3 hours ago, exchemist said:

For instance the wife of a friend of mine needed one of these to get out of a chronic gut infection. They took it from her husband, because obviously they shared the same diet and so it was thought that would reset her to where she was before, and her system would be comfortable with that. It worked.

My wife doesn't take any shit from me, so that approach is off the table.

3 hours ago, exchemist said:

I confess also to being a bit bothered by the references to "high quality" donors. This could be the sort of handy get-out spiel a charlatan could use when, having taken somebody's money for a transplant procedure, the treatment is found to make no lasting difference. But let's see what he has to say.

I think one of the issues he is looking at is donors who have had prior drug treatments that lead to growth of drug-resistant bacteria in the gut. In 2019, a person died in the United States after receiving an FMT that contained drug-resistant bacteria. I am providing link partly so that Mr Harrop will understand I have been reading about this aspect of FMT.

https://web.archive.org/web/20190904210827/https://www.fda.gov/safety/medwatch-safety-alerts-human-medical-products/fecal-microbiota-transplantation-safety-communication-risk-serious-adverse-reactions-due

I'm also aware that Arizona State did a study on the possible benefits of FMT for autism. I will provide a link, but basically the authors conceded they had too small a sample size, and that their results were not conclusive. They were, as scientists like to call it, "suggestive." Which means that hype and wild enthusiasm, and sites that foster that, are not called for.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5264285/

1 hour ago, studiot said:

You may well be right about the funding.

But promoting this issue by conventional methods doesn't seem to gain as much traction as social media pressure (groups) these days.

Of course, letters, emails and so forth can easily be ignored (forgotten or lost) and only the sender is any the wiser.

The pressure generated by the much more open and public social media seems more effective these days.

Haha true, dat. As we know from the Post Office scandal, what really gets the attention of politicians is a media storm alleging injustice of some kind. Hard to see where that would come from in this case. Pretty hard to argue people are dying due to lack of funding for faecal transplants. I mean they may be, possibly, if they have some specific conditions, but jolly hard to prove, other than in well documented applications like c. difficile.

3 hours ago, TheVat said:

I'm also aware that Arizona State did a study on the possible benefits of FMT for autism. I will provide a link, but basically the authors conceded they had too small a sample size, and that their results were not conclusive. They were, as scientists like to call it, "suggestive." Which means that hype and wild enthusiasm, and sites that foster that, are not called for.

The study was designed as pilot and beside the limited participant numbers a big challenge is the lack of controls (and it is open label). That is especially problematic as many previous attempted autism treatment studies had fairly strong placebo effects (I think I also read at least one study where the calculated effect size for the placebo treatment was actually higher than the intervention, but I cannot recall the authors anymore).

I think one of the issues he is looking at is donors who have had prior drug treatments that lead to growth of drug-resistant bacteria in the gut. In 2019, a person died in the United States after receiving an FMT that contained drug-resistant bacteria. I am providing link partly so that Mr Harrop will understand I have been reading about this aspect of FMT.

There is also the complication that resistant bacteria have become ubiquituous in the environment. You can find certain resistances in pretty much any water stream and they are also present in our food chain. Of course, oral consumption does kill off some, but there there are bacteria that can survive stomach acids reasonably well and even if not, their DNA carrying resistance genes can be stochastically taken up by some incumbents of the gut. While without selective pressures they might vanish again, there is really not guarantee. This is especially true as some exporters and other genes can confer other selective advantages.

Although not a main part of my work, I occasionally see those data sets and samples and virtually all samples to contain some sort of resistances. Tet resistance is ubiquitous, for example. Anything that has been exposed to sanitary systems and/or agriculture pretty much has them.

1 hour ago, CharonY said:

The study was designed as pilot and beside the limited participant numbers a big challenge is the lack of controls (and it is open label). That is especially problematic as many previous attempted autism treatment studies had fairly strong placebo effects (I think I also read at least one study where the calculated effect size for the placebo treatment was actually higher than the intervention, but I cannot recall the authors anymore).

I think one of the issues he is looking at is donors who have had prior drug treatments that lead to growth of drug-resistant bacteria in the gut. In 2019, a person died in the United States after receiving an FMT that contained drug-resistant bacteria. I am providing link partly so that Mr Harrop will understand I have been reading about this aspect of FMT.

There is also the complication that resistant bacteria have become ubiquituous in the environment. You can find certain resistances in pretty much any water stream and they are also present in our food chain. Of course, oral consumption does kill off some, but there there are bacteria that can survive stomach acids reasonably well and even if not, their DNA carrying resistance genes can be stochastically taken up by some incumbents of the gut. While without selective pressures they might vanish again, there is really not guarantee. This is especially true as some exporters and other genes can confer other selective advantages.

Although not a main part of my work, I occasionally see those data sets and samples and virtually all samples to contain some sort of resistances. Tet resistance is ubiquitous, for example. Anything that has been exposed to sanitary systems and/or agriculture pretty much has them.

What is tet? Tetracycline?

Sorry, lab lingo- yes tetracycline. One of the reasons is its wide use in agriculture to promote growth.

13 hours ago, exchemist said:

@Michael Harrop seems convinced there is potential for CFS/ME, though he has yet to explain why. I'm hoping he can enlighten us, though I'm starting to wonder if it is not just a hope he has, without any specific evidence. I confess also to being a bit bothered by the references to "high quality" donors. This could be the sort of handy get-out spiel a charlatan could use when, having taken somebody's money for a transplant procedure, the treatment is found to make no lasting difference. But let's see what he has to say.

He had great but temporary success with two donors early in his journey of FMT trials. More recent donors he has found have been less effective, which he attributes to poor donor quality. A large part of donor quality in his experience is stool type (i.e. #4 on the Bristol scale), however this by itself is apparently not sufficient. He can elaborate on the other criteria more if he likes--I've been trying to get him to pin these down better because as you have observed, these seem like a "moving target" that would be difficult for a study coordinator to outline in a proposal.

I also had dramatic--albeit temporary--success with a FMT, from OpenBiome. The purpose was ostensibly C. diff, as I had recurrent C. diff at the time--but the most dramatic benefits were for things that had been going on MUCH longer than the C. diff. It greatly improved a whole constellation of neuropsychiatric and digestive issues that were all part of "post-Lyme disease"--I.e. that I'd attributed to continuing inflammation following treatment for a (laboratory confirmed by the ELISA/Western blot combo) case of Lyme disease, but that appear to have actually resulted from a disrupted gut microbiome. Others who have been through the grueling Lyme antibiotic regimen (after seeing doctors, out of desperation, who promote treatment much longer than is wise) have reported similar abrupt gains from FMT, it's not just me.

I have had SOME success with other providers (one in the Netherlands, as well as Harrop's own business when it was in operation) but not nearly to the level of OpenBiome. I'm very eager to figure out what was the difference--variables that MIGHT be at play were finer filtration at OpenBiome (330 um mesh size, as per here: https://pmc.ncbi.nlm.nih.gov/articles/PMC8082449/) compared to the others (kitchen strainer or whole stool), as well as vancomycin pre-treatment for the OpenBiome FMT (which was necessary given the C. diff). The ASU study used vancomycin pre-treatment and used standardized stool provided by the successor to OpenBiome, which likely used similar methods.

1 hour ago, SFBayFMT5 said:

He had great but temporary success with two donors early in his journey of FMT trials. More recent donors he has found have been less effective, which he attributes to poor donor quality. A large part of donor quality in his experience is stool type (i.e. #4 on the Bristol scale), however this by itself is apparently not sufficient. He can elaborate on the other criteria more if he likes--I've been trying to get him to pin these down better because as you have observed, these seem like a "moving target" that would be difficult for a study coordinator to outline in a proposal.

I also had dramatic--albeit temporary--success with a FMT, from OpenBiome. The purpose was ostensibly C. diff, as I had recurrent C. diff at the time--but the most dramatic benefits were for things that had been going on MUCH longer than the C. diff. It greatly improved a whole constellation of neuropsychiatric and digestive issues that were all part of "post-Lyme disease"--I.e. that I'd attributed to continuing inflammation following treatment for a (laboratory confirmed by the ELISA/Western blot combo) case of Lyme disease, but that appear to have actually resulted from a disrupted gut microbiome. Others who have been through the grueling Lyme antibiotic regimen (after seeing doctors, out of desperation, who promote treatment much longer than is wise) have reported similar abrupt gains from FMT, it's not just me.

I have had SOME success with other providers (one in the Netherlands, as well as Harrop's own business when it was in operation) but not nearly to the level of OpenBiome. I'm very eager to figure out what was the difference--variables that MIGHT be at play were finer filtration at OpenBiome (330 um mesh size, as per here: https://pmc.ncbi.nlm.nih.gov/articles/PMC8082449/) compared to the others (kitchen strainer or whole stool), as well as vancomycin pre-treatment for the OpenBiome FMT (which was necessary given the C. diff). The ASU study used vancomycin pre-treatment and used standardized stool provided by the successor to OpenBiome, which likely used similar methods.

I think that description of especially the temporary relief is emblematic for the challenges of FMT. I think it is a bit misguided to think in terms of a good or bad donors exclusively. Rather the question in my mind is matching the right type of donor with the right type of recipient. It is already not trivial to ensure reliable short-term benefits, but there clearly will also be compatibility challenges between the gut environment of individual recipients and the what potentially and what is put into them. The big issue is that the gut flora is highly dynamic to begin with, of course. Obviously, FMT will create short-term changes and those will in somewhat unpredictable ways modulate immune responses, so they are quite likely to impact for example inflammation responses. However, whether those responses are able to provide relief (beyond placebo treatment, which is yet another interesting approach) will highly depend on the individual.

In short, from a microbiological perspective I think we need a better understanding of the functionality and dynamics of the human gut microbiome so that we can actually make better classification (beyond what is currently done) and also improve our understanding of host-pathogen interactions. This would ultimately allows us to make better functional predictions. But again, this type of research is a bit tricky and does not satisfy the immediate desire for better treatments.

Just as a minor follow-up to the above, where I wrote:

1 hour ago, SFBayFMT5 said:

I've been trying to get him to pin these down better because as you have observed, these seem like a "moving target" that would be difficult for a study coordinator to outline in a proposal.

good donor criteria will obviously be something that gets refined as more work is done (and more people report their experiences with various donors; that's one thing Harrop has been VERY good about doing--maintaining a community for recipient feedback and a spreadsheet of recipient results). A hypothesis that cannot be adjusted in light of new data is not science, it's faith. However, that being said, when attributing failures of previous studies to "low donor quality", it is important to have a working definition of "poor donor quality" that is clearly laid out enough, such that a researcher who took part in one of those studies can actually independently assess where they stand along this "axis" without needing to leave everything up to the subjective judgment of the person (e.g. Harrop) doing the alleging.

18 minutes ago, CharonY said:

I think that description of especially the temporary relief is emblematic for the challenges of FMT.

FWIW, in my particular case I suspect it was a small amount of cannabis use at about the 6-week mark. It was a small amount, less than amounts I had previously consumed on many occasions without noticeable long-term effects, though it was a new strain that had been given to me by another Lyme patient who said that it had been specially bred to be helpful with neuropathy by a grower he knows, and said Lyme patient friend said it was unusually potent for him. I can't be sure this was the trigger, but the chronic diarrhea that had been completely gone ever since the very first post-FMT bowel movement suddenly came back about an hour after this. The other gains started reversing 4 days later, despite me having continued to improve for 6 weeks straight after the FMT (with no further treatment). In fact, my greatest gains were at the end of the 5th week. So I was certainly in a vulnerable state of flux, and immune cells do express cannabinoid receptors so it's plausible. It will take finding another donor who gives me that sort of gain again to test whether it lasts longer if I DON'T do this.

In the case of Harrop, unlike myself who received everything as one bolus treatment, he did continuous treatment and the donors who were effective for him stopped donating a short while into the treatment, requiring he switch donors... that's when he relapsed.

18 minutes ago, CharonY said:

I think it is a bit misguided to think in terms of a good or bad donors exclusively. Rather the question in my mind is matching the right type of donor with the right type of recipient. It is already not trivial to ensure reliable short-term benefits, but there clearly will also be compatibility challenges between the gut environment of individual recipients and the what potentially and what is put into them.

Absolutely. It is my opinion that Harrop puts too much stock in the idea of universal donors, to the point where he ignores potentially meaningful information about different clusters of recipients. For example recipient sex... there are a number of people who reported on a patient forum getting worse (i.e. picking up new conditions) after FMTs from OpenBiome, and interestingly, all of the ones we know about were women. It was either 5 or 6 recipients, so that's a 1/32 to a 1/64 probability of happening by chance. It's possible that some were encouraged to report these by seeing the experiences of the other women, in a way that wouldn't have happened had they been male, but it's potentially something to actually look into. Especially considering that I'm male myself, and there is one other patient I know of who had success with OpenBiome but no other source that he tried--he's male also. Given that with OpenBiome nobody knows who got which donor (this is kept strictly confidential) and these experiences spanned years, it seems more likely that if there IS a recipient sex effect that it is an to do with their methods (e.g. the type of filtration) as opposed to a donor issue.

Harrop seems totally uninterested in these types of correlations, he's obviously trying to come up with one donor quality scale for everyone, whether they have Crohn's disease, diabetes, or autism, which seems as though it's unlikely to pan out. He's posting all the experiences anyone has shared across the web publicly though, so anyone else can come to their own conclusions. Of course this isn't a controlled experiment--nobody is randomizing patients to donors (or if they ARE, like OpenBiome, the recipients cannot report it).

If there's any hint of clustering I pick up in patterns of response to gut treatments (aside from things like the OpenBiome adverse events being so far unique to female recipients), it relates to people who improve on high-fiber plant-based diets versus those whose symptoms are aggravated by these, but it's too early to tell how robust this separation is.

On 7/23/2025 at 2:15 PM, CharonY said:

you [..] are effectively muddying the waters essentially because you do not seem to read things properly (neither the posts nor your sources, for that matter).

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.

21 hours ago, exchemist said:

Yet nowhere in this lengthy response do you state why you think FMT might cure or alleviate CFS/ME

18 hours ago, exchemist said:

@Michael Harrop seems convinced there is potential for CFS/ME, though he has yet to explain why

That's not true. Re-read my response.

21 hours ago, exchemist said:

You evidently have some detailed thoughts on the subject, since for example you speak of the importance of “high quality” donors. What does that mean? What defines high quality in this context? And so on.

I previously responded to that as well.

19 hours ago, studiot said:

So please answer the question I asked.

How will this new regime force the medical suppliers to do anything ?

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.

19 hours ago, studiot said:

It was rather rude to dismiss my example in such a way since those who directly suffered (and in some cases have died) when their voice (or letter) was silenced.

I guess you're referring to the following quote?

There are quite a few well established drugs and treatments that the manufacturers have declined or ceased to make simply because it is not profitable enough.

If so, I didn't respond directly to that because it seems largely unrelated.

16 hours ago, studiot said:

But promoting this issue by conventional methods doesn't seem to gain as much traction as social media pressure (groups) these days.

I would be delighted if people with the know-how would help launch such campaigns. I lack that expertise.

14 hours ago, exchemist said:

Pretty hard to argue people are dying due to lack of funding for faecal transplants

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.

3 hours ago, CharonY said:

Rather the question in my mind is matching the right type of donor with the right type of recipient

I've covered this extensively in various places. Here's a relevant quote from https://humanmicrobiome.info/fmt/#screening

There is a large amount of evidence (in this wiki) that donor quality (rather than compatibility) is the #1 factor. But of course each donor (and recipient) is very unique and thus some donors would have certain microbes needed to treat certain conditions/individuals, while others do not. And naturally there would be varying results when transplanting one unique microbiome into another. I compared it here to a jigsaw puzzle.

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.

4 hours ago, SFBayFMT5 said:

For example recipient sex... there are a number of people who reported on a patient forum getting worse (i.e. picking up new conditions) after FMTs from OpenBiome, and interestingly, all of the ones we know about were women

I already responded to that: https://forum.humanmicrobiome.info/threads/numerous-severe-adverse-outcomes-from-openbiome-fmt.880/

I shared the links with @SFBayFMT5 and he pointed out that they are all women. I said I think it's just a coincidence since the current evidence supports universal donors, does not support donor-matching for sex, and does not show that women experience a greater rate of adverse events. https://humanmicrobiome.info/fmt/

4 hours ago, SFBayFMT5 said:

Harrop seems totally uninterested in these types of correlations

That is not the case. The facts are that it's unsupported by the evidence.

4 hours ago, SFBayFMT5 said:

he's obviously trying to come up with one donor quality scale for everyone

I am not. I'm going where the evidence takes me.

10 hours ago, CharonY said:

Sorry, lab lingo- yes tetracycline. One of the reasons is its wide use in agriculture to promote growth.

OK thanks. I wondered whether it was something to do with agricultural use.

9 hours ago, SFBayFMT5 said:

He had great but temporary success with two donors early in his journey of FMT trials. More recent donors he has found have been less effective, which he attributes to poor donor quality. A large part of donor quality in his experience is stool type (i.e. #4 on the Bristol scale), however this by itself is apparently not sufficient. He can elaborate on the other criteria more if he likes--I've been trying to get him to pin these down better because as you have observed, these seem like a "moving target" that would be difficult for a study coordinator to outline in a proposal.

I also had dramatic--albeit temporary--success with a FMT, from OpenBiome. The purpose was ostensibly C. diff, as I had recurrent C. diff at the time--but the most dramatic benefits were for things that had been going on MUCH longer than the C. diff. It greatly improved a whole constellation of neuropsychiatric and digestive issues that were all part of "post-Lyme disease"--I.e. that I'd attributed to continuing inflammation following treatment for a (laboratory confirmed by the ELISA/Western blot combo) case of Lyme disease, but that appear to have actually resulted from a disrupted gut microbiome. Others who have been through the grueling Lyme antibiotic regimen (after seeing doctors, out of desperation, who promote treatment much longer than is wise) have reported similar abrupt gains from FMT, it's not just me.

I have had SOME success with other providers (one in the Netherlands, as well as Harrop's own business when it was in operation) but not nearly to the level of OpenBiome. I'm very eager to figure out what was the difference--variables that MIGHT be at play were finer filtration at OpenBiome (330 um mesh size, as per here: https://pmc.ncbi.nlm.nih.gov/articles/PMC8082449/) compared to the others (kitchen strainer or whole stool), as well as vancomycin pre-treatment for the OpenBiome FMT (which was necessary given the C. diff). The ASU study used vancomycin pre-treatment and used standardized stool provided by the successor to OpenBiome, which likely used similar methods.

Evidently you know Michael Harrop, then. You have already provided more detail on the reasons for his conviction that FMT will help than he has, in 3 pages of this thread. Thanks for this.

What bothers me now is that you say you obtained FMT from Harrop's "own business, when it was in operation". This gives me the queasy feeling that he has tried to make a business out of providing FMT and went bust, which puts his appeals for support on this forum in a new and not entirely favourable light.

I can't speak for others but I am very cagey indeed about supporting alternative quasi-medical enterprises, especially if the aim is to turn a profit. If he is, or has been, dabbling, without medical training, in providing medical treatment to others, then I would disapprove of that very strongly indeed.

P.S. Just found this on the web: https://www.humanmicrobes.org/about

Harrop does not seem to have been up front with us about this.

Edited July 25Jul 25 by exchemist

@exchemist

As far as I know (being a sporadic lurker on his forum), Harrop's business was only operational for a short time while he's been interested in gut microbiome research and FMT for well over a decade and active online for a simialr period of time. IMHO if he wanted to get rich quick, selling magical amulets would be a better choice. Even penis enlargement pills would be a better investment. And again, a scientific forum is one of the worst places on the internet to sell anything.

My personal inerest in gut microbiome is due to it's potential impact on mental health and cognition, both of which I'd like to improve, I'm physically healthy otherwise (other than being visually impaired since birth due to Retinopathy of Prematurity).

Edited July 25Jul 25 by Otto Kretschmer

38 minutes ago, Otto Kretschmer said:

@exchemist

As far as I know (being a sporadic lurker on his forum), Harrop's business was only operational for a short time while he's been interested in gut microbiome research and FMT for well over a decade and active online for a simialr period of time. IMHO if he wanted to get rich quick, selling magical amulets would be a better choice. Even penis enlargement pills would be a better investment. And again, a scientific forum is one of the worst places on the internet to sell anything.

My personal inerest in gut microbiome is due to it's potential impact on mental health and cognition, both of which I'd like to improve, I'm physically healthy otherwise (other than being visually impaired since birth due to Retinopathy of Prematurity).

It is my firm view that people without medical training should not dabble in offering medical therapies to others, whether profit-making or on a charitable basis. I just think it is dangerous.

3 hours ago, exchemist said:

Evidently you know Michael Harrop, then

Sockpuppet account strikes me as more likely, but I digress...

25 minutes ago, iNow said:

Sockpuppet account strikes me as more likely, but I digress...

He is another member from Harrop's forum (Human Microbiome Community Forum) who joined on his own initiative. I visit that forum as well from time to time mostly to check gut microbiome-related research articles posted there.

You can check that forum yourself - no products are being marketed there by Harrop or at least I am not aware of any.

Edited July 25Jul 25 by Otto Kretschmer

I see. Thx. So "groupie" not "sock puppet." 🤩

12 hours ago, exchemist said:

Evidently you know Michael Harrop, then. You have already provided more detail on the reasons for his conviction that FMT will help than he has, in 3 pages of this thread. Thanks for this.

He's far from good at being concise and to the point, as you will quickly learn if you read any of the wiki on the human microbiome forum (all of which he wrote). He has a write-up of detailed reports of his results with all the donors he's tried--over ten pages of information--and even after reading it closely, I couldn't have told which were the donors who most helped him without asking him directly. And you can't even get to the actual case reports without scrolling through over a page of rants about the current state of college athletics, political candidates, and such. Granted, one of the consequences I've experienced due to a disrupted microbiome is an ADHD-like extreme difficulty with focusing at times. I'm wondering if he has some of this.

Possibly because some others have mentioned about this to him, in this thread he seems to have been significantly more committed to staying brief. Unfortunately, it seems he is doing this by leaving out key information/details (like why and how he got into this in the first place, and what experience he has that backs up what he says), rather than giving JUST that information without so much "fluff".

His heart is definitely in the right place, wanting to get FMT to everyone who could benefit from it--but he needs help communicating effectively with politicians, philanthropists, and even possibly with potential donors (the first donor who most helped him was a real-life acquaintance--he later switched to social media and the quality of donors he attracts there has been lower). Not only is he a lone voice, as I said above, communication is not his strong point. Unfortunately I'm not the person to do so--not only am I also sick, I'm on the autism spectrum and therefore building social bridges is not my strength. I can interpret the biochemistry and microbiology of scientific papers, but winning over supporters is not something I'm adept at.

12 hours ago, exchemist said:

What bothers me now is that you say you obtained FMT from Harrop's "own business, when it was in operation". This gives me the queasy feeling that he has tried to make a business out of providing FMT and went bust, which puts his appeals for support on this forum in a new and not entirely favourable light.

It's not like there are many options for those of us with microbiome problems, who have realized that conventional medicine can't help us but FMT can. And yes--I realize the irony of the fact that the first FMT I got was through my gastroenterologist. However, it was only by the "luck" of getting the C. diff that this was possible.

9 hours ago, Otto Kretschmer said:

He is another member from Harrop's forum (Human Microbiome Community Forum) who joined on his own initiative. I visit that forum as well from time to time mostly to check gut microbiome-related research articles posted there.

You can check that forum yourself - no products are being marketed there by Harrop or at least I am not aware of any.

Yeah definitely NOT an alt account lol. We tolerate each other passably on the other forum, that's about it. I go there to read other patients' experiences and occasionally to see if any interesting papers have been linked to. And Kretschmer is correct, he doesn't offer anything for sale in that other forum. It WAS connected with Harrop's business in that he had a special section of recipient reports just for customers of his business, but anyone can (and many have, including myself) posted experience reports from other providers in the general report section of the forum.

Edited July 25Jul 25 by SFBayFMT5

17 hours ago, exchemist said:

Evidently you know Michael Harrop, then. You have already provided more detail on the reasons for his conviction that FMT will help than he has, in 3 pages of this thread. Thanks for this.

Harrop does not seem to have been up front with us about this.

Another comment from someone who didn't bother to read any of the information they were given.

14 hours ago, exchemist said:

It is my firm view that people without medical training should not dabble in offering medical therapies to others, whether profit-making or on a charitable basis. I just think it is dangerous.

Why don't you read the information you were given, and then tell us your opinion of what I should have done differently.

13 hours ago, iNow said:

Sockpuppet account strikes me as more likely, but I digress...

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.

4 hours ago, SFBayFMT5 said:

It WAS connected with Harrop's business in that he had a special section of recipient reports just for customers of his business

This is not true.

2 hours ago, Michael Harrop said:

he's a member of the microbiome forum that has been referenced and quoted, and came here from there.

Yes, because people on the internet never lie nor pretend to be something they’ve not

I have to let this thread go. Mainly for the lack of randomized double blind clinical trials in an area of medicine where this would seem to be essential. Especially given the strong connections between gut function and mental states - a lot of what goes on in the Wild West of microbiota research just screams placebo to me.

1 hour ago, iNow said:

Yes, because people on the internet never lie nor pretend to be something they’ve not

Oh Jesus...

Here is Michael's account on the forum created July 6, 2023, he is the forum admin: https://forum.humanmicrobiome.info/members/michael-harrop.3

And here is SFBayFMT5, joined April 23, 2024: https://forum.humanmicrobiome.info/members/sfbayfmt5.641

They are clearly separate human beings, unless you think Michael created a sockpuppet account on his own forum to debate with himself, and in that case the burden of proof is on you.

Ok.... so here's in a nutshell the history of Harrop and FMT:

-He developed IBS and ME/CFS (I think sometime in the early 2010s but I'm not sure)

-He did the standard treatment with Xifaxan (rifaximin) for IBS, which actually made his IBS worse if anything. He also tried several probiotics, one in particular of which was soil-based and caused considerable, permanent worsening.

-Realizing that the only option that remained to fix his microbiome was FMT, he began looking for sources. This was around the year 2016.

-Somewhere around that time, he started working for Microbioma, a provider of FMTs based in Asturias, Spain (though he was in the US). He believed that their donor screening wasn't rigorous enough, and also had some sort of disagreement with the owner over pricing and or/salary, if what I've heard is true, so he left them without having ever tried their product (which he could have done for free as an employee of theirs).

- He asked a healthy acquaintance to be his first donor--an active teenager living somewhere near him. Her stool caused a dramatic improvement; however, she became unwilling to donate partway through the treatment, requiring him to use another donor, who wasn't effective.

-Three donors later, he found another effective one, a college-age female athlete. However again, this donor backed out partway through the treatment.

-He has tried at least 10 donors since then, and only two provided significant improvement. He was able to use these two donors for an extended period of time, and yet they were not as effective as the 1st and 4th were after just one dose.

-Through his experiences at Microbioma and testing his own donors, Harrop has concluded that a number of important factors have been overlooked by all other FMT providers and organizers of clinical trials. Foremost among these is stool consistency, which he has deduced must be uniformly firm for an effective donor (i.e. not fluctuating). He also believes that antibiotic use needs to be excluded for longer into the past than most screening procedures for FMT do. He has noticed differences even between different stools from the same donor, though it's unclear how big a difference this really makes, as it was clearly insufficient to make later donors effective in the way that #1 and #4 were.

-Over the years, Harrop has interviewed many thousands of donors (he claims "a million", but nobody knows how far most of these got, i.e. if many were just people he emailed and got no response from). Despite this, he claims that there were characteristics shared by the 1st and 4th donor that have been absent in all subsequent prospective donors. This has understandably led to incredible frustration.

-During this time, he was selling FMTs to other patients. The way this worked was by acting as a liaison between the patients and the donors--he did not prepare the FMTs himself. Due to lack of funds (he's disabled and poor), he used the meager profit from this to help defray the cost of doing bloodwork and stool testing for new donors. Even so, despite having a list with tens of theoretically available donors, at any one time only 2-3 of these were actually tested and thus safe to order from. Importantly, those two donors who were actually curative for Harrop were never available to his customers, and so we have no data on how well they would have worked for anyone else. None.

-To top it off, the final straw was that in the first half of 2025, the FDA demanded that he shut down. That is what he's protesting at this point.

Ok so the good:

Harrop put in a tremendous amount of work, while disabled himself, to recruit and screen donors and test them himself in order to identify criteria that made a difference, and made an effort to compile a spreadsheet of recipients' results from the donors whose stool he sold. This is very different from, e.g. OpenBiome, where no patients have a clue if they received the same donor as another patient who got a certain benefit or side effect.

The bad:

The first part of this is not Harrop's fault--the fact that he was unable to find another donor like those two who helped him early on, even before the FDA shut him down. But it means that the FDA allowing him to operate again wouldn't really solve the problem in and of itself. Something that IS in Harrop's control, though, is that nobody really knows what it would entail for another donor to be "like the effective ones". Whether Harrop is withholding the details as a sort of trade secret of his, or whether he doesn't actually have a clear idea himself, nobody can realistically assess the rarity of such donors in the population without him spelling out what exactly the criteria are. While he definitely could use help, sometimes he comes across as "just give me enough money and I'll find one", which understandably nobody is likely to respond to.

A second outpoint is the way he paints his organization. He has on several occasions claimed that he has "the most effective FMT donors" of all the sources available. However, there is no tidal wave of people saying that they tried other providers without improving, and then found Harrop's business and all got cured--not even on Harrop's own forum, let alone any other forums out there. And Harrop himself has only tried one other provider--a clinic in Florida that ended up having one of the later two donors who came closest to replicating his #1 and #4. Among people I know about (including myself) who HAVE been able to compare Harrop's FMTs with other suppliers' FMTs by firsthand experience, we have found that his FMTs are roughly comparable to what you get elsewhere on average (with, as already said, OpenBiome standing out as the clear winner so far for me). In many ways that's remarkable given that he was operating out of a P.O. box with no lab space, but still, it's important that he doesn't imply that his business should receive special treatment, which some of his early writings to Congress bordered on doing.

Harrop has even claimed at times to be "the world expert on FMT" or to have "solved the donor selection problem". The latter overlooks the fact that even if he were 100% correct in judging who would be an effective donor for himself, and even if that translated into effectiveness for other patients (which, as I said, would need to be taken completely on faith, as neither of his curative donors were ever available to anyone else to test), he has NOT solved the problem of how to FIND these donors.

Most importantly, this kind of overclaiming is completely unnecessary, as it is an undisputed fact that there are patients like myself, with a history of dramatic response to a FMT, who have no way to re-treat with the same donor, as there is no compassionate use clause or similar to allow this. That alone means that there is need for change in this area--the question is how people like Harrop need to communicate the need to those in their power to change things.

7 hours ago, Otto Kretschmer said:

Oh Jesus...

Here is Michael's account on the forum

Thanks. My point remains valid. Appreciate the neg rep tho

15 hours ago, SFBayFMT5 said:

He's far from good at being concise and to the point, as you will quickly learn if you read any of the wiki on the human microbiome forum (all of which he wrote). He has a write-up of detailed reports of his results with all the donors he's tried--over ten pages of information--and even after reading it closely, I couldn't have told which were the donors who most helped him without asking him directly. And you can't even get to the actual case reports without scrolling through over a page of rants about the current state of college athletics, political candidates, and such. Granted, one of the consequences I've experienced due to a disrupted microbiome is an ADHD-like extreme difficulty with focusing at times. I'm wondering if he has some of this.

Possibly because some others have mentioned about this to him, in this thread he seems to have been significantly more committed to staying brief. Unfortunately, it seems he is doing this by leaving out key information/details (like why and how he got into this in the first place, and what experience he has that backs up what he says), rather than giving JUST that information without so much "fluff".

His heart is definitely in the right place, wanting to get FMT to everyone who could benefit from it--but he needs help communicating effectively with politicians, philanthropists, and even possibly with potential donors (the first donor who most helped him was a real-life acquaintance--he later switched to social media and the quality of donors he attracts there has been lower). Not only is he a lone voice, as I said above, communication is not his strong point. Unfortunately I'm not the person to do so--not only am I also sick, I'm on the autism spectrum and therefore building social bridges is not my strength. I can interpret the biochemistry and microbiology of scientific papers, but winning over supporters is not something I'm adept at.

It's not like there are many options for those of us with microbiome problems, who have realized that conventional medicine can't help us but FMT can. And yes--I realize the irony of the fact that the first FMT I got was through my gastroenterologist. However, it was only by the "luck" of getting the C. diff that this was possible.

Yeah definitely NOT an alt account lol. We tolerate each other passably on the other forum, that's about it. I go there to read other patients' experiences and occasionally to see if any interesting papers have been linked to. And Kretschmer is correct, he doesn't offer anything for sale in that other forum. It WAS connected with Harrop's business in that he had a special section of recipient reports just for customers of his business, but anyone can (and many have, including myself) posted experience reports from other providers in the general report section of the forum.

Thanks again, I appreciate the clarity you are bringing to the background to this thread subject.

Everything you have said here reinforces my view that Harrop has not been straight with us about his background and motives, that he has an evangelising agenda not supported by the science and that he has been doing things he should not be doing without, at the very least, oversight from a gastroenterologist.

But as so often I've learned something here: that there is an unregulated trade in stool samples going on, among people who are medically unqualified.

Edited July 26Jul 26 by exchemist

25 minutes ago, exchemist said:

Thanks again, I appreciate the clarity you are bringing to the background to this thread subject.

Everything you have said here reinforces my view that Harrop has not been straight with us about his background and motives, that he has an evangelising agenda not supported by the science and that he has been doing things he should not be doing without, at the very least, oversight from a gastroenterologist.

But as so often I've learned something here: that there is an unregulated trade in stool samples going on, among people who are medically unqualified.

Harrop's main point is not to make FMT available right now for everyone as some kind of super treatment but to make researchers use better donors in trials, with @SFBayFMT5 pointing out the caveeats of his approach.

10 minutes ago, Otto Kretschmer said:

Harrop's main point is not to make FMT available right now for everyone as some kind of super treatment but to make researchers use better donors in trials, with @SFBayFMT5 pointing out the caveeats of his approach.

But Harrop represented himself as an individual down on his luck, living in his car and "sentenced to a slow death" due to lack of timely access to FMT to fix his CFS. Whereas in fact he has been running a dangerous business trading stool samples without appropriate medical oversight and promoting excessive claims for the utility of this largely unproven therapy. And he wants us all to join in his crusade.

As for donor quality, to judge by the comments of @SFBayFMT5 Harrop does not have much idea of what constitutes an appropriate donor for a particular case - unsurprising as he has no medical training.

If he wants to go about this the right way, he should team up with a gastroenterologist with a research interest in this area and do some proper scientific work, with a professional safety net for the participants in any trials.