2 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.