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

[MaximilianKohler]

I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/

There is tremendous support for FMT being close to a panacea with the major caveat being that the donor is in perfect health, with an unperturbed, disease-resistant, curative gut microbiome. It's currently looking like fewer than 0.4% of the population qualifies: https://archive.fo/JmcMV#selection-1525.120-1525.121

I've done DIY FMTs from 9 different donors, published my detailed results & lessons: https://docs.google.com/document/d/1cagQpzRCa7Uy8QZYV6NiywDhPELBlzHxUk1OWPR3kNM/, and shared it with hundreds of researchers.

First I emailed all 180 authors running current FMT clinical trials https://archive.fo/YZ7Xk#selection-1603.11-1607.1 to complain about, and advocate for higher donor quality. Then I emailed dozens more researchers who specifically specialize in CFS and IBS to see if they'd be able to run an FMT clinical trial with high quality donors. I emailed the major microbiome research centers in California. I emailed CFS and IBS advocacy groups to ask who I should contact. I got no takers so far.

Among professionals involved in FMT/microbiome there seems to be a large amount of ignorance, apathy, myopic focus on one particular thing, and resistance to reviewing relevant information and investigating its merit.

How do we get someone to run this damn clinical trial??

 

[Rufous McKinney]

I emailed the major microbiome research centers in California.

I thought I had almost SAVED YOU! But its an ALMOST (darn it).

Ventura (CA) doctor seeks FDA approval for controversial medical technique to save lives....

Dr. Sabine Hazan-Steinberg. Will look for a link to this article. But darn FDA - bog.

 

[Rufous McKinney]

How do we get someone to run this

Here is a link to the article about this topic, I have not read it entirely yet.

https://www.vcreporter.com/2019/03/...tance-of-new-medical-technique-to-save-lives/

My husband is a prime candidate to be a donor. I should figure this out. 50 years: he has had like two colds and one flu and is never sick for more than one day. He never takes antibiotics and was largely unvaccinated due to his mom being an Original Antivaxxer.

 

[MaximilianKohler]

Thanks for the link. That looks like a good lead.

Regarding your husband, it's possible he could be a good donor for you, but probably not for most other people, since you generally want people under 30 years old (see the FMT questionnaire in the wiki I linked).

 

[junkcrap50]

Leonard Weinstock from Washington University in St. Louis is a gastroenterologist who does FMTs for C. Diff in his office. I saw him to check for SIBO several years ago, and he told me that he'd like to do a FMT study for CFS if he could get funding for it.

There's a clinical trial of FMT for CFS in Norway going on: https://clinicaltrials.gov/ct2/show/NCT03691987

Also, @suevu has done an extensive search for a healthy, good FMT donor. Her website to find a donor is here: www.microbioma.org I don't know what her questionnaire is like.

 

[MaximilianKohler]

I contacted those Norweigian guys already to share info on what makes a high quality donor and urged them to find one. I don't know if they bothered to do so and we won't find out till 2023 - when the study ends. I'm not waiting around.

Leonard Weinstock sounds like a promising option. We should work to find out who we need to petition to get funding for the study. Did he give any clues on that? Or could you ask him? I'll also try emailing him.

I contacted Dr. Sabine Hazan-Steinberg, and her response wasn't that clear but it didn't look like she was willing to do the study. Though other people might try asking about it.

About that microbioma.org site, I posted about it here: https://forums.phoenixrising.me/thr...vailability-of-high-quality-fmt-donors.62555/ but got no responses. The site is only useful if people work to find high quality donors.

What I understand from Suevu's comment is that she's frustrated with doctors. Sure, most of us are, but we can't run a clinical trial on our own, and when I proposed a community effort to find high quality donors on our own no one joined in.

 

[suevu]

we can't run a clinical trial on our own, .

Why not?

We only need funding.

Even without a clinical trial, we already know the key to recover is good donors, we need to find funding online to recruit and evaluate good donors.

We need bascially funding. Nothing else.

 

[junkcrap50]

Leonard Weinstock sounds like a promising option. We should work to find out who we need to petition to get funding for the study. Did he give any clues on that? Or could you ask him? I'll also try emailing him.

Yes, I was very impressed by Dr. Weinstock. He seemed like an honest, open minded, empathetic, and intellectually curious person. He took a very large amount of time with me (45mins-1hour), despite it being obvious that he is very quick with his typical patients (he stepped out 1x/2x to see other patient(s) and came back to me). He does research into SIBO, which most GI docs will say is BS or not real. He also uses LDN - he even wrote a chapter about it in an book on LDN. So, while those are kind of low hurdles, compared to typical mainstream doctors, it's hopeful.

I doubt he remembers me. I saw him 7+ years ago. I would just be emailing him randomly and I do not live in St. Louis or near him.

Petitioning him for funding isn't quite accurate probably. He might shed more light on who to target however. I think the FDA is the organization who would limit the use of FMTs for anything other than C.Diff. Private donations would be the way to go, but raising funds for it would be quite a challenge.

I think that Weinstock has patients find their own donors for FMTs, but his office will run all the infectious disease tests and screening. So, I don't know how much he knows about an "ideal" donor. I think other microbiome researchers would know more about it.

what makes a high quality donor and urged them to find one.

Ask @suevu . She has an extensive questionnaire and appears to be very selective. I will post our private messages talking about it on here since this is an appropriate thread. Perhaps she would be willing to share her questionnaire online?

I'll also try to find some mainstream science news articles talking about "Super Donors" who eat ideal diets, are triatheletes, etc. The wiki page for the subreddit /r/HumanMicrobiome has 1 person who claims to be a Super Donor and has his own website "selling" his "donations": https://mginfusions.com/ More info and a Q&A here

https://www.reddit.com/r/FMTDatabase/comments/86we9f

The reddit page has a lot of info and lots of good info on various techniques for mixing and transplanting the donation. The science is pretty new, so there's a lot of variables and no set or ideal procedure.

 

[junkcrap50]

I think a good approach to take would be to try to get some FMT or Microbiome researcher or expert interested in CFS. Capitlize on their knowledge and see if he/she can apply it to CFS. Probably won't get him/her to research CFS full time but could at least give advice, help design a study, figure out how to get funding and a trial going. Whoever runs the Reddit page for /r/Microbiome or /r/HumanMicrobiome is a PhD student, I think. Also he/she or someone else who posts a lot of the links also is a new researcher and expert in the field.

I think that they would be VERY interested in the fact that 1 metabolite of a microbiome bacteria has cured CFS cells, according to Ron Davis. Indoleproprionic acid made by Clostridium sporogenes. Perhaps try posting that or a link of where Ron Davis mentions it on the Reddit pages and see if it gets any discussion going.

 

[Rufous McKinney]

generally want people under 30 years old

yes thats the one big problem: He is 72. They don't want us old ones in their studies, etc. bTW: I got my gut to improve dramatically by taking four chinese traditional herbs for the gut (IBS-D version). I did not take probiotics. Or eat any fermented foods. Which of course is interesting and counter-intuitive as we've been told the correct critters are: missing possibly and must be obtained somehow. Yet those correct critters seem also "missing" from probiotics we buy. (or mostly).

I did make some dietary adjustments, mostly just seriously less carbs like grains (bread) and refined type sugar (near zero).

 

[Wishful]

There is yet to find the CFS patient whose microbiome is not fully corrupted and has been taking loads of antimicrobials for years, but those are facts, and in the field of health facts don't get money in your pocket.

Are you claiming that all CFS patients have been taking 'loads of antimicrobials for years'? I haven't. I had a couple of courses of antibiotics since developing ME, and they had no effect on my ME symptoms. I had various major changes in my diet, which should have had major effects on my microbiome, but had no effect on my ME symptoms. Well, I did develop type IV food sensitivity as part of my ME, and that was cured by food poisoning (the coconut milk was a bit off), so I attribute that major change to microbiome alteration, but the other ME symptoms remained.

I believe that the microbiome might play a role in ME, but I don't consider it a likely candidate as a major cause of ME. If it was as simple as a species or two of bacteria keeping us in this state, I think remissions would be more common as a result of changing diet, or antibiotics, or other such gut-altering changes.

I certainly don't consider my microbiome to be fully corrupted.

 

[Rufous McKinney]

Here I have been observing improvements in my gut and presumably am better absorbing food. But the ME symptoms like brain inflammation don't seem to have improved.

Never taken an antimicrobial.

 

[MTpockets]

@junkcrap50 Do you have a link to that Ron Davis study or any more info on that? I would really like to read about that.

 

[MaximilianKohler]

I don't know how funding is going to help find donors. Except if we're going to pay for advertisements in university newspapers to try and attract top athletes. But even then people seem way more unlikely to be donors for random sick people vs an established institution/clinical trial/doctor. The main issue with getting high quality donors is finding them, and them being willing to be donors.

SIBO, which most GI docs will say is BS or not real

I say the same thing: https://medium.com/@MaximilianKohle...erstanding-of-the-gut-microbiome-f26c74be141b

@junkcrap50 I think you misread some of my statements. Anyway, I emailed Dr Weinstock to ask if there's anything we can do to help get funding for the trial.

MG does not claim to be a super donor, and definitely is not one.

As I said in the OP, I'm the one who created and maintains that wiki. I'm not a PhD student or researcher and don't have any connections to help get this trial done. I've been sharing my efforts publicly on that sub, and elsewhere, and haven't gotten anyone to join in yet.

@Wishful Diet can be helpful but is very limited. Take a look through the "diet" section and "intro" page of the wiki linked in the OP to get a better understanding of the gut microbiome's impact on the entire body. Microbiome interventions are not simple. Antibiotics do a wide range of harm even if they are temporarily helpful for some people.

 

[Wishful]

@Wishful your microbiome is definitely dysbiotic if you are not in perfect health.

Sorry, but statements like that look like blind faith rather than real knowledge of a very complex system. If I had a broken leg, I wouldn't be in 'perfect health', but I don't see why it would cause dysbiosis. I can think of lots of health issues that shouldn't logically have an effect on (or a cause in) the microbiome.

 

[suevu]

I claim that to get into the CFS trap you must have been corrupting your microbiome for years and then either have a final trigger (sudden onset) or a slow onset where certain microbes (Im not mentioning bacteria as it seems viruses play a bigger role) start to take control of your body and gut because the rest are weakened.

We all are different, probably some gene predispositions do apply in this puzzle,

we see it now everyday with many studies, DNA plays a role, but microbes are the other half of the equation, and they are shaped by many factors, being antimiobials the most improtant but not the only one:
-food
-sugar
-mold exposure
-pollution
-processed foods
-infections

Etc...

The consecuence of taking antibiotics and corrupting your biome is not inmediate, it might happen many many years after you take them and thats well documented you can read "Missing microbes" to find out more. The amount of variables is simply astonishing thebest example is that many people recover fully or improve greatly after compatible FMTs, I have tried it myself and I have improved so I have absolutely no doubt where to point the solution.

Of coursse I'd rahter have a drug to get you out of this in two days,

 

[MaximilianKohler]

Keep in mind that the gut microbiome is heritable, influenced by genetics, and damage compounds over generations. [More citations]

 

[suevu]

Petitioning him for funding isn't quite accurate probably. He might shed more light on who to target however. I think the FDA is the organization who would limit the use of FMTs for anything other than C.Diff. Private
The reddit page has a lot of info and lots of good info on various techniques for mixing and transplanting the donation. The science is pretty new, so there's a lot of variables and no set or ideal procedure.

WE can start the fundrising ourselves online, on some site like gofundme or similar, its the only way, I have been doing this in an amateur way, but very few people want to collaborate, only a few, most want to get the donor as a service so I'm reconsidering if doing this for non-profit is going anywhere without any funding at all besides my own money and time.

I'm also developing an AI algorithm that will find the best match donor for every patient and condition keeping in mind many variables, and gets the feedback from the FMT results, so the more people who uses it, the more accurate it becomes. But I have to work, I would need funding to se this up working and dedicate full time, fortunately my health is not yet 100% but much better after the FMTs and I see this is the ONLY WAY out.

 

[suevu]

There are so many variables to keep in mind that double blind studies are even worthless when subjects are not he same and have not the same symptons can't be given the same solution.

In this monent of history we are doing FMTs just like if we were doing blood transfusions without knowing that there is a compatibility chart. If you did blood bood transfusions randomly like most of the trials are done, the result you would have is that they don't work.

 

[Rufous McKinney]

the gut microbiome is heritable, influenced by genetics

I definately know mine is related to my Mother's.....so both a genetic and transfer problem were likely.

I had so many gut issues as a child. Yet didn't view it as we view it now.