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

[unicorn7]

I've read an article that in one study for crohn's disease, they found out that most people who got a remission, got the FMT from the same single donor! They should definitely test that in all studies in FMT and keep record of which donor helped which disease, because it could well be that there is just a perfect donor for every disease or just a perfect donor in general.

I thought I had a pretty perfect donor, but I haven't felt much effect yet from my FMT, but I'm keeping my fingers crossed

 

[Wishful]

Wouldn't a person's diet have a significant effect on both which species a donor harbours, and which species will be useful for a recipient? A sample from a healthy athletic meat-eater might not be effective for a vegetarian, and vice-versa. It seems a more complex issue than 'olympic gold winners have superior microbiomes and will be the best choice for everyone'.

Also, not all bacteria from the same species are equal, health-wise. One person's lactobacillus rhamnosus might have a gene that produces a beneficial chemical, while another lacks that, and the beneficial gene might not be the one that survives best in the recipient human's gut.

I think it will take a fairly long time for science to figure out microbiome optimization.

 

[Rufous McKinney]

so its definitely a gamble

Microdosing?

 

[MaximilianKohler]

@Wishful Those questions are answered in the wiki linked in the OP. Look at the "diet" and "FMT" sections of it. Donor diet seems to have little impact on FMT outcomes.

I have already made pretty strong hypotheses about donor quality which I linked above. It's up to a clinical trial to verify them. And that's what this thread is about. Getting that clinical trial done.

It seems a more complex issue than 'olympic gold winners have superior microbiomes and will be the best choice for everyone'.

Their superior gut microbiome is what allows for that performance, including all the development that lead up to it. When their gut microbiome takes damage their performance should drop, and their effectiveness as an FMT donor should drop. There is definitely variance between top athletes, and types of athletes (sprinter vs long distance), and it's going to take a clinical trial to figure out who's better and why.

 

[kangaSue]

I see they already offer FMT at some private hospitals here. (Volvat)
You can pay for it yourself but it's very costly for even just one round of treatment..

I have seen the prices, 1,800 euro for just ONE FMT and not even focused on CFS?
Are these people crazy?

It's available commercially for any condition at a couple of centres here in Australia too. You might have to sell a kidney to pay for it though, costs are anything from about A$6,500 to around A$15,000 for a ten treatment course

 

[kangaSue]

I've read an article that in one study for crohn's disease, they found out that most people who got a remission, got the FMT from the same single donor!

From memory, I think that the super-donor involved had a high bifidobacterium count and they put the quality difference down to that factor.

 

[Sidny]

It's available commercially for any condition at a couple of centres here in Australia too. You might have to sell a kidney to pay for it though, costs are anything from about A$6,500 to around A$15,000 for a ten treatment course

Thats absurd!! Considering as far as I’m aware, that donors get paid a measly 40 dollars or so per donation.

Thank you for your hard work @MaximilianKohler I for one strongly agree with your hypothesis and find your analysis and compilation of information on the subject fascinating. I especially enjoyed reading the article you posted on medium about childbearing. It seems after reading through your experiences with donors that they were all less than ideal to say the least so hopefully you and others have better luck finding more suitable donors soon.

I think if FMT from excellent donors becomes widely available or “open source” it could really have a significant impact for us and other chronic ailments.

 

[suevu]

Wouldn't a person's diet have a significant effect on both which species a donor harbours, and which species will be useful for a recipient? A sample from a healthy athletic meat-eater might not be effective for a vegetarian, and vice-versa. It seems a more complex issue than 'olympic gold winners have superior microbiomes and will be the best choice for everyone'.

Also, not all bacteria from the same species are equal, health-wise. One person's lactobacillus rhamnosus might have a gene that produces a beneficial chemical, while another lacks that, and the beneficial gene might not be the one that survives best in the recipient human's gut.

I think it will take a fairly long time for science to figure out microbiome optimization.

I agree, and that's the purpose of our project: Microbiome optimization: the best donor for every single patient.

 

[Hip]

@MaximilianKohler, did you ever read this article about a patient who cured her ME/CFS by taking super-high doses of probiotics (ie, 300 billion CFUs daily). Might be something to explore in addition to FMT.

 

[Haso]

hip that is interesting have you explored that more or tested it?

 

[Hip]

hip that is interesting have you explored that more or tested it?

I tried it myself, but these super-high doses of probiotics did not help in my case.

 

[suevu]

I tried it myself, but these super-high doses of probiotics did not help in my case.

What probiotics?

SAying probiotics is like saying "drugs". You can take many drugs and they will not help, but what drugs?

There are actually more probiotic strains than drugs in the world, so go figure what we need

I really believe FMT from good compatible or needed donors is the way to go, by my own experience I have been able to go fromo sever to mild-moderate with it. But the donor is not good enough.

 

[Hip]

What probiotics?

See the article.

 

[MaximilianKohler]

@MaximilianKohler, did you ever read this article about a patient who cured her ME/CFS by taking super-high doses of probiotics (ie, 300 billion CFUs daily). Might be something to explore in addition to FMT.

The disclaimer at the top is accurate - can work for some and harm others.

A large dose of multistrain probiotics would serve to disrupt the current balance. If that disruption dislodges a problematic microbe(s) then you'd see benefits. I have experimented with this kind of thing myself. It's generally been harmful. In my case I think I'm primarily missing microbes, so a disruption isn't what I need. And even though I probably have some pathogens, large doses of many probiotics doesn't seem to dislodge them. I seem to require an immune trigger/stimulation - something that high quality FMT donors have been able to do, and once the Gardasil vaccine did.

I have recently discovered that the benefits from this probiotic combo comes when I take it while fasting (3 days, orange juice). Otherwise, components of it are harmful.

 

[kangaSue]

I've read an article that in one study for crohn's disease, they found out that most people who got a remission, got the FMT from the same single donor!

I mentioned I thought that the donor involved had a bifidobacterium rich stool. That was actually the case in a different IBS study.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637308/

It was interesting that in one UC study, the super-donor's stool when added to a pooled multi donor stool sample drew a better response than a pooled donor stool without their sample included.
https://www.frontiersin.org/articles/10.3389/fcimb.2019.00002/full The Super-Donor Phenomenon in Fecal Microbiota Transplantation;
[Specifically, patients that received FMT batches that contained stool from this one donor exhibited a higher remission rate than those whose FMT batches did not include the super-donor (37 vs. 18%, respectively)]

 

[suevu]

I mentioned I thought that the donor involved had a bifidobacterium rich stool. That was actually the case in a different IBS study.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5637308/

It was interesting that in one UC study, the super-donor's stool when added to a pooled multi donor stool sample drew a better response than a pooled donor stool without their sample included.
https://www.frontiersin.org/articles/10.3389/fcimb.2019.00002/full The Super-Donor Phenomenon in Fecal Microbiota Transplantation;
[Specifically, patients that received FMT batches that contained stool from this one donor exhibited a higher remission rate than those whose FMT batches did not include the super-donor (37 vs. 18%, respectively)]

And what's the outcome difference between super donor only and pooled super donor?

 

[Sidny]

The disclaimer at the top is accurate - can work for some and harm others.

A large dose of multistrain probiotics would serve to disrupt the current balance. If that disruption dislodges a problematic microbe(s) then you'd see benefits. I have experimented with this kind of thing myself. It's generally been harmful. In my case I think I'm primarily missing microbes, so a disruption isn't what I need. And even though I probably have some pathogens, large doses of many probiotics doesn't seem to dislodge them. I seem to require an immune trigger/stimulation - something that high quality FMT donors have been able to do, and once the Gardasil vaccine did.

I have recently discovered that the benefits from this probiotic combo comes when I take it while fasting (3 days, orange juice). Otherwise, components of it are harmful.

Isn’t the Gardasil vaccine linked to ME/CFS?

 

[MaximilianKohler]

Isn’t the Gardasil vaccine linked to ME/CFS?

No idea.

Vaccine's are highly dependent on the gut microbiome and it's plausible that an immune system stimulation (of any kind, including from a vaccine) could result in detriments for certain people with weak gut microbiomes & immune systems

 

[kangaSue]

And what's the outcome difference between super donor only and pooled super donor?

Not sure what you're asking but no doubt the answer will be in the particular paper;
https://www.ncbi.nlm.nih.gov/pubmed/28214091

 

[suevu]

Still actively looking for donors, we get hundreds of people asking for them, but not enough volunteers.