I have spoken to dozens of Congresspeople at this point. I was planning on listing each individually, like before, but I don't think that would be useful right now.
For the members of the Senate Health Committee,
not a single staff member passed on the information or mentioned anything about it to their Senator. This includes offices where I sent the staff a list of studies showing that FMT is a treatment for the Senator's own condition. After I went
directly to the Senators on the Health Committee, some of them seemed kind and interested, but still, none of them got back to me or did anything about it. When I saw some of them for a second time, some seemed to want to avoid me, and one who was very kind previously now seemed completely different -- uneager and unenthusiastic.
This kind of about-face made me wonder if these guys are scared of the
pharmaceutical industry. Perhaps that's not the reason though.
A good number of the Congresspeople I talked to definitely seem like
psychopaths.
Staffers:
One of the Senators was very nice to me and had me meet with his staff. I had previously sent his healthcare staffer all the info, and she responded with an offer to set up a staff meeting, which I consented to but then didn't hear back even after following up again. A few staffers from various offices have done this to me.
I think they may do it both as a way to dismiss persistent people, and as a way to cover their ass so they can say "
Oh, we were trying to set up a meeting".
During the meeting, she asked me what FMT stood for, so it seemed clear that she didn't review the information well, which seems very common. So
one of the biggest hurdles seems to be getting the staffers to actually review the information. Numerous staffers have very clearly not reviewed the info before dismissing it.
It seems like the staff don't care about your issue at all unless their Senator tells them to care. And even then, I'm doubtful the staffer even reviewed it well at that point.
We visit their office to tell them we're following up on a healthcare issue. They seem super helpful and give us the email of the healthcare staffer. But then we email them and still get no response. And when I did finally get a response from two of them, it was clear they hadn't even read it.
So the staffers at the front desk give you the impression that they're professional, competent, and care. But then for some reason, the healthcare staffers don't seem to care. I'm not sure why. It could be as simple as laziness, since it seems unlikely that anyone would find out if they're reading stuff or not.
A few of the staffers/offices completely lost the info I gave them, and that's why it wasn't reviewed.
Bernie Sanders' HELP staffer nearly convinced me that she would solve this. I almost went home after talking to her. She never followed up with me even though I did follow up with her, and she even ran into me in person multiple times over the months I've been here, and ignored me.
Research (conducted in the US itself) says that what bottom 90% of Americans want has zero influence on actual US government policies. The top 10% is much more influential
Based on my experiences since August 2024, it seems that
the reason is that the staffers usually won't even read what you send them, much less discuss it with their congressperson. So the congresspeople are kept completely in the dark about important issues.
During the
RFK hearings, where chronic disease was the central topic, there wasn't a single mention of the microbiome, antibiotics, or FMT. And when I spoke to the Senators on the Health Committee, only the GI doctor and one other Senator were familiar with it.
So the staff are either incompetent, evil, overwhelmed, or there's something in their job description that is systematically preventing every single one of them from reviewing and briefing their Congressperson on the causes of chronic disease and the most promising intervention to solve the chronic disease crisis.
All this despite the fact that they are constantly holding
Congressional hearings about related topics. Eg:
Wednesday, Apr 30, 2025, 10:30 AM – SD-106, Appropriations, Hearings to examine biomedical research, focusing on keeping America's edge in innovation.
Whatever the cause, this needs to be remedied, because a disabled patient should not have to drive across the country and spend months living in their car and visiting the Congressional offices each day to get someone to read and act on an extremely important issue.
John Fetterman:
He promised to get back to me the first time I talked to him in the hall (months ago). He never did. I followed up and was able to contact him directly. I told him "
If you care, there are many ways you can help with very little effort". When I saw him again a month or two later, I asked him why he didn't care. He promised again to talk to me about it. When I saw him again, he talked to me and said "
None of us [in this office] are doctors", as a way to indicate that none of them felt qualified to review and vet the information I gave them. That seems insane to me.
Also, one of the Senator's healthcare staffers was an MD, and I still didn't hear back.
My Congressmen:
Senator Alex Padilla:
Most Congresspeople will stop and talk to me for a few seconds. Senator Padilla would not. I told him I needed his help, he gave me the "1 moment" finger and said he'd be back. He came back an hour or more later and ignored me. I saw him again some weeks later, and he still ignored me, so I didn't bother trying to talk to him again.
Congressman Mark Takano:
I still haven't received a response since I first contacted them in August 2024. I've followed up via phone and email multiple times. When I visited the office in November, the staffer told me he was going to speak to Rep Takano about it in December.
I visited them again on Feb 5 and the same staffer spoke to me and basically said Mark Takano's not interested in doing anything. He chatted with me about it for 15 minutes, and clearly, there are things they can do, such as contact the agency heads, and the Health committees and their chairs, but they're just not interested.
It sounded like all they care about is stopping the Republicans, and that takes up all their time. But that's obviously a BS excuse given that they ignored me for many months before the Republicans came into office.
NIH:
I eventually got a response from one of Senator Cassidy's staff, making it sound like it's completely up to the NIH because "
the Senators don't get involved with specific treatments". Yet NIH does not allow people to protest on their campus, and there is little other way for me to bring this to their attention. A few of the letters I mailed to the physical addresses of NIH and HHS were rejected and returned.
I spoke with the new NIH Director, Dr Jay Bhattacharya. I have something to finish up in the Senate. Once I'm done, I'll try protesting outside NIH if I still haven't heard back.
I agree that this is largely up to NIH, and NIH can solve this entirely on its own. NIH can run/fund/enable the clinical trials the FDA wants, and even if the FDA approved FMT & this project, we still need funding and partnerships to conduct studies & clinical trials on clearing the existing microbiome.