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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Two new hearings:​


Jun 25, 2025. Health, Education, Labor, and Pensions (HELP). Hearings to examine the nomination of Dr. Susan Monarez to head the CDC.
https://www.help.senate.gov/hearings/nomination-of-susan-monarez-to-be-director-of-the-centers-for-disease-control-and-prevention-department-of-health-and-human-services

Microbiology degree. More potential for this to be "the microbiome administration" that actually ends the chronic disease crisis. But there's still no action.

She was asked about chronic disease and didn't mention anything about the microbiome or anything useful/important.

Senator Marshall asked her about chronic disease and mentioned AMR (antimicrobial resistance) instead of collateral damage. It seems so ignorant and incompetent that it seems deliberate.

She didn't comment on collateral damage either. And she didn't mention FMT as an existing treatment for AMR.



RFK House Energy and Commerce hearing, Health Subcommittee, June 24, 2025.
https://energycommerce.house.gov/events/health-subcommittee-hearing-the-fiscal-year-2026-department-of-health-and-human-services-budget

In the house, RFK hearing, around halfway through (after AOC) there was an accusation about Calley Means having a conflict of interest.
 
I suspect the MOMENT they start talking about gut bacteria (FOR REAL, and not just "eat healthy for your gut bugs", they start talking about Klebsiella causing Epilepsy, Desulfovibrio causing Parkinsons, big pharma stocks are absolutely going to tank and go to ZERO, maybe even criminal referrals by the DOJ if pharma companies hid research and buried cures. Something to consider is they're openly talking about the heart damage the covid shots have done and have pulled them from the market for kids and pregnant women already. Things are moving in a more honest direction, slowly, but they're moving.

In my most optimistic view, the administration is waiting until they can get more tax cuts for middle class and poor people before doing this to keep their base happy, even if that specific portion (big pharma) of the market bottoms out. Lotta boomers keep their life savings in the market (classic boomer move: gamble with life savings lol). When the tariffs hit this coming month, jobs should surge, which means wage growth, and its easier to stomach a stock market hit if wages go up.
 
EpilepsyFMTcure said:
maybe even criminal referrals by the DOJ if pharma companies hid research and buried cures
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That's not what's happening. Pharma companies don't have to do anything but sit by and watch the public research system continually, incompetently fail to make a simple treatment/cure available. No one has to hide or bury anything; they can simply not try, because the FDA is preventing anyone who genuinely cares from trying.

EpilepsyFMTcure said:
In my most optimistic view
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If they were worried about the markets, they would announce it as soon as possible to give people as early a warning as possible, and slowly ease into it. So if anything, I think the point you raised indicates they do not intend to do anything.

I also think those types of optimistic assumptions are dangerous and lead to inaction.
 
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Those who allowed regulatory capture of the FDA are guilty and should be prosecuted. The companies that captured the FDA should be prosecuted as well.

Michael Harrop said:
I also think those types of optimistic assumptions are dangerous and lead to inaction.
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The future is bright and we will have cures. Everyone standing in the way will be exposed. Have some optimism! Optimism obviously doesn't mean sitting around doing nothing! :)

They just fired 17 of the vax approval people who rubber stamp ok'd everything that came across their desk which is awesome. If there was ever a time to notice corruption being rooted out, it's now!
 
EpilepsyFMTcure said:
I suspect the MOMENT they start talking about gut bacteria (FOR REAL, and not just "eat healthy for your gut bugs", they start talking about Klebsiella causing Epilepsy, Desulfovibrio causing Parkinsons, big pharma stocks are absolutely going to tank and go to ZERO, maybe even criminal referrals by the DOJ if pharma companies hid research and buried cures.
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It would be GREAT if more of the scientific community started talking about gut bacteria "for real" as you put it. But if the conclusions are what you are imagining (that specific species are "blamed" for diseases, as opposed to the lack of certain species causing diseases), then the cure that will be pursued will almost certainly be more antibiotics. But not only do we not want this, the problem there is that many people with these diseases will have taken antibiotics that kill these bacteria (fortuitously, for other reasons) and not gotten better, which will be a reason for everyone not already involved with these studies to be dismissive.

The issue seems to be, as you have likely already guessed, that "nature abhors a vacuum" and if you kill one thing, something else will fill its place, one that's in many cases worse than the original one you were trying to get rid of. And the only things widely available to "fill holes" are from one of two places on the bacterial tree of life--the Bacillaceae/Lactobacillaceae group within the Firmicutes and the genus Bifidobacterium within the Actinobacteria. If the hole you need to fill is from somewhere else on the bacterial tree, good luck getting something to fill it except from another human who already has it.

I suspect that a lot of the issue is the reliance on 16S stool tests, which miss many of the bacteria adhering to the mucosa (which are more directly interacting with the host anyway than those in the stool), and everything from the small intestine. I mean, some scientists are trying to "talk about gut bacteria for real", however they don't see anything except really broad trends where the specifics are very inconsistent. I even suspect that some of these broad trends might be misleading and/or misinterpreted--for instance the increase in Proteobacteria seen with antibiotics, which has been interpreted to mean that "Proteobacteria are bad in general", whereas I suspect that this is rather a sign that some critical Proteobacteria have been killed by the antibiotics (see the paper I posted earlier this year--https://forum.humanmicrobiome.info/threads/very-interesting-paper-about-metabolic-roles-in-the-gut-microbiome-aug.864/). But I don't see the studies getting any more consistent overall, which means that there is nothing other than "eat healthy for your gut microbes" that researchers can confidently say with evidence.

It's not a cover-up, it's a field that's searching under the only lamppost they have because that's the only place they can see anything clearly, while the answer is likely somewhere else.
 
EpilepsyFMTcure said:
Have some optimism!
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All used up over the past 10+ years.

EpilepsyFMTcure said:
Optimism obviously doesn't mean sitting around doing nothing!
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Well I'm still basically the only person doing anything.

EpilepsyFMTcure said:
They just fired 17 of the vax approval people
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Vaccines are mostly unrelated to the microbiome and chronic disease. If anything, everything they're doing wth vaccines is a red herring, distracting from the real issue, which has been ignored so far.

EpilepsyFMTcure said:
The future is bright and we will have cures. Everyone standing in the way will be exposed.
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Until they do something about FMT, everything else is largely irrelevant, and this wishful thinking is dangerous. Especially when this is what's in the news:

US FDA Makary’s Pharma CEO Tour Goes Against Transparency Rhetoric (May 2025) CEO Forums: An FDA Listening Tour to Engage Pharma CEOs

RFK Jr's MAHA project funnels millions from public health to private wellness industry (Jun 2025) MAHA’s Goal Is Not Health. Robert Kennedy’s movement promises more privatization
 
Michael Harrop said:
Well I'm still basically the only person doing anything.
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Said in a thread of many people all interested in finding cures thru this exact mechanism, many of us have already reached out to politicians and gov't agencies. If you had actually lost optimism and hope, you wouldn't be janitoring this forum! I'm too optimistic to think you're a pied piper, so go ahead and try a positive attitude for a little while! ;) Narcissism is not the way to go. :(

Watching poor science (vaccines) get exposed should give us every reason to think that real science is making a comeback.

SFBayFMT5 said:
It would be GREAT if more of the scientific community started talking about gut bacteria "for real" as you put it. But if the conclusions are what you are imagining (that specific species are "blamed" for diseases, as opposed to the lack of certain species causing diseases), then the cure that will be pursued will almost certainly be more antibiotics. But not only do we not want this, the problem there is that many people with these diseases will have taken antibiotics that kill these bacteria (fortuitously, for other reasons) and not gotten better, which will be a reason for everyone not already involved with these studies to be dismissive.

The issue seems to be, as you have likely already guessed, that "nature abhors a vacuum" and if you kill one thing, something else will fill its place, one that's in many cases worse than the original one you were trying to get rid of. And the only things widely available to "fill holes" are from one of two places on the bacterial tree of life--the Bacillaceae/Lactobacillaceae group within the Firmicutes and the genus Bifidobacterium within the Actinobacteria. If the hole you need to fill is from somewhere else on the bacterial tree, good luck getting something to fill it except from another human who already has it.

I suspect that a lot of the issue is the reliance on 16S stool tests, which miss many of the bacteria adhering to the mucosa (which are more directly interacting with the host anyway than those in the stool), and everything from the small intestine. I mean, some scientists are trying to "talk about gut bacteria for real", however they don't see anything except really broad trends where the specifics are very inconsistent. I even suspect that some of these broad trends might be misleading and/or misinterpreted--for instance the increase in Proteobacteria seen with antibiotics, which has been interpreted to mean that "Proteobacteria are bad in general", whereas I suspect that this is rather a sign that some critical Proteobacteria have been killed by the antibiotics (see the paper I posted earlier this year--https://forum.humanmicrobiome.info/threads/very-interesting-paper-about-metabolic-roles-in-the-gut-microbiome-aug.864/). But I don't see the studies getting any more consistent overall, which means that there is nothing other than "eat healthy for your gut microbes" that researchers can confidently say with evidence.

It's not a cover-up, it's a field that's searching under the only lamppost they have because that's the only place they can see anything clearly, while the answer is likely somewhere else.
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Good post and yes I know about the pitfalls of a mentality where antibiotics become the go-to treatment. It's interesting you mention the mucosa since the main strain I've been trying to fight off is Klebsiella P. It can survive off just the mucosa which is why for 70% of people with epilepsy, keto diet works, but 30% it doesn't. I'm in that 30% and I know exactly why, because that bacteria doesn't die off on keto. Probiotics (lots) have seemed to be the one thing that works, as well as avoiding most types of fiber. Bacteriophage will most likely be one of the best treatment options for me but hey, we'll see, I'm willing to try just about anything lol.
 
EpilepsyFMTcure said:
If you had actually lost optimism and hope, you wouldn't be janitoring this forum!
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I didn't say I lost hope.

I'll give you the benefit of the doubt and assume that you are merely ignorant about what I referenced. Because no decent person would say what you did if they knew what they were talking about.

In the future, you should be more careful about commenting on things without properly understanding them. These two threads would be a good starting place.
 
Michael Harrop said:
I didn't say I lost hope.

I'll give you the benefit of the doubt and assume that you are merely ignorant about what I referenced. Because no decent person would say what you did if they knew what they were talking about.

In the future, you should be more careful about commenting on things without properly understanding them. These two threads would be a good starting place.
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This is exactly the attitude that makes me skeptical of what your intentions are :(

In America, we have freedom of speech :)
 
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