Correlation does not equal causation. There is statistically significant evidence that there's a lot of potential here, but there is yet to be solid evidence that this actually treats most conditions. There hasn't been anywhere NEAR enough research to even make such a claim.
I’m trying to make you realize that it you keep speaking of it as if it is, with only a single biased source, while not admitting the limitations, hurts such a cause greatly.
I think there may be a misunderstanding there. I certainly recognize that FMT and the gut microbiome have limitations.
There is statistically significant evidence that there’s a lot of potential here, but there is yet to be solid evidence that this actually treats most conditions.
That's all I've said as well.
Anyway, you seem to think that FMT's potential to treat/prevent most types of cancer is something that should be emphasized more. If you have specific suggestions I'm happy to hear them.
There's a lot to start with.
The first thing that should be maybe adopted by the scientific community is. Being a tad bit specific on its terminology when discussing certain things outside of research papers (and depending who is giving the grant, maybe certain grant applications).
FMT for example, while accurate, makes it a (literally) hard pill to swallow for those less scientifically knowledgeable. The issue of course being the fecal part of FMT. Starting by using just MT or GMT (G for Gut) would make people not as knowledge on the topic more interested in hearing more, rather than instantly turning them off. It would also be better to not use the acronym when bringing it up in a setting outside of, well, the microbiome community really.
Sure, we know it's fecal, but people who may support the cause in the future may not be as interested in the details, much like how many people who donate or support cancer research don't necessarily know specific terminology like R-CHOP for example.
The important part is to at least first get people to actually engage in the conversation, and not shut it down because "ew, I'm not taking poop transplants".
That's the very first thing that should be used/changed when bringing this up, in my opinion.
Reading the site, it's interesting, but there are too many unknowns for me to get excited. Dosing, storage, pricing, delivery, effects, side effects all still seem unknown or not well understood.
Getting directly mailed a bag a poop after paying someone through zelle is a pretty wild thought.
Maybe FMT is a good idea, but it's still too unknown for me to accept it.
Regarding regulation, potentially it could follow the path of supplements which seems to be immune from the FDA, FDA doesn't regulate multivitamins nor yogurt.
Also explaining eating ass to the FDA in a formal letter is hilarious
Yes, FMT is super experiemental. The point of the blog/website is not to convince people to buy poop, it's to find ideal stool donors who may be able to cure a variety of diseases.
Maybe FMT is a good idea, but it’s still too unknown for me to accept it.
It can't become "more known" unless a highly effective donor can be found. And such a donor can't be found unless people start helping...
I don't think FMT is appropriate to regulate as a supplement. The ingredients of supplements are known and standardized. FMT is an extremely complex and dynamic ecosystem. Yogurt is a handful of known microbes in a highly controlled environment. FMT vs yogurt is like the universe vs a zoo.
Agreed
I feel like coordination with a professional sports coach would be a good start, the players are already accustomed to many tests, the team doctor would probably be interested in gut biome v performance, and it's a pre-selected pool of young, healthy, athletic people with at least semi-controlled diet.
Be sure to actually read the blog. I made a post about this in another community and one person completely ignored the blog and used deceptive tobacco and oil industry tactics to spread FUD and disinformation. But people who actually read the blog should be immune to that.
For example, here is the reaction of a normal and knowledgeable person who actually read the blogs: https://twitter.com/chydorina/status/1767995009771647375