Michael Harrop

The FDA is classifying FMT as an "unapproved drug". "Off-label use" only applies to approved drugs, as far as I know. I don't think Vowst is comparable to FMT. It's a human-sourced, multi-strain probiotic that has been granted drug approval since it successfully treats C. diff. It's something like 50 species of spore-forming bacteria. Any doctor who wants to do actual FMT would need an IND.

This is not true. The number of people who get worse from other sources is vastly higher than from HMorg's donors. And much of the poor results from HMorg's donors are because I let people continue using whatever donor they like, since all results are public, so people are making informed decisions about risk vs reward.

Another comment from someone who didn't bother to read any of the information they were given. Why don't you read the information you were given, and then tell us your opinion of what I should have done differently. If you read the previous comments in this thread, you would see he's a member of the microbiome forum that has been referenced and quoted, and came here from there. This is painful how many people here comment without reading anything. I think @SFBayFMT5 's comments are inaccurate because he's viewing the world through "broken glasses". It can be hard to determine whether he miscontrues things deliberately. This is not true.

This is one of my main concerns. If you create a culture where "people should not have to read links", you get that kind of result. That's not true. Re-read my response. I previously responded to that as well. That's a different question completely. I'm not sure what you mean by "medical suppliers". Do you mean doctors and such? They're not the ones who need to be forced to do anything. I guess you're referring to the following quote? If so, I didn't respond directly to that because it seems largely unrelated. I would be delighted if people with the know-how would help launch such campaigns. I lack that expertise. As previously mentioned and cited, the gut microbiome plays a major role in all chronic disease, and FMT is the primary intervention. So everyone dying from chronic diseases is dying from the lack of FMT. The reason there isn't outrage is ignorance and apathy. I've covered this extensively in various places. Here's a relevant quote from https://humanmicrobiome.info/fmt/#screening There are relevant sections for matching & quality further down on that page: https://humanmicrobiome.info/fmt/#impact-factors For those interested in what I mean by "donor quality", I wrote a blog about it on the HumanMicrobes website, but I may not be allowed to link to it here. The title is "The evidence and rationale supporting our stool donor criteria". @SFBayFMT5's experiences are most likely due to the heterogeneity of stools. Both from donor to donor, stool to stool for the same donor, and even different parts of the same stool. I already responded to that: https://forum.humanmicrobiome.info/threads/numerous-severe-adverse-outcomes-from-openbiome-fmt.880/ That is not the case. The facts are that it's unsupported by the evidence. I am not. I'm going where the evidence takes me.

It is a fact that FMT is an existing treatment for numerous chronic diseases. In the referenced wiki (https://humanmicrobiome.info/) you can browse through pages that cover various conditions, and you can find reviews on FMT broadly. FMT is the primary intervention for correcting gut dysbiosis. Nothing else comes close to the power of FMT for microbiome interventions. The efficacy of FMT is not extremely clear for every condition, but references were given regarding the reasons why it hasn't shown incredible efficacy yet, with the primary one being donor quality. This thread was based on these facts, and was supposed to be about making it available to patients who want to access it. The case was made. A summary was provided with links to more information. That seems like the most optimal way to present a large amount of information, but it appears that many of the commenters didn't review it. More on this below. Regarding "off-topic", the topic was "help making an existing treatment available", so general microbiome and FMT comments seem off-topic. But it's clear that's not going to work and that's a lost battle for this thread. Perhaps this thread can be renamed to "debating the value of FMT", and then we can make a new one later on for taking action. None of those alternative approaches come anywhere near the power of FMT. That comment displays the major knowledge deficit I mentioned, and I'm unsure how to remedy that. I think it would require the person to read through lots of research. So if someone hasn't been following the research closely, it seems like it would require a lot of learning in a short period of time, which most people aren't willing to do. But, that is one of the reasons I made this site: https://humanmicrobiome.info/, and it has pages on all of those things you mentioned. So the best thing you could do is browse through those pages to understand the status of those other interventions you mentioned, and how they compare to FMT. RFK has made this administration focus on the chronic disease crisis: Incoming trump admin with RFK signals new start for FDA It's what I was explicitly told by a staffer, and after my 9 months here in DC, it seems to be the way things work. The second comment seems irrelevant. I gave a summary, and linked out to many more citations. I think my position is extremely well supported by the evidence, but it is quite a lot to review if you're skeptical, and it does require that a skeptical person read through it all and check the citations. This comment indicates the information & citations have not been adequately reviewed. I thought it seemed more "spam like" if I made a new account on a forum I've never used and posted something like this. Whereas, if it was known that an existing member invited me, it would be better understood and received. Yeah, I read that rule and find it completely bizarre and antithetical for a science-based forum. In science we MUST provide citations, and members of discussions MUST click and read them to become informed, and the discussions should be based on the content of those citations. I hope a mod/admin can comment on this, because it makes it seem like this website is useless. A bunch of people commenting on things they haven't/won't read is extremely low quality and anti-scientific. I have no clue how I can get information across without people clicking and reading links. Additionally, OP already did that (copy-pasted the content) before you wrote that: https://scienceforums.net/topic/136443-an-appeal-to-help-advance-the-research-on-gut-microbiomefecal-microbiota-transplantation-in-the-us/#findComment-1293779 Here's a list of research on it: https://humanmicrobiome.info/intro/#cfsme Also relevant: https://humanmicrobiome.info/immune-system/ https://humanmicrobiome.info/intro/#autoimmunity I've personally received major benefits to CFS from FMT, and there are other individual reports such as this one. Hmm, it says 2017 at the top, but there are citations for 2021 and 2022. They make some accurate statements mixed in with ones I'd call extremely biased and/or ignorant. But I certainly agree that "there needs to be better research for FMT+CFS", and that's exactly what I'm advocating for -- FMT clinical trials with high-quality donors. Diet's role in FMT is not clear right now https://humanmicrobiome.info/fmt/#diet. But there's plenty of evidence that FMT on its own can be effective.

I would say "safe and effective". Many of the current quality of donors get poor results and even harm patients. Either one is fine. What's the opposite for "super-donor"? "High-quality donor" has an easy opposite. That would be nice. Unfortunately, most of the comments so far are off-topic. I guess the problem here is the same as in most of the general public -- most people aren't well-informed enough to have the motivation to take action, and most people lack the motivation to become well-informed on this. Thus, patients like me are sentenced to a slow death while an existing cure remains beyond our reach.

Here is a list of evidence to the contrary: https://humanmicrobiome.info/brain/. Causation has been well-established for years. "Complex interactions" is certainly correct. However, it's been shown that correcting gut dysbiosis, usually via FMT, addresses the root cause. Your last sentence refers to the gut microbiome as "one aspect", and lists "other aspects". You can see in that same wiki that the gut microbiome regulates the immune system, epigenetics, and development. So I think it's inaccurate to view it like that.

The primary issues are not with funding, they're with FMT donor quality. It's summarized in the first link in the OP, and elaborated on in the second link.

Thank you Otto! Hello everyone, I'm the disabled patient who has been trying to get access to FMT for over a decade. You can see later in the first linked thread that I've been living in my car in DC since November 2024, visiting the Congressional offices most days, trying to get someone in Congress to solve the issue. One of their staffers recently indicated to me that they basically ignore individuals and only take action if enough people contact them, so that's my current focus. I'm happy to answer any questions.