UK FMT - let's search for the healthiest donors for database project

[MichaelM]

Dear All,

Anyone in the UK who is interested in FMT, I am considering supporting this site and running some Facebook campaigns to find FMT donors for DIY.

https://microbioma.org/en/donate/

I spoke the NA admin, and they have had success in gathering donors. UK they have none so far. They estimated that out of 20k ad hits they get 50 donors, from very athletic/high quality individuals. If you are going with a stranger, you've got to make sure they are healthy

Does anyone want to pool resources and try some Facebook ads on this?

If it works, sharing the successful/healthiest donors could be a good route.

I'm also working with a top gastro who supports the idea, however I am getting impatient as I have just asked many of my open minded friends to very little success, and may end up going with Taymount clinic. Either way I am interested in forwarding the cause.

Plus I just think finding one extremely healthy donor would actually be better for repeat transplants, and cheaper.

Best wishes

 

[Hip]

Are you suggesting to crowdsource some funds to place ads for UK donors on Facebook, and then getting these donors to join microbioma.org?


By the way, do you know if microbioma.org keep track of superdonors? Superdonors are individuals whose fecal samples have a track record of working well for a given disease. Getting superdonor fecal samples can make all the difference in getting good results or getting no results.

But all the FMT organizations I know do not keep track of superdonors, even though it is not difficult to do (all you have to do is note the success rate of each individual donor in treating each individual disease).

The Taymount clinic do not keep track of superdonors, and neither do Openbiome.

Furthermore, I read that Openbiome's donors are triggering IBS in 30% of patients. So that's one of the negative effects that can occur in FMT. I think it would be good for any FMT organization to track not only superdonors, but also track bad donors who are causing recipients to get IBS.

 

[MichaelM]

Are you suggesting to crowdsource some funds to place ads for UK donors on Facebook, and then getting these donors to join microbioma.org?


By the way, do you know if microbioma.org keep track of superdonors? Superdonors are individuals whose fecal samples have a track record of working well for a given disease. Getting superdonor fecal samples can make all the difference in getting good results or getting no results.

But all the FMT organizations I know do not keep track of superdonors, even though it is not difficult to do (all you have to do is note the success rate of each individual donor in treating each individual disease).

The Taymount clinic do not keep track of superdonors, and neither do Openbiome.

Furthermore, I read that Openbiome's donors are triggering IBS in 30% of patients. So that's one of the negative effects that can occur in FMT. I think it would be good for any FMT organization to track not only superdonors, but also track bad donors who are causing recipients to get IBS.

Thanks for your reply.

You make many important points. I don't know if microbioma.org keep track of their superdonors, I've only just started a dialogue with them. But they do seem to be particular about their donor requests (from the flyer and the email exchange I had). The Openbiome stuff is disconcerting for sure. I also read some reports of adverse effects, and it's not pleasant reading. I find Taymount a little more reassuring as a prospect, but they aren't clear with donor info either. 10 different donors, I just don't know how I feel not knowing much about them and spending £4k+ on that. The other thing about Taymount is they were giving their donors Symprove for a while. That makes no sense to me whatsoever.... why give probiotics to the donor, when it will get in the way of their existing microbiome, and you could just be giving the drink to the client?! Also my condition was actually triggered/worsened by Symprove... However they discontinued this now so...


I think my intention at this stage is to start a conversation about the idea, and potentially crowdsource into posting ads yes. I have no idea how much ads are yet or how they work so it may be that individuals can fund their own ad campaigns and we just have a template and open source type store of results perhaps.

So for now I'm just floating the idea. It seems people want to do it but there's not sufficient resources/quality and the rest, and individuals stumble at the first hurdles.

It also seems that microbioma.org is just a few people who are holding lists of donors, for other people to do with as they please. It may be that they could do with some volunteers or input, perhaps.

It could either be with them, or within a "work group" of sorts within this community. To pool our energies to try to find superdonors and to share results, as opposed to (what I am doing) tentatively asking friends or family, putting in loads of effort into it, feeling awkward (actually just feeling their awkwardness), hitting a wall and then... giving up? or trusting strangers with just myself to consider the vetting process.

Best wishes