3 replies to this topic

[MaximilianKohler]

I'm a patient who has been on disability for CFS, IBS, and more for a few decades. Here's a 10-minute video covering the microbiome, FMT, and my history and efforts:

I created this non-commercial database of microbiome research https://humanmicrobiome.info, and later on I founded https://www.humanmicrobes.org/ to try to find high-quality stool donors for FMT. I've screened over a million stool donor applicants at this point. Unfortunately, I haven't found any that meet the ideal criteria. You can read more on the blog https://www.humanmicrobes.org/blog.

I recently received a warning letter from the FDA which puts the future of the Human Microbes project in jeopardy. I just posted two new blogs about it:

• The FDA and FMT regulation.
• High-quality stool donors are more rare than one in a million? AI, funding, and potential.

I wanted to post here to see if anyone has any advice about what could be done. Perhaps a letter-writing/petition campaign to the FDA could be organized?

[MaximilianKohler]

Here's an update and overview of the situation: https://forum.humanm....520/#post-1370

 

FMT is extremely promising for the treatment and prevention of many diseases as well as aging itself, but 8 billion people continue to leave everything up to me. I'm planning on protesting at the US Capitol, as I've run out of options.

[MaximilianKohler]

I drove to DC from California to protest at the Capitol, only to find out that they've pretty much locked off any effective method of protest unless you have a huge crowd with you + the news media.

 

So the current situation is:

* There is a simple treatment for numerous chronic diseases, including aging itself.

* It's illegal for patients to make a genuine effort to obtain it on their own.

* Virtually no one in the patient community cares enough to do anything.

* It's a risky business with an unknown regulatory future, so people are not going to invest in it for monetary reasons.

* The public research community is unable/unwilling to take on a unique project like what is needed to find highly effective donors.

* There is no official way to go "legitimately" through the system to get funding and support for a hugely important project like this.

 

The only options I see are:

* Get one or more federal legislators to take action. This is what I've been trying, and encouraging others to try. So far unsuccessfully.

* Obtain philanthropic funding/support. I've been trying this unsuccessfully. Any clues/assistance would be appreciated.

* Convince RFK Jr. to back this effort. I've been unable to get in touch with him, but I created a request on the "Policies for the People" website that he has recommended. You can vote!

Edited by MaximilianKohler, 21 November 2024 - 05:30 PM.

[MaximilianKohler]

I've been living in my car here in DC since Nov 2024, visiting the congressional offices most days, talking to dozens of congresspeople. Recently, one of their staff told me they basically ignore individuals, and I need to recruit more people to petition them in support of the same goal.

 

So, whoever would like access to an existing treatment for most chronic diseases, including aging itself, can email me, and I can guide you through contacting specific congresspeople.