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

[MaximilianKohler]

@suevu I don't think any random person/group of people are able to run a clinical trial. Now if we had a doctor who knew how to do it and just needed funding, and funding from the community was possible, that's the point where we can start focusing on raising funds.

 

[suevu]

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.

How's your mother health?
Where you born by c-section?
Antibiotics prior to your birth or even during pregnancy?
Breastfed?
Antibiotics during young age?

In my case my mother almost died from a severe infection when she was pregnant and she had to take 15 days of antibiotics having me inside of her... Thats how my story started, I probably had a corrupted microbiome my whole life, horrible acné, always trouble with lights as long as I remember I always had photophobia (with CFS even more sensitivity than usual), but in general all the rest was fine. But it seems I already had some issue going on that I never took into account.

 

[Rufous McKinney]

don't have any connections to help get this trial done

Something that came up recently: on kidney transplants, they came up with a form of: chain donors.

1) the wife would like to donate a kidney to husband, but isn't compatible. She goes on a list.

2) she donates to somebody else for whom she IS compatible. Then, somebody else donates to you.

I'm not explaining this very clearly, but it was like on 60 minutes or something. A lot more people could get a kidney transplant thru this type of shared approach..and a chain.

Are we also looking for, say, the same blood type in a FMT donor?

 

[Rufous McKinney]

How's your mother health?

Wow, thats pretty tough what you've been thru and certainly sounds probable. In my case, I wish now I could ask more questions. From what i know:

1) Mother isolated and depressed during my pregnancy (she became severely so, later on).
2) I'd say its pretty likely an antibiotic appeared somewhere in all that swirl.
3) I was breast fed for one year
4) but at 2 months: they were told to introduce foods, I even had the doctor notes for it..at one Year I unravelled.
5) they took the tonsils when I first go Mono at 10. My tonsils were famous for huge white blobs hanging there...I think that is strep. I must have been put on antibiotics myself numerous times as a child, further wiping out the gut.

I recall asking both parents why i was put on phenobarbitol as a child for "stomach cramps". Nobody could explain what was up. I seemed to have great parents who paid: little or no attention to these details.

 

[suevu]

@suevu I don't think any random person/group of people are able to run a clinical trial. Now if we had a doctor who knew how to do it and just needed funding, and funding from the community was possible, that's the point where we can start focusing on raising funds.

Doctors can be hired and do what they are paid for, like anyone else, If they are paid to do a clinical trial they will do so.

We already know from own personal experiences that we can recover with good FMT program, there is no need to discuss or waste our time with people who don't know or don't want to assume the facts.

Now we should need to focus on getting the funds. Since FMT can be used for a broad number of conditions the project shouldn't be only focused on CFS but all those diseases that can be treated quite easily and with a great success with it and especially those where drugs don't work at all such as:

Mainly:
-Fibromyalgia
-CFS
-Ulcerative Colitis
-Chrons
-IBS
-IBD
-Food intolerances


And could also add:
-Major depression and depresssion disorders
-Insomnia
-Hyperactivity
-Bipolar disorders (in this case there are many studies)
-Anxiety and General Anxiety Disorder
-Autism

And many others.

 

[suevu]

Wow, thats pretty tough what you've been thru and certainly sounds probable. In my case, I wish now I could ask more questions. From what i know:

1) Mother isolated and depressed during my pregnancy (she became severely so, later on).
2) I'd say its pretty likely an antibiotic appeared somewhere in all that swirl.
3) I was breast fed for one year
4) but at 2 months: they were told to introduce foods, I even had the doctor notes for it..at one Year I unravelled.
5) they took the tonsils when I first go Mono at 10. My tonsils were famous for huge white blobs hanging there...I think that is strep. I must have been put on antibiotics myself numerous times as a child, further wiping out the gut.

I recall asking both parents why i was put on phenobarbitol as a child for "stomach cramps". Nobody could explain what was up. I seemed to have great parents who paid: little or no attention to these details.

I still haven't found a single CFS patient without a history like ours, full of microbiome stressors even in cases like yours before birth.

 

[Rufous McKinney]

full of microbiome stressors even in cases like yours before birth.

At least fortunately, my daughter is far more resilient than I. (or my mom). We avoided the vaccine schedule, and I"m pretty sure my husband' with those great immune genes helped dilute out our genetics.

Hybrid vigor looks promising!

 

[MaximilianKohler]

Something that came up recently: on kidney transplants, they came up with a form of: chain donors.

Are we also looking for, say, the same blood type in a FMT donor?

Currently there is not good support for donor matching. Donor quality seems to be the most important factor currently. So something like that wouldn't really be helpful. What we need are extremely healthy people/person that everyone could use.

The sections of this phoenixrising forum dedicated to sharing new research have more supporting info, such as:

Mitochondria Play an Unexpected Role in Killing Bacteria. The energy-producing organelles also send out parcels with antimicrobial compounds to help destroy pathogen invaders in macrophages. (2018): https://www.the-scientist.com/the-l...-an-unexpected-role-in-killing-bacteria-65246

If anyone wants to discuss/debate FMT being viable for CFS then please create a new thread and link it here instead of adding off-topic discussion here. Thanks

Doctors can be hired and do what they are paid for, like anyone else, If they are paid to do a clinical trial they will do so.

Since FMT can be used for a broad number of conditions the project shouldn't be only focused on CFS but all those diseases that can be treated quite easily and with a great success with it and especially those where drugs don't work at all such as:

I'm willing to help with this however I can if people think this is a viable option. But I know little to nothing about fundraising or bringing about such a project. It seems like it might require a very large amount of money.

 

[kangaSue]

Also bear in mind that even less is known about the viral balance carried in donor stool and some studies suggest this may be part of what can make FMT effective for different conditions so it's another factor that may need to be taken into consideration for determining who would be your super-donor.
https://gut.bmj.com/content/67/4/634

 

[suevu]

Also bear in mind that even less is known about the viral balance carried in donor stool and some studies suggest this may be part of what can make FMT effective for different conditions so it's another factor that may need to be taken into consideration for determining who would be your super-donor.
https://gut.bmj.com/content/67/4/634

Agree, it seems at openbiome, they are colleting only the viruses for the "drug" they want to develop from their biome solutions they are using right now.

 

[suevu]

I'm willing to help with this however I can if people think this is a viable option. But I know little to nothing about fundraising or bringing about such a project. It seems like it might require a very large amount of money.

It will require a lot of money not just to hire people, but to legally blind the site from the FDA or any other legal lawsuits, but also for many software licences, developing, etc.

 

[Rufous McKinney]

What we need are extremely healthy people/person that everyone could use.

My husband said he saw an advertisement (small) in a local paper in Ukiah CA for someone offering to be donor.

Perhaps they can be tracked down somehow; or you could place a Fecal Donor wanted ad there.

 

[suevu]

What we need are extremely healthy people/person that everyone could use.

You are giving for granted that there isn't such thing as a compatibility or everyone is the same in terms of getting results with the same donor. That's where I think the key lies.

 

[MaximilianKohler]

As I said before, there is very little support/evidence for donor matching. There is strong support/evidence for donor quality.

Of course if you have a complex puzzle and certain people have certain parts of it, then matching them with the people who need those parts will be useful. But if you have people who have the whole puzzle, or the vast majority of it, then you can use them for everyone.

 

[suevu]

As I said before, there is very little support/evidence for donor matching. There is strong support/evidence for donor quality.

Of course if you have a complex puzzle and certain people have certain parts of it, then matching them with the people who need those parts will be useful. But if you have people who have the whole puzzle, or the vast majority of it, then you can use them for everyone.

There is barely no evidence for anything as most clinical trials are bullshit, they use all the same subjects as if we were all the same, without keeping in mind that patients have:
-DNA differences
-Current microbiome distribution
-Probably some other DNA expressions even sharing the same genes
-Different blood work

So subjects with all these differences are used as baseline when they all are so different, and they even bother to consider as "science" the outcomes of their studies when the subjects are so different and all those differences are not kept in mint?

Then they see that for conditions like U.Colitis where there is extensive research, the see one donor works for 7 patients but not for 2, however another donor works for other patients where the previous donor doesn't work?

Why don't they focus on the differences between the patients that can recover and those who don't to find the underlying cause (at boths sides) that make donors and procedures successful?

As an example (summing up very much), it might be that certain donor X with a high distribution of A bacteria in his microbiome, works wonders for patients with a high number of Clostridia but not for those with a high number of Bacteroidetes that seem to be those patients that not respond.

Then you can add DNA to the equation, adding typical genes like IDO2, MTHFR making it more complex but also easier to predict and match even before the procedure.

Also some donors might be very high in lactic acid consuming bacteria, that can be very helpful for people with CFS, but not for people with MS or depression (again, just a silly example of the idea) who are depleted of those bacteria genuses. So this donor will not help with this patient condition but will help with that.

That's where I want to focus and I think should be all the efforts put on, not only on the quality (that of course is the number 1 factor) but on the compatibility and suitability for each condition.

 

[tiredowl]

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..

https://www.volvat.no/tjenester/mage-og-tarm/fekal-transplantasjon/

I might consider it in the future... I am so sick of this disease as well.

 

[suevu]

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..

https://www.volvat.no/tjenester/mage-og-tarm/fekal-transplantasjon/

I might consider it in the future... I am so sick of this disease as well.

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

 

[tiredowl]

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

Yeah it's insane how expensive it is, seems it's better to do just do it yourself then... but it is also more risky I would assume.
I remember reading someone who did it themselves and made them worse, so its definitely a gamble unless one is 100% sure the donor is healthy.

 

[suevu]

Yeah it's insane how expensive it is, seems it's better to do just do it yourself then... but it is also more risky I would assume.
I remember reading someone who did it themselves and made them worse, so its definitely a gamble unless one is 100% sure the donor is healthy.

Yeah, thats the purpose of the microbioma.org project, having high quality donors available, for certain conditions and feedback and having a prediction algorithm implemented so before doing it, trying to guess which potential donor would be the best for every case.

 

[MaximilianKohler]

Then they see that for conditions like U.Colitis where there is extensive research, the see one donor works for 7 patients but not for 2, however another donor works for other patients where the previous donor doesn't work?

Citation?

Why don't they focus on the differences between the patients that can recover and those who don't to find the underlying cause (at boths sides) that make donors and procedures successful?

They have done those studies. They showed donor quality was the main factor. Recently shared on /r/HumanMicrobiome.

That's where I want to focus and I think should be all the efforts put on, not only on the quality (that of course is the number 1 factor) but on the compatibility and suitability for each condition.

Like I said, most of the current evidence supports using a donor who has the whole puzzle, and thus they can pass on whatever parts of the puzzle the recipient is missing.

Once there are donors available with 0 lifetime antimicrobial use, consistent type 3 stools, and everything else on the questionnaire is good, and they still aren't effective for everyone, then that's the time where the focus can start to switch to donor matching.