To elaborate since I cannot edit posts for some reason:

If I had ulterior motives and wanted to sell a book or supplements (what is the evidence BTW?), I would have found a much better place to promote them than a small science-related forum full of highly skeptical people. I would have opted for some alternate medicine-, wellness- or even bodybuilding-related forum or subreddit, preferably one where broscience is strong. This forum seems like a very crappy (yes...) place for marketing anything.

I am not active anywhere on the web except here, Reddit and one alt history forum. Science is not even my primary area of interest, it was one when I was a teen (and it was mostly space stuff and evolution, not medicine) but not now.

Edited July 22Jul 22 by Otto Kretschmer

12 minutes ago, Otto Kretschmer said:

If I wanted to sell a book or supplements (what is the evidence BTW?), I would have found a much better place to promote them than a small science-related forum full of highly skeptical people. I would have opted for some alternate medicine-, wellness- or even bodybuilding-related forum or subreddit, preferably one where broscience is strong. This forum seems like a very crappy (yes...) place for marketing anything.

Let me repeat what a lot of people have been telling you quite frankly. You seem to have very "pushy" language with the "lets all listen to @Michael Harrop , it would sound like you are trying to push an agenda as @Phi for All noted. Also, the skepticism is not unfounded, even myself came to a similar conclusion as they did.

Now I suggest we all return back to topic, this seems like an interesting thread and I would hate to see it get closed.

9 hours ago, Otto Kretschmer said:

I highly suggest everyone reads the content of the links included in the OP before posting: That's what @Michael Harrop expects everybody to do.

Moderator Note

That’s contrary to how this site operates. This is a discussion forum, and the rules say material for discussion must be posted here.

17 hours ago, Michael Harrop said:

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.

So your focus should be distilling the issue to the point where people can understand the situation and the implications of inaction. Much like with many other issues.

2 hours ago, Otto Kretschmer said:

To elaborate since I cannot edit posts for some reason:

If I had ulterior motives and wanted to sell a book or supplements (what is the evidence BTW?), I would have found a much better place to promote them than a small science-related forum full of highly skeptical people. I would have opted for some alternate medicine-, wellness- or even bodybuilding-related forum or subreddit, preferably one where broscience is strong. This forum seems like a very crappy (yes...) place for marketing anything.

I am not active anywhere on the web except here, Reddit and one alt history forum. Science is not even my primary area of interest, it was one when I was a teen (and it was mostly space stuff and evolution, not medicine) but not now.

While I have some sympathy for your friend's predicament (though limited by a lack of information in the thread about what the medical condition is and why FMT might be thought to help) I must say I would sincerely hope this place is and remains a "crappy" place for marketing. That is not what it is for. It's for discussing science, in which scepticism plays an important role.

2 minutes ago, exchemist said:

While I have some sympathy for your friend's predicament (though limited by a lack of information in the thread about what the medical condition is and why FMT might be thought to help) I must say I would sincerely hope this place is and remains a "crappy" place for marketing. That is not what it is for. It's for discussing science, in which scepticism plays an important role.

He has CFS if I am not mistaken.

5 minutes ago, Otto Kretschmer said:

He has CFS if I am not mistaken.

Chronic Fatigue Syndrome, a.k.a. ME? I have a niece who suffers from that, as does the daughter of a friend.

But this is the first time I've heard that a faecal transplant is something that can help that. The only applications I was aware of are things like long term gut infections e.g. with clostridium difficile, in which a one-off reset of the gut microflora can often help the patient get out of the cycle they got into as a result of antibiotics killing everything off.

Is there research showing this can work for CFS? I'd have thought it would be something really newsworthy if there were.

This is what I found on the subject in response to a query to the British ME association:

QUOTE

There is limited research evidence indicating that changes to the gut microbiome (i.e., the bacteria and viruses that normally live quite happily inside our intestines) might have occurred in people with ME/CFS. However, this has to be regarded as no more than interesting research findings at the present time. We need more reliable and significant research in this area before we can deterime the extent of the microbiome's involvement. It is too early to conclude that any of these gut microbiota abnormalities could be diagnostic biomarkers, be involved in the causation or maintenance of symptoms, or that people with ME/CFS can effectively be treated with probiotics or faecal microbiota transplants.

The theory behind faecal microbiota transplantation (FMT) is that it can be used to restore gut bacteria back to their normal composition and diversity and so improve gut function. The process involves implanting normal or beneficial intestinal bacteria and yeasts from a healthy donor into the colon of a person where there has been evidence of harmful changes to the gut microbiota.

FMT is a highly speculative form of treatment in our current state of knowledge and there have not been any proper clinical trials to establish that FMT is a safe and effective form of treatment in ME/CFS. It is not available on the NHS and to go privately will cost quite a lot of money – in the region of £3000 according to the fees on one clinic website that I looked at – and will carry no guarantee of improvement. This is not an approach that I would want to endorse or recommend. And on a website for another such clinic, I could not find any medically qualified gastroenterologists – which was rather worrying.

UNQUOTE

From: https://meassociation.org.uk/medical-matters/items/microbiota-faecal-microbiota-transplantation-me-cfs/

It seems to me one has to be careful this doesn't turn out to be scammy, like ivermectin for covid. When people have debilitating long term conditions they can understandably be tempted to try unproven or even quack remedies.

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.

11 hours ago, Phi for All said:

This all feels wrong. I understand getting behind an idea, but this seems like an agenda that's being pushed on us. Who cares what Michael expects everybody to do?

Seriously, this is a science discussion forum, and we tear EVERYTHING apart to get at the reasoning and meaning behind any concept. None of the comments have been off-topic, not a single one. And trying to claim the problem is our inability to understand so we must listen to Michael is loathsome to me. Make your case, spell it out, tell us what you want us to know and we can weigh in with our own knowledge, but you started off on the wrong foot by putting Michael on some kind of pedestal. I would love to learn something from this but it feels like a setup to sell a book or some gut-related products.

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.

11 hours ago, TheVat said:

What concerns me is the notion that fecal transplant is the hill he must die on. While I might agree there are research avenues there, there is also a lot of work going on on multiple approaches to gut health - probiotics, prebiotics, FODMAP intake, hormonal regulation, elemental diet, herbal antimicrobials (for SIBO, in particular), antibiotics, prokinetic agents, and meal timing, to name a few. My training was in biology with a pre-med emphasis, later bolstered by job experience and training where I worked (for five years) with a nutritionist on getting these approaches and others to clients in direct care. So I had a chuckle when Michael said people here "lack the motivation to become well-informed on this." And I suspect @CharonY is light years beyond me, on the whole microbiology and clinical side. @StringJunky also seems well informed on this sort of topic. And we have a couple dozen more members who seem able to get up to speed rapidly on health/medical topics.

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.

11 hours ago, studiot said:

How will writing letters to a Republican Congress (or even a Democrat one if ever) make any difference ?

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.

1. RFK has made this administration focus on the chronic disease crisis: Incoming trump admin with RFK signals new start for FDA

2. 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.

10 hours ago, StringJunky said:

I feel the approach of the OPs is too focussed and unjustifiably evangelistic for the actual state of current knowledge in this area. I like this area of research, which I think is still in a high state of flux. Promoting specific therapies in that environment of uncertainty is not a good idea. It looks promising, but saying that does not mean it's practically useful now.

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.

10 hours ago, Phi for All said:

OK, so that's a bit unorthodox, and is part of what bothers me about this. If an idea is sound, why do you need "a more well known forum member" to pave the way for it? And not to be disrespectful, but you have less than 100 posts here. You're not that much more well known, so it seems even more like you have an agenda.

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.

10 hours ago, Phi for All said:

What needs to happen now is for anyone proposing this appeal to spell it out, tell us why it's so important, and to do so WITHOUT TELLING US TO CHECK THE LINKS. Members should be able to participate in discussion without going offsite or clicking links or watching videos. Forcing us to do so makes it seem like you benefit somehow from the views.

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

4 hours ago, exchemist said:

Chronic Fatigue Syndrome, a.k.a. ME? I have a niece who suffers from that, as does the daughter of a friend.

But this is the first time I've heard that a faecal transplant is something that can help that. The only applications I was aware of are things like long term gut infections e.g. with clostridium difficile, in which a one-off reset of the gut microflora can often help the patient get out of the cycle they got into as a result of antibiotics killing everything off.

Is there research showing this can work for CFS? I'd have thought it would be something really newsworthy if there were.

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.

4 hours ago, exchemist said:

This is what I found on the subject in response to a query to the British ME association:

From: https://meassociation.org.uk/medical-matters/items/microbiota-faecal-microbiota-transplantation-me-cfs/

It seems to me one has to be careful this doesn't turn out to be scammy, like ivermectin for covid. When people have debilitating long term conditions they can understandably be tempted to try unproven or even quack remedies.

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.

On 7/19/2025 at 2:34 PM, StringJunky said:

Even if you were given a FMT with a suitable profile, will your dietary habits and its composition preserve what has been put there medically in the long term?

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'm getting a notification Harrop replied to me 13 hours ago, but when I click it, it sends me to this page where the most recent reply is 21 hours ago? And he doesn't seem to have a post on this page (page two). Were posts deleted but not the notifications?

21 hours ago, exchemist said:

There is limited research evidence indicating that changes to the gut microbiome (i.e., the bacteria and viruses that normally live quite happily inside our intestines) might have occurred in people with ME/CFS. However, this has to be regarded as no more than interesting research findings at the present time. We need more reliable and significant research in this area before we can deterime the extent of the microbiome's involvement. It is too early to conclude that any of these gut microbiota abnormalities could be diagnostic biomarkers, be involved in the causation or maintenance of symptoms, or that people with ME/CFS can effectively be treated with probiotics or faecal microbiota transplants.

The theory behind faecal microbiota transplantation (FMT) is that it can be used to restore gut bacteria back to their normal composition and diversity and so improve gut function. The process involves implanting normal or beneficial intestinal bacteria and yeasts from a healthy donor into the colon of a person where there has been evidence of harmful changes to the gut microbiota.

FMT is a highly speculative form of treatment in our current state of knowledge and there have not been any proper clinical trials to establish that FMT is a safe and effective form of treatment in ME/CFS. It is not available on the NHS and to go privately will cost quite a lot of money – in the region of £3000 according to the fees on one clinic website that I looked at – and will carry no guarantee of improvement. This is not an approach that I would want to endorse or recommend. And on a website for another such clinic, I could not find any medically qualified gastroenterologists – which was rather worrying.

It seems to me one has to be careful this doesn't turn out to be scammy, like ivermectin for covid. When people have debilitating long term conditions they can understandably be tempted to try unproven or even quack remedies.

I question the validity of your source

See here for reference:

https://my.clevelandclinic.org/health/treatments/25202-fecal-transplant

https://pmc.ncbi.nlm.nih.gov/articles/PMC8034505/

Fecal Transplant | Johns Hopkins...

Fecal Transplant

A fecal transplant is a procedure that transplants healthy gut bacteria via donor stool to a patient suffering from recurring infections with Clostridium difficile.

I would not say its highly speculative, giving that it has had significant clinical trial and is in fact one of the only encouraged treatments of a C. diff infection.

Here's an example of a clinical trial they did on the efficacy of FMT: https://academic.oup.com/cid/article-abstract/80/1/52/7756590?redirectedFrom=fulltext

Perhaps your source may be outdated perchance?

Keep in mind FMT has been shown to be highly effective in treating recurrent CDI, with cure rates reported as high as 90% or more in some studies. The Food and Drug Administration (FDA) in the United States has approved two fecal microbiota products (Rebyota and Vowst) specifically for preventing the recurrence of CDI in adults who have completed antibiotic treatment.

42 minutes ago, Sohan Lalwani said:

I question the validity of your source

See here for reference:

https://my.clevelandclinic.org/health/treatments/25202-fecal-transplant

https://pmc.ncbi.nlm.nih.gov/articles/PMC8034505/

Fecal Transplant | Johns Hopkins...

Fecal Transplant

A fecal transplant is a procedure that transplants healthy gut bacteria via donor stool to a patient suffering from recurring infections with Clostridium difficile.

I would not say its highly speculative, giving that it has had significant clinical trial and is in fact one of the only encouraged treatments of a C. diff infection.

Here's an example of a clinical trial they did on the efficacy of FMT: https://academic.oup.com/cid/article-abstract/80/1/52/7756590?redirectedFrom=fulltext

Perhaps your source may be outdated perchance?

Keep in mind FMT has been shown to be highly effective in treating recurrent CDI, with cure rates reported as high as 90% or more in some studies. The Food and Drug Administration (FDA) in the United States has approved two fecal microbiota products (Rebyota and Vowst) specifically for preventing the recurrence of CDI in adults who have completed antibiotic treatment.

You are conflating different goals here and have missed exchemist's key point:

22 hours ago, exchemist said:

But this is the first time I've heard that a faecal transplant is something that can help that. The only applications I was aware of are things like long term gut infections e.g. with clostridium difficile, in which a one-off reset of the gut microflora can often help the patient get out of the cycle they got into as a result of antibiotics killing everything off.

You then proceeded to provided links that basically state that yes, it works for C. difficile infection (for reasons outlined by exchemist) but completely missed that the part you quoted was in reference to CFS.

Before questioning the validity of someone's sources one might want to read ones' own AND put it into context with the provided information.

35 minutes ago, CharonY said:

You are conflating different goals here and have missed exchemist's key point:

You then proceeded to provided links that basically state that yes, it works for C. difficile infection (for reasons outlined by exchemist) but completely missed that the part you quoted was in reference to CFS.

Before questioning the validity of someone's sources one might want to read ones' own AND put it into context with the provided information.

Thanks. I've had this joker on Ignore for a while so did not see the post in question.😃.

1 hour ago, CharonY said:

You are conflating different goals here and have missed exchemist's key point:

My intention wasn’t to conflate the two but to push back on the broader language that described FMT as “highly speculative,” which could unintentionally paint the entire treatment modality with that brush. That part seemed misleading, especially to readers unfamiliar with the difference between experimental vs. established uses.

1 hour ago, CharonY said:

one might want to read ones' own AND put it into context with the provided information.

I will remember this for the future 👍

Thank you 👍

22 minutes ago, Sohan Lalwani said:

My intention wasn’t to conflate the two but to push back on the broader language that described FMT as “highly speculative,” which could unintentionally paint the entire treatment modality with that brush. That part seemed misleading, especially to readers unfamiliar with the difference between experimental vs. established uses.

You need to read the whole sentence then. Exchemist wrote:

FMT is a highly speculative form of treatment in our current state of knowledge and there have not been any proper clinical trials to establish that FMT is a safe and effective form of treatment in ME/CFS.

Again, it states that it is highly speculative for ME/CFS and the only form that has established uses is the C. difficile example. That is using a fine brush. Extrapolating from one method to the whole field would be an example of using a broad brush.

The issue here is you claim that you have the intention of clarifying things but are effectively muddying the waters essentially because you do not seem to read things properly (neither the posts nor your sources, for that matter).

26 minutes ago, Sohan Lalwani said:

My intention wasn’t to conflate the two but to push back on the broader language that described FMT as “highly speculative,” which could unintentionally paint the entire treatment modality with that brush.

But Ex was not describing the whole of FMT as speculative - he was referring specifically to its application to chronic fatigue syndrome, which is the usage the OP was focused on. I understand your intention was good and that people misunderstand each other umpteen times per week on forums. In that spirit, I would recommend cancelling Ex's downvote (and generally wish people wouldn't use that option so much, so it's not just you). Granted, he provoked you by stating that he keeps you on Ignore.

As an old friend used to say (and aptly, for this thread): "Nobody's shit don't stink."

2 minutes ago, TheVat said:

But Ex was not describing the whole of FMT as speculative - he was referring specifically to its application to chronic fatigue syndrome, which is the usage the OP was focused on. I understand your intention was good and that people misunderstand each other umpteen times per week on forums. In that spirit, I would recommend cancelling Ex's downvote (and generally wish people wouldn't use that option so much, so it's not just you). Granted, he provoked you by stating that he keeps you on Ignore.

As an old friend used to say (and aptly, for this thread): "Nobody's shit don't stink."

Ok I removed my reaction

Apologies for being irrelevant 👍

10 minutes ago, CharonY said:

The issue here is you claim that you have the intention of clarifying things but are effectively muddying the waters essentially because you do not seem to read things properly (neither the posts nor your sources, for that matter).

Again, my intention was to “wasn’t to conflate the two but to push back on the broader language that described FMT as “highly speculative”

I already clarified it was irrelevant, please stop assuming my intention 👍

Just now, Sohan Lalwani said:

Ok I removed my reaction

Apologies for being irrelevant 👍

I think the issue is that your good intentions are not matched by the effort put in in trying to understand the discussion at hand. I think the error you are making is assuming that you need to appear knowledgeable in all topics under discussion. This is not the purpose of this forum. While folks who often have some level of understanding, we tend to hash out things collectively, in part by providing literature (which we actually have read!). Thereby we try to scope out what is known about a particular topic and ask each other questions (and sometimes there is just no clear answer).

This is also why search engines and LLMs are not loved here- they provide definitive and declarative statements which suggest some form of authority and understanding of the matter, but frequently miss the point. This almost always rubs folks the wrong way. A better way to engage in topics that one is curious about but does not know much is to ask questions and see if someone can explain things. The forum is intended for human interactions, not for showboating.

2 minutes ago, CharonY said:

I think the issue is that your good intentions are not matched by the effort put in in trying to understand the discussion at hand. I think the error you are making is assuming that you need to appear knowledgeable in all topics under discussion. This is not the purpose of this forum. While folks who often have some level of understanding, we tend to hash out things collectively, in part by providing literature (which we actually have read!). Thereby we try to scope out what is known about a particular topic and ask each other questions (and sometimes there is just no clear answer).

This is also why search engines and LLMs are not loved here- they provide definitive and declarative statements which suggest some form of authority and understanding of the matter, but frequently miss the point. This almost always rubs folks the wrong way. A better way to engage in topics that one is curious about but does not know much is to ask questions and see if someone can explain things. The forum is intended for human interactions, not for showboating.

I try to be knowledgeable to help, I’m not attempting to be a “show off.” I hope you do not think I am trying to do that, even remotely. I made an error, that’s my fault. Not really following on how this is showboating my friend. Also, since you read quite frequently there is a sentence error in your first sentence, “in” was out twice.

Why do you keep on mentioning LLM’s? Would you prefer I record me typing my responses out?

I will attempt you integrate your way of engaging to my own one for the sake of appeasement and to hopefully better my own reputation 👍

8 hours ago, TheVat said:

I'm getting a notification Harrop replied to me 13 hours ago, but when I click it, it sends me to this page where the most recent reply is 21 hours ago? And he doesn't seem to have a post on this page (page two). Were posts deleted but not the notifications?

Moderator Note

A post was hidden by the board software as possible spam (so, good news: the software is doing something!) and was being evaluated

I’m not sure of the settings, so I don’t know if it was because of the number of links, because some links were repeated, or because some were embedded in the text (we don’t like it when people do that — we’d rather see where a link is going to take us) or some admixture of the three. Coming from a new member is part of the equation, AFAICT

3 hours ago, swansont said:

Moderator Note

A post was hidden by the board software as possible spam (so, good news: the software is doing something!) and was being evaluated

That is good! I get notifications and often times I can’t respond to them because they do not appear

On 7/23/2025 at 5:24 AM, Michael Harrop said:

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.

1. RFK has made this administration focus on the chronic disease crisis: Incoming trump admin with RFK signals new start for FDA

2. 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.

Yet nowhere in this lengthy response do you state why you think FMT might cure or alleviate CFS/ME. Is there a theory for this, e.g. a proposed mechanism of action? Or are there results of trials showing significant improvement in CFS/ME sufferers following FMT?

Can we please get down to a concrete discussion of the science: the observational evidence and/or hypotheses for mode of action, specific to the treatment of CFS/ME by faecal transplants?

If you believe so strongly in its efficacy you must be able to at least give us a paragraph explaining your rationale. 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.

Edited July 24Jul 24 by exchemist

22 hours ago, Michael Harrop said:

On 7/22/2025 at 3:09 PM, studiot said:

How will writing letters to a Republican Congress (or even a Democrat one if ever) make any difference ?

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.

1. RFK has made this administration focus on the chronic disease crisis: Incoming trump admin with RFK signals new start for FDA

2. 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.

Thank you for dismissing my questions so lightly.

I am not american so I don't have first hand experience of writing to 'my' member of congress.
But if my experience of writing to my elected reprentative in the UK is anything to go by, such a letter will just be ignored.

So please answer the question I asked.

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

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.

33 minutes ago, studiot said:

Thank you for dismissing my questions so lightly.

I am not american so I don't have first hand experience of writing to 'my' member of congress.
But if my experience of writing to my elected reprentative in the UK is anything to go by, such a letter will just be ignored.

So please answer the question I asked.

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

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.

Well actually I think "medical suppliers", by which you seem to mean drug companies since you speak of profitability, are a bit beside the point here. There is no way I can see for a drug company to get involved in faecal transplanting. You need live microflora from the intestines of a donor. This will be a hospital procedure, it seems to me, with a donor chosen for each specific patient. 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.

The issue is one of establishing scientifically - I would assume through publicly funded medical research, as it is not one for the drug companies - what further conditions, beside refractory gut infections, can be successfully treated with faecal transplants.

@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.

Edited July 24Jul 24 by exchemist

Just now, exchemist said:

The issue is one of establishing scientifically - I would assume through publicly funded medical research, as it is not one for the drug companies - what further conditions, beside refractory gut infections, can be successfully treated with faecal transplants.

Really ?

Then why is the title "An appeal to help........"

and the first post states in bold,

On 7/18/2025 at 5:54 PM, Otto Kretschmer said:

his main goal is to get as many people from the US to e-mail the Congresspeople.

I am merely wondering about the effectiveness of writing to congresspeople.

Which seems to me to be a clear statement of the objective of this thread.

I have, at no point, attempted to discuss the effectiveness or otherwise of the technique as I don't know enough about it.

13 minutes ago, studiot said:

Really ?

Then why is the title "An appeal to help........"

and the first post states in bold,

I am merely wondering about the effectiveness of writing to congresspeople.

Which seems to me to be a clear statement of the objective of this thread.

I have, at no point, attempted to discuss the effectiveness or otherwise of the technique as I don't know enough about it.

OK, the discussion has been about why we should agree to do such a thing. One side of that is whether and why faecal transplants might be effectlve in the case of this person. The other, which you are focusing on, is whether writing to elected representatives is likely to produce a result. As I say, I think this is going to require publicly funded research rather than relying on drug companies. So maybe writing to elected representatives could be one way to promote that research.

Just now, exchemist said:

As I say, I think this is going to require publicly funded research rather than relying on drug companies. So maybe writing to elected representatives could be one way to promote that research.

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.