Who to contact to get an FMT clinical trial with high quality donors?

[Sophiedw]

"Their superior gut microbiome is what allows for that performance, including all the development that lead up to it."- in reference to olympic athletes.

Can that possibly be true? Surely it can also be their superior genetics supporting energy metabolism, muscle type etc etc. I don't see evidence in the wiki that every aspect of health is reliant on microbiome above all others.

Could it possibly be the case in CFS (and other conditions that see temporary improvements from some donors) that nutritional status/genetics of the individual is maintaining the microbiome. For example, there is evidence suggesting vitamin D status impacts on dysbiosis. If this is true then an individual who has severe dysbiosis and vitamin D deficiency can have an FMT, regain health for a short period of time, but without resolving the underlying vitamin D deficiency will quickly return to dysbiosis and disease state. As such even a 'super-donor; would not lead to recovery without concomitant correction of nutritional deficiency.

 

[Sophiedw]

In which case, the olympic athlete would have the superior microbiome because of their superior fitness and each would support each other in symbiotic balance. So maybe in CFS FMT can open the door and remove roadblocks to better health but without other interventions like supplementation with missing vitamins etc. will fall back to a non-optimum baseline.

 

[suevu]

In which case, the olympic athlete would have the superior microbiome because of their superior fitness and each would support each other in symbiotic balance. So maybe in CFS FMT can open the door and remove roadblocks to better health but without other interventions like supplementation with missing vitamins etc. will fall back to a non-optimum baseline.

Give me the best olympic athlete and I will turn him into a sever CFS patient with enough antibiotics.

 

[Sophiedw]

That's an interesting statement! I wonder if it's the case. But there are people who are on antibiotics for years and years aren't there? For acne and that sort of thing and they never get profoundly ill like some cfs patients. Also even if an olympic athlete did get very sick I think that would just show that microbiome were a necessary element in general wellness, not sufficient in its own right to confer wellness.

 

[suevu]

That's an interesting statement! I wonder if it's the case. But there are people who are on antibiotics for years and years aren't there? For acne and that sort of thing and they never get profoundly ill like some cfs patients. Also even if an olympic athlete did get very sick I think that would just show that microbiome were a necessary element in general wellness, not sufficient in its own right to confer wellness.

Well, I deal with a big number of patiens due to my project, and I see a general abuse of antibiotics and all the opposite, those who restore their microbiome they improve with NO EXCEPTIONS.

For me its very clear, it doesn't mean that microbiome restoraion will do it alone, but it won't do it without it for most patients. Thats why most people stay sick forever.

The microbiome is actually a necessary elmenent in general wellness. After seeing the Jennifer Brea case where here microbiome (in terms of activated virus like EBV eand similar) came back to some more normal thing after the fusion surgery, it seems that part of the boy plays a huge role in the modulation of our microbes probably by restoring some important communications between brain and gut.

 

[MaximilianKohler]

"Their superior gut microbiome is what allows for that performance, including all the development that lead up to it."- in reference to olympic athletes.

Can that possibly be true? Surely it can also be their superior genetics supporting energy metabolism, muscle type etc etc. I don't see evidence in the wiki that every aspect of health is reliant on microbiome above all others.

Could it possibly be the case in CFS (and other conditions that see temporary improvements from some donors) that nutritional status/genetics of the individual is maintaining the microbiome. For example, there is evidence suggesting vitamin D status impacts on dysbiosis. If this is true then an individual who has severe dysbiosis and vitamin D deficiency can have an FMT, regain health for a short period of time, but without resolving the underlying vitamin D deficiency will quickly return to dysbiosis and disease state. As such even a 'super-donor; would not lead to recovery without concomitant correction of nutritional deficiency.

Genetics of course plays a role. Genetics also influences the gut microbiome, and the gut microbiome influences genetic expression. Energy metabolism is largely determined by the gut microbiome. I think the wiki shows that you cannot have a healthy person without a healthy gut microbiome. You require both microbiome and genetics.

Here's one quote from it:

>"It is now clear that the gut microbiota contributes significantly to the traits of humans as much as our genes, especially in the case of atherosclerosis, hypertension, obesity, diabetes, metabolic syndrome, inflammatory bowel disease (IBD), gastrointestinal tract malignancies, hepatic encephalopathy, allergies, behavior, intelligence, autism, neurological diseases, and psychological diseases. It has also been found that alteration of the composition of the gut microbiota in its host affects the behavior, intelligence, mood, autism, psychology, and migraines of its host through the gut-brain axis." (2018): https://www.frontiersin.org/articles/10.3389/fmicb.2018.01510/full

there is evidence suggesting vitamin D status impacts on dysbiosis

There is also evidence that the gut microbiome regulates D status.

Of course nutrition has a vital role in maintaining a healthy gut microbiome.

In which case, the olympic athlete would have the superior microbiome because of their superior fitness and each would support each other in symbiotic balance. So maybe in CFS FMT can open the door and remove roadblocks to better health but without other interventions like supplementation with missing vitamins etc. will fall back to a non-optimum baseline.

Exercise does benefit the microbiome, generally (not in CFS patients). But the benefits from exercise can be transferred via FMT (see the FMT section of that wiki).

 

[suevu]

When its so clear I dont know why most people are so scared of tackling it and they prefer to waste their lives with useless drugs that only cover a few symptoms. So pity most people are so short sighted.

I could go from severe to mild-moderate, sometimes I really can have an almost normal life, helminth therapy has set me back a few months, I thought I would improve, but for some reason it has set me back several months and now i'm improving again that helminths have "taken" on me, I will continue to add more FMTs, but I think that somehow I will need to fix my cranial cervical instability as well to fully recover, but I'm worlds ahead just compareing to one year ago, many days I can walk 5 km easily with no PEM or big effort.

My case is so clear that microbiome modulation can help us recover and most likely achieve full remission, that I dont know why people keep ignoring this. I don't think I'm smarter than the rest of the people who have been with this disease for years, but there is evidence, there have been many people who have recovered and imoorved greatly with it however most people prefer useless drugs or wait for a treatment that in 50 years has not arrived and I highly doubt it will be in the next 20 at least, wasting their lives. Instead of taking action now.

So sad seeing something so clear and people looking elsewhere.

 

[Wishful]

My case is so clear that microbiome modulation can help us recover and most likely achieve full remission, that I dont know why people keep ignoring this.

The critical part of that sentence is "My case". ME is such a variable disease, and what works great for one person doesn't work on another, or even makes their ME worse. You changed your microbiome and noticed a big improvement. I've varied my diet and done other things that should have significantly altered my microbiome, but saw no changes in my symptoms. By your hypothesis, taking antibiotics should make ME symptoms much worse, but that doesn't seem to be the general observation.

My guess is that the microbiome will have a strong effect on ME symptoms for some people, but not for the majority. If someone tries something that affects the microbiome and notices an effect, they should pursue that line of experimentation. If they don't notice an effect, they're probably in the group that doesn't have a strong microbiome/ME link.

I've reported two treatments that work very well for me, and continue to work reliably...but no one else has reported any significant improvements from them. FMTs might have worked well for you, but there's no guarantee that they'll do much for anyone else's ME. That's just the reality of ME.

 

[suevu]

The critical part of that sentence is "My case". ME is such a variable disease, and what works great for one person doesn't work on another, or even makes their ME worse. You changed your microbiome and noticed a big improvement. I've varied my diet and done other things that should have significantly altered my microbiome, but saw no changes in my symptoms. By your hypothesis, taking antibiotics should make ME symptoms much worse, but that doesn't seem to be the general observation.

My guess is that the microbiome will have a strong effect on ME symptoms for some people, but not for the majority. If someone tries something that affects the microbiome and notices an effect, they should pursue that line of experimentation. If they don't notice an effect, they're probably in the group that doesn't have a strong microbiome/ME link.

I've reported two treatments that work very well for me, and continue to work reliably...but no one else has reported any significant improvements from them. FMTs might have worked well for you, but there's no guarantee that they'll do much for anyone else's ME. That's just the reality of ME.

We first must understand the importance of the microbiome in disease, not just CFS but all conditions in general.

We must also understand that all microbiotas are different, so there is no point in comparing an FMT I do from certain donor to an FMT you do from a different donor, it would be like comparing an aspirin to a painkiller, every microbiota is extremely different to another, just like blodd types there are microbiome types identified, so we first must asset some sort of compatibility and we still dont know it. Also dono quality is by far the most important issue to keep here in mind.

We lack studies, we need a large study with thousdans of TOP QUALITY DONORS and thousdans of patients to start drawing some compatibility parameters, and such thing has never been done, why? Because there is no economical incentive, nothing to patent.

You can change your microbiome with your diet, you can change the distibution but not enrich it unless you add more good microbes from a TOP donor.

But first is understanding the role of microbes before comparing it to drugs, because it has nothing to do with them. FMT is only one tool to achieve microbiome modulation, but there are more, from being in touch with the nature to helminths or wild water.

 

[Wishful]

Because there is no economical incentive, nothing to patent.

I think there would be possibilities for economic incentive. How about a program that tailors a microbe/supplement package for maximum effectiveness for a particular person? Finding information that improves a person's health via microbiome adjustment would benefit that researcher's career (and thus income). I'm sure there are other incentives out there.

Wild water? Yes, the creek going past my cabin might contain a microbe that would help, but I could also get infected with some nasty microbes, which could be really, really bad for my ME. The rainwater I drink probably has lots of microbes too, but it hasn't helped yet.

 

[JES]

It is certainly complicated. I tend to agree with @Wishful that microbiome could have a big effect in some of us, but not be the ultimate answer for others. In this story is described a woman who lives without a large intestine, which is where the majority of the good bacteria resides. Without trying to downplay her serious condition, it looks like she hasn't developed anything like ME/CFS despite having no colon.

The second case I think of is the one of Whitney Dafoe, who lost his ability to eat and was first fed intravenously and later by a tube through his stomach, if I understood it correctly. One would think that based on the microbiome changes, he would have improved/worsened after he was fed intravenously and no food was feeding his microbiome, but as far as I understood it, it made no difference to his severe condition.

Having said that, undoubtedly there is an incredible upside and potential with FMTs. It is just frustrating that there doesn't seem to be one answer that works for everyone, but on the upside, we have CCI surgeries, FMTs, Rituximab, etc. that seem to help at least some of us.

 

[MaximilianKohler]

Everything from exercise to sleep to supplements/drugs to food, etc. impacts the gut microbiome.

The reason some people see results from some things but not others is due to the individualized nature of the gut microbiome. It's not that "microbiome manipulation isn't the answer for x person" it's that "y manipulation isn't the answer for x person".

I react differently to x antibiotic than another person with CFS due to our microbiome differences. That doesn't mean that other person's CFS isn't due to gut dysbiosis.

With FMT donors there is huge heterogenity among low quality donors, but high quality donors are more universally beneficial. But high quality donors are extremely rare (fewer than 0.4% of the population).


A Grand Unified Theory of Unhealthy Microbiomes. The Anna Karenina hypothesis says that every unbalanced microbiome is unbalanced in its own way. “All happy families are alike; each unhappy family is unhappy in its own way.”

Your examples of those people having their intestines bypassed does not rule out gut dysbiosis as the cause. The gut microbiome is extremely complex and there are a wide variety of mechanisms whereby it impacts and regulates the entire body. See the link I previously shared.

In your first example, the removal of a section of the intestines simply negates any microbial activity that was occurring there. In your second example, it's likely that bypassing the intestines with nutrition wasn't enough to repair the damage/dysbiosis of the intestines.

 

[Wishful]

Your examples of those people having their intestines bypassed does not rule out gut dysbiosis as the cause.

Such examples don't rule it out 100.000%. They do put it into a category of 'it looks like dysbiosis isn't a major factor in ME'. The world doesn't work on 100.0000% vs 0.0000%; it works on probabilities. Is 'x' a likely factor in this disease? The typical answer is 'doesn't seem likely' or 'seems quite likely'. The more evidence available, the more refined the answer. It takes quite a bit of evidence before the researchers can even apply a numerical percentage to the answer.

For dysbiosis being a major factor in ME, I don't think at this point that there's enough evidence even for a vague likelihood to be stated. Anecdotal evidence from a few individuals could just be something specific to their bodies.

If you're unhappy with the resources being applied to studying the dysbiosis/ME connection, gather up all the evidence you can and try to lobby for more resources.

My personal observations about my digestive system and ME convinces me that there's no significant link...for me. Your personal observations indicate a strong link...for you. T2 and cumin have strong links with my ME, but they haven't worked for anyone else, so I'm not demanding that all research resources be immediately directed to T2 and cumin. The evidence at this point says that it's just my individual response.

If you can convince a significant number of ME victims to try microbiome alteration treatments and show strong positive statistical results, I expect that you'd get attention from the research community. A couple cases of anecdotal results probably won't. Maybe post a list of number of people who tried your suggested treatments and how much they improved?

 

[MaximilianKohler]

For dysbiosis being a major factor in ME, I don't think at this point that there's enough evidence even for a vague likelihood to be stated. Anecdotal evidence from a few individuals could just be something specific to their bodies.

That first statement is absurd, and tells me you haven't reviewed the plethora of research I cited in the OP of this post.

I am not offering anecdotal evidence as my primary citations. It's the wiki I linked in the OP with a huge amount of supporting literature, including a section on CFS.

If you're unhappy with the resources being applied to studying the dysbiosis/ME connection, gather up all the evidence you can and try to lobby for more resources.

This is exactly what I did in the OP. It seems that most people declined to review all the evidence I gathered up. And no one I've lobbied has been willing/able to do the clinical trial I'm lobbying for.

If you can convince a significant number of ME victims to try microbiome alteration treatments and show strong positive statistical results, I expect that you'd get attention from the research community. A couple cases of anecdotal results probably won't. Maybe post a list of number of people who tried your suggested treatments and how much they improved?

I tried to explain this in the last comment - virtually everything is a microbiome alteration. Certainly including cumin.

Very few people are able to find high quality FMT donors on their own. And of the few people that have, and who have either cured themselves or benefited greatly from it, not all of them have created a full post, despite my encouragement. Someone on the FMT facebook group with CFS and no "gut issues" cured herself with FMT and won't post the details. Someone on https://www.healthrising.org/forums/ did the same and did put up some details on his site. A couple others on /r/CFS have as well.

 

[suevu]

All the people I know who have used good donors for their FMT have improved WITH NO EXCEPCIONS, when I say no excecpions means no exceptions, some fully recovered, others failed, but ALL improved when the donor is good. Probalby some people like those with sever CCI or whaver, already have a phisical damage that can't be reverse only with microbes, I assume that. But in general absolutely every ME patient can benefit from long term high quality donor FMT.

The problem is that most people dont understand the concept of human and how important microbes are, we are actully microbe carriers and not the opposite as we might think, we are slaves to bacteria, you very deepest thought comes given by the amount of substances these bugs release into your blood and brain. Absolutely every disease and every condition is given to microbes. If people fail to understand this there is no point in discussing.

We should center ourselves in gathering funds and set up a TOP quality donor bank and with the best compatiblity algorithms. Its extremely difficult to find a good western donor given the amount of microbe destruction substances we have around everyday and time is running out, its not just ME, its autism, its diabetes, its many conditions that are growing at the speed of light as our microbes deplete. Hopefully we will wake up before its too late.

 

[Wishful]

That first statement is absurd, and tells me you haven't reviewed the plethora of research I cited in the OP of this post.

I skimmed it. I didn't read further because I didn't find anything to make me want to read further. I'm not sure whether it's your writing style, or the information itself, but I can easily imagine busy researchers or politicians skimming a few lines and then tossing it in the wastebasket. Maybe get someone else as a proofwriter or editor? Presentation is critical. For me, your presentation of olympic poop being a panacea (cure for everything) doesn't make me want to jump on the bandwagon. Quite the opposite.

I tried to explain this in the last comment - virtually everything is a microbiome alteration.

By the same token, virtually everything that alters the microbiome has potential to affect the body in other ways. Just because something can affect the microbiome doesn't mean that's how it is affecting the body. As an example, when LDN was blocking my muscle aches, I needed ~30% less if I took it sublingually instead of swallowing it. To me that says it was crossing into the brain directly and affecting cells there, rather than having an effect via the microbiome.

Someone on the FMT facebook group with CFS and no "gut issues" cured herself with FMT and won't post the details.

That makes me skeptical that she actually cured herself of CFS. People can make such claims, but there's no way for us to know if they really had CFS, or if the FMT was the cause of the cure or if something else she wasn't aware of was responsible.

If you could find your perfect donor, get a suitable number of people with otherwise incurable diseases (verified by medical records) to take the treatment and have a doctor verify that they're cured, then you might get some positive attention.

 

[Wishful]

@MaximilianKohler I thought I'd point out that my comments weren't meant to be insulting, but rather constructive criticism. For example, I strongly suggest avoiding using the word 'panacea' in your writing. History is full of claims of panaceas and 'this is the cause of all diseases!', and all turned out to be wrong, so any such claims will probably immediately hit the "toss in the wastebasket" button for most researchers.

Also, I find your writing to be somewhat abrasive. I came across your recent post in healthrising and compared to the other comments, it came across as: "I know THE TRUTH, and anyone who doesn't agree with me is an idiot." I don't think that's a good way to convince people. A calm, rational presentation of facts tends to work better. Also, those facts have to be presented in a way that convinces the reader that they are the result of proper scientific procedure, and not cherry-picked results of experiments designed to provide a desired result. Scientific credibility is strongly affected by presentation.

History has plenty of examples of researchers who had correct theories, but whose work was ignored for decades because of how it was presented, or because the researcher came across as arrogant, insulting or whatever.

You could try asking medical researchers to critique your presentation. They might point out why they aren't accepting your writings. It may not be your theory they are objecting to, but how it's presented.

 

[JES]

FMTs are interesting and I think there is definitely big potential in this treatment, I just have my doubts that it will ever become "THE treatment" for ME/CFS. I think we have quite strong evidence that the microbiome is altered ME/CFS and in a plethora of other diseases, but will treating the microbiome ever become the go to treatment during my lifetime, I have my doubts.

For FMTs to ever become a viable option for the masses, the pool of donors would need to grow hugely, especially since it seems results from this treatment rely a lot on getting stool from so called "super donors", which was alluded to also in this thread. Maybe the only way to get masses to donate would be to build up a system like for blood donations, which is mostly based on volunteering, where the main motivator is that "it's a good thing to do". But even then I'm afraid donating one's stool doesn't sound as sexy or as noble of an act to the average Joe as giving one's blood.

The last point that concerns me with this treatment is the fact that from my understanding, FMTs would typically have to be repeated periodically or people would tend to regress back to illness. If FMTs would work as a one or two time administration cure, it would directly point to microbiome causing the disease, but since it's not the case, it would have to be assumed that most people would need a lifetime treatment of FMTs, which means the treatment is not curative.

 

[MaximilianKohler]

microbioma.org is trying to solve the donor problem. We need more people to start spreading it in locations where "superdonors" would be. Gyms, universities, community colleges, to professional athletes if possible, etc..

Regarding having to continue doing FMTs, it might be a donor problem or it might be an issue where we're not changing the mucosal microbiome. In which case we'll have to figure out how to do that. There are a few possibilities that will hopefully be looked into soon.

 

[suevu]

it would directly point to microbiome causing the disease, but since it's not the case.

Definitely we live in two different worlds or even more, different realities.