Incoming trump admin with RFK signals new start for FDA Healthcare system 

indigo34 said:
If they (HHS) come out and say there is a connection between autism and the microbiome I feel like they will have to start funding FMT studies for kids with ASD. It would be unethical not to anyway. And that could help get the ball rolling in the right direction.
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Arizona State University has been doing FMT studies in kids with ASD for years. They found benefits. It hasn't translated yet into the treatment being widely available for ASD kids though.
 
SFBayFMT5 said:
Arizona State University has been doing FMT studies in kids with ASD for years. They found benefits. It hasn't translated yet into the treatment being widely available for ASD kids though.
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Here's a study that shows autism is caused by an aspergillus infection in the gut, and it was cured using anti-fungals. I guess it's peripherally related to FMT since it shows the connection between a gut issue and neurological issues.

https://pubmed.ncbi.nlm.nih.gov/33132781/

Case Study: Rapid Complete Recovery From An Autism Spectrum Disorder After Treatment of Aspergillus With The Antifungal Drugs Itraconazole And Sporanox​


I can make a full post on it at some point if anyone is interested.

Video on it:
https://rumble.com/v5e17tp-possible-cure-for-autism-treating-underlying-aspergillus-infection.html


I think more broadly, I'd like things to go back to FMT being available when prescribed by a DR, not needing an IND or any weird paperwork. We NEED to get this AWAY from the universities, studies, regulations, big pharma, FDA regulation, and everything that up till now has completely blocked it from being accessible. Again the whole "more studies need to be done," is code for "it works and we're going to gatekeep it, you will never access it." We need COMPLETE DEREGULATION. Let the nerds run studies if they want but in the meantime, make it accessible for people who want the right to try. Open stool banks back up and let DR's and patients use their own discretion. People who give up their freedom for safety deserve neither. Obviously there are risks, but our enemies will use those "risks" to gatekeep this forever unless we have the balls to say "the risks are fine, the treatment is worth the risk."
 
I don't agree with "complete deregulation". I've opposed it since the beginning, and advocated for better regulation focused on donor quality. Complete deregulation would result in people going to doctors (or even various scammers), expecting a safe and effective treatment, receiving FMT from low-quality donors, getting worse, developing new conditions, and making FMT seem much more dangerous than it is. There would be a huge backlash (rightfully so) on the FDA for allowing such a dangerous thing to take place.

You should read these if you haven't yet:

This is not really the correct thread to debate this though.

SFBayFMT5 said:
Arizona State University has been doing FMT studies
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ASU has been doing a lot of good stuff. The one thing I'm perturbed by is their use of low-quality donors. I think it's absurd that they've had to crowdfund millions of dollars to do FMT clinical trials.

They and their funders should be helping me get access to high-quality donors and reform the research system.
 
Michael Harrop said:
I don't agree with "complete deregulation". I've opposed it since the beginning, and advocated for better regulation focused on donor quality. Complete deregulation would result in people going to doctors (or even various scammers), expecting a safe and effective treatment, receiving FMT from low-quality donors, getting worse, developing new conditions, and making FMT seem much more dangerous than it is. There would be a huge backlash (rightfully so) on the FDA for allowing such a dangerous thing to take place.

You should read these if you haven't yet:

This is not really the correct thread to debate this though.
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Yup, I've read them. To be more specific about deregulation: people should be free to get FMT from reputable sources and view the stool analysis, as well as donor profile (age, sex, diet, weight, hormone levels, any relevant health info along those lines).

The deregulation I'm talking about is getting rid the bureaucratic hoops we have to jump through in order to access it. Obviously there should be protocol for buying and selling it, but regulating access to it is insane and only benefits big pharma. Sorry for the confusion.
 
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RFK Senate appropriations hearing:​

https://www.appropriations.senate.gov/hearings/a-review-of-the-presidents-fiscal-year-2026-budget-request-for-the-department-of-health-and-human-services

Another RFK hearing where he mentions the microbiome. So he seems to be on board.

I've been trying to persuade Democrats to work with RFK instead of just opposing and attacking him, but it doesn't look like my efforts have been paying off. I guess they're trying to give their voters what they expect & want, but I would think they could still act behind the scenes to support something that would be greatly beneficial to their own goals and constituents, but so far, they have not been receptive.

I love that he calls out Democrats for allowing chronic disease to skyrocket under their watch. I just desperately hope that he means what he says and does something to make an existing cure available.

I think the main issue right now is to get him to do something about FMT and donor quality sooner rather than later.
 
An interesting PBS piece on Casey Means, from May 21, 2025: https://www.pbs.org/newshour/show/the-background-and-career-of-casey-means-trumps-pick-for-surgeon-general

Means' nomination has drawn criticism not just from the medical community, but also from conservative Trump allies. Far right activist Laura Loomer ridiculed her on social media as a total crackpot who uses shrooms as plant medicine and talks to trees.

And Kennedy's former running mate, Nicole Shanahan, has also come out against Means' nomination.
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Her nomination is subject to Senate confirmation, which means I could probably spot her and talk to her. I'm not too sure what I would say though.

The U.S. Surgeon General is the Nation’s Doctor, providing Americans with the best scientific information available on how to improve their health and reduce the risk of illness and injury. https://www.hhs.gov/surgeongeneral/index.html
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It's a pretty big deficit that she doesn't talk about antibiotics and the gut microbiome in her newsletters and "health wishlist".
 

Another NIH/Dr. Bhattacharya hearing:​

https://www.appropriations.senate.gov/hearings/a-review-of-the-presidents-fiscal-year-2026-budget-request-for-the-national-institutes-of-health

Another hearing where an existing treatment for most chronic diseases is ignored. Dr. Bhattacharya says the right things, but they still haven't done anything.

I spoke to him after the hearing and asked "Any idea how long it will take for us to get access to FMT?", and there wasn't even a "we're working on it". The response was "I'm not sure, I'd have to look into it".

So it appears there's been little to no effort/progress on this.

I can't protest outside NIH by myself since they don't allow protesting on campus. I'd need something larger than an umbrella for shade, a restroom, and extra water.
 
Michael Harrop said:

Another NIH/Dr. Bhattacharya hearing:​

https://www.appropriations.senate.gov/hearings/a-review-of-the-presidents-fiscal-year-2026-budget-request-for-the-national-institutes-of-health

Another hearing where an existing treatment for most chronic diseases is ignored. Dr. Bhattacharya says the right things, but they still haven't done anything.

I spoke to him after the hearing and asked "Any idea how long it will take for us to get access to FMT?", and there wasn't even a "we're working on it". The response was "I'm not sure, I'd have to look into it".

So it appears there's been little to no effort/progress on this.

I can't protest outside NIH by myself since they don't allow protesting on campus. I'd need something larger than an umbrella for shade, a restroom, and extra water.
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Don't give up.
 
SFBayFMT5 said:
Who is most important for us to contact at this point?
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There is no one person whom people should just randomly contact. You need to have a single coherent message and request. That's why petitions are used. You would need one letter/petition, similar to this.

But 10 anonymous votes on that post is nothing. An actual petition that people sign with their names and info is what other advocacy organizations do (MEAction example), but they get thousands of signatures. That's the kind of support this should be getting.

@Fmt2024 submitted a rough draft for a petition, but no one gave feedback. They also made some social media posts on reddit, which didn't result in anything.

One staffer who is a doctor said "Even 5 people is better than 1". I'm not sure if he meant 5 people need to travel to DC, but that's generally what I see people doing.

EpilepsyFMTcure said:
Maybe this is just linguistics, but you organized this site, and you're there trying to advocate for all of us. Just say you're representing Human Microbiome organization and that might open more doors. I mean, even I have an LLC I use occasionally to get stuff done, even though it's just me. Life's all about perception.
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They know I made and run this website. They need to see real people in the US (especially in their state) supporting a specific goal/request.
 
I think what we're running up against is a sort of "Catch 22" where most people don't try FMT because it's not readily available, and so then you don't have huge groups of people with success stories to tell who would sign petitions like this. Add to that the fact that even among those who DO try FMT, their first FMT may not be particularly successful. Just imagine what would have happened if YOU, Michael, had happened to try first one of the donors you've come across who had the right stool type, no health problems, etc., but still wasn't particularly healing. People who have that sort of experience would be forgiven for thinking that a lot more basic research is necessary before FMT is ready to use in humans.

It's those of us for whom our first FMT was a godsend who have reason to push for this. And while there are a substantial number of us, in the greater scheme of things we make up a very small fraction of the population.
 
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SFBayFMT5 said:
I think what we're running up against is a sort of "Catch 22" where most people don't try FMT because it's not readily available, and so then you don't have huge groups of people with success stories to tell who would sign petitions like this. Add to that the fact that even among those who DO try FMT, their first FMT may not be particularly successful. Just imagine what would have happened if YOU, Michael, had happened to try first one of the donors you've come across who had the right stool type, no health problems, etc., but still wasn't particularly healing. People who have that sort of experience would be forgiven for thinking that a lot more basic research is necessary before FMT is ready to use in humans.

It's those of us for whom our first FMT was a godsend who have reason to push for this. And while there are a substantial number of us, in the greater scheme of things we make up a very small fraction of the population.
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Has anyone considered selling this to the military as a way to reduce PTSD, tinnitus, vertigo? There's studies showing it works for those things, and the military might have an interest. Anything domestic runs up against big pharma, buuuut there's always exceptions. The tinnitus thing is interesting because the symptoms of Havannah Syndrome could be caused by a gut infection, even one given on purpose by a foreign adversary.
 
SFBayFMT5 said:
I think what we're running up against is a sort of "Catch 22" where most people don't try FMT because it's not readily available, and so then you don't have huge groups of people with success stories to tell who would sign petitions like this.
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I don't think that's correct. You shouldn't need huge groups of people with FMT success stories. There's a huge body of scientific evidence supporting the gut microbiome and FMT, which should be enough to get the support of the majority of people in the chronic disease communities. It's been enough for the ASU team to crowdfund something like $8 million.

It's also been enough for people to spend large sums of money ordering an unregulated, potentially deadly medical product from HumanMicrobes.org. If people are motivated enough to do that, they should be motivated enough to help do simple things like create and sign petitions, send emails, etc.

When I attend the Congressional Hearings, there are hundreds of people lining up for hours to try to get in. They're associated with organizations like the Alzheimer's Impact Movement (AIM) Advocacy Forum https://alzimpact.org/. American Cancer Society https://www.cancer.org/, etc. These orgs are also able to get those people to travel across the country and visit their congresspeople's offices to lobby them in person. But like most advocacy organizations, they seem to be businesses rather than genuine attempts to obtain a cure. They either don't have contact info for a "scientific director" who might do something about this, or they don't respond if contacted.

But those are additional examples of how it is possible to get people from the general populace to take action.

SFBayFMT5 said:
It's those of us for whom our first FMT was a godsend who have reason to push for this. And while there are a substantial number of us, in the greater scheme of things we make up a very small fraction of the population.
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As I said, the staffer said even 5 people can be effective. Yet even the people who've received major benefits from FMT are not helping; you included.

EpilepsyFMTcure said:
Has anyone considered selling this to the military as a way to reduce PTSD, tinnitus, vertigo?
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Yes, I tried:

(From my personal blog) 2019, Dec 26. I want to submit an FMT clinical trial proposal to the US Army Medical Research and Development Command (USAMRDC).

You can see one person from the military initially responded, but then didn't respond further. I tried to look up who to contact about that, but either wasn't able to find anything, or I sent emails to one or two people and didn't get a response. If you're able to find good contacts, I'll do it.
 
Michael Harrop said:
Yes, I tried:

(From my personal blog) 2019, Dec 26. I want to submit an FMT clinical trial proposal to the US Army Medical Research and Development Command (USAMRDC).

You can see one person from the military initially responded, but then didn't respond further. I tried to look up who to contact about that, but either wasn't able to find anything, or I sent emails to one or two people and didn't get a response. If you're able to find good contacts, I'll do it.
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Haha NICE! Dude this is recent, which means maybe it'll take a few days to get some responses. Unless I'm misunderstanding the timing since these seem to be archived.

You can always frame this as a strategic weakness of the US military/civil defense: if China drops Klebsiella p into our water supply (or consumable products they sell to us even) it could make entire towns come down with epilepsy (or Havannah Syndrome). If there's enough bleach in the water it would kill it, and because of quorum sensing people with robust guts might be ok, but some towns don't chlorinate, and they could even aerosolize it (and this was done by the military in operation sea-spray in California which ended up killing a guy). I work in water supply and maybe its just more obvious to me, but the recent Chinese researchers trying to bring in a wheat blight fungus reaffirms my concerns. Bacteria is the future of medicine and warfare.

EDIT: Just noticed this was from roughly 5 years ago. I'd maybe try again. Like I mentioned, the Chinese researchers bringing in wheat blight fungus, maybe the military will realize the seriousness more now.
 
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