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

[suevu]

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.

It seems an issue of both compatibility (not all donors are suitable for all recipients) and muscosal or resident gut bugs resilience to be colonized by new compatible & healthy bugs. Its extraordinary complex. Also some other conditions do apply, some people with MCAS active have issues getting new gut flora while these same patients after putting under control their MCAS can accept new gut microbes even from the same donor and fully recover (as far as I know there are two cases recorded of failed FMT due to MCAS, and successful after MCAS under control). Most likely many other parameters that prevent FMTs from succeeding we still don't know and where all research and efforts should be put on.

Microbioma.org compatibility and patient tailored solution algorithm we are developing aims to shed light there.

 

[Hip]

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.

Any reason why you did you not use these same good donors your acquaintances used on yourself?

 

[suevu]

Any reason why you did you not use these same good donors your acquaintances used on yourself?

Yes, very simple, because we are all in different countries.

 

[Hip]

Yes, very simple, because we are all in different countries.

Can I ask, how did your acquaintances know that their donors were good donors? When I contacted the Taymount clinic to ask whether they keep records of which of their donors were superdonors, with a track record of helping patients more than other donors, they did not answer my email (which I think means that they do not track superdonors, but did not want to admit this).

In order to know whether someone is a superdonor, you have to keep a track record of how patients who received their fecal samples responded to the treatment.

 

[suevu]

Can I ask, how did your acquaintances know that their donors were good donors? When I contacted the Taymount clinic to ask whether they keep records of which of their donors were superdonors, with a track record of helping patients more than other donors, they did not answer my email (which I think means that they do not track superdonors, but did not want to admit this).

In order to know whether someone is a superdonor, you have to keep a track record of how patients who received their fecal samples responded to the treatment.

Based on the results, some people recover fully and after months in the boards dissappear forever without even sharing their donors contact info, its so sad, we are so selfish.

@MaximilianKohler can tell you more, he had some super donors that helped him a lot but they dissappeared too.

We don't have a track, we would need stric standards for that and we dont have them. Someone dedicated, with some standarized forms, tests, etc... We can't afford financially now.

 

[Wishful]

he had some super donors that helped him a lot but they dissappeared too.

Is it just me, or does that sound a bit suspicious? I'm imagining BigPharma hunting down those patients and silencing them. Did you check the obituaries? Maybe curing ME with FMTs causes a delayed fatal side-effect?

Any treatment where all the patients can't be contacted afterwards makes me suspicious.

 

[MaximilianKohler]

@Wishful No one disappeared. They simply declined to do more FMTs. The first one didn't want to do it in the first place, but was convinced by a 3rd party. The 2nd person I can only guess at why they declined to donate more.

 

[suevu]

Is it just me, or does that sound a bit suspicious? I'm imagining BigPharma hunting down those patients and silencing them. Did you check the obituaries? Maybe curing ME with FMTs causes a delayed fatal side-effect?

Any treatment where all the patients can't be contacted afterwards makes me suspicious.

When I say disappeared is a way of talking, they simply stop donating.

Of course big pharma will cure ME, like it did with diabetes, Parkinson, MS, IBS, UC and Chrons It's a matter of time, please never do FMTs, it's all bullshit, get to a doctor and take ALL the drugs they tell you to take and the cure is only a matter of time

 

[Wishful]

I guess the humour in my posting was a bit too subtle.