Hopefully by now most people here understand how desperate the need is for high quality donors, and that official sources of FMT have severe deficiencies currently, and there's poor availability for things other than c.diff. I've been doing what I can, but it will likely take some major group/coordinated action on our parts to bring about significant changes any time soon. To assist with this effort I've started by publicly sharing my actions/info/letters/emails here:
https://old.reddit.com/r/fecaltransplant
Both to spread information, and as a template and encouragement for others to take action to push for higher donor quality & availability. Please please, wherever you are in the world, contact your country's medical & research bodies, researchers, clinics, etc. to push for higher quality of donors and greater availability.
But also, I'm thinking about going a different route that might be faster. By taking things into our own hands.
I've been considering all of us trying to advertise/obtain high quality donors for [RDS clinic](
https://old.reddit.com/r/HumanMicrobiome/wiki/index#wiki_fmt_clinics.3A). The reasons being that RDS's current set up seems fantastic - donor can live anywhere in the US and ship on dry ice. This means that any donor we find would instantly give access to both RDS and all of us patients. Also, RDS's donors are significantly more affordable, and we have much more info on the donors, whereas Taymount refuses to give any info. And if we procure our own donors we'll have even more info.
It seems that people/donors are more willing to sign up initially for an official source of FMT, such as RDS. So us patients may be able to get people to sign up who wouldn't have otherwise done it for just a random person. Since AR has issues, MG isn't highly effective, and I heard another one of their donors just took antibiotics, it sounds like they don't have any great donors currently, so working with the community like this might be a big benefit for them too.
There was another California clinic mentioned here by [..], but the clinic didn't respond to my general FMT donor inquiry.
Basically we could create a flyer to share around both online and IRL. On it, we might use MG's site
https://mginfusions.com as a good example. We could possibly set up a similar website for the donor(s). Though maybe not necessary. Thoughts?
I recently learned from [..] that they personally set up a website and flyer which advertised for a "study". And even though they took the same approach as me - handing out flyers - they were orders of magnitude more effective in getting people to respond. That may work as a temporary thing for some people who are healthy enough do do that, but I think if we're going to do some coordinated action and try to get stable donors that everyone has access to I don't think any fiction would be a good idea.
Another detail is that I've seen previous discussion on some reddit subs about this. For example, discussion and an offer of setting up a website to attract donors -
https://old.reddit.com/r/ibs/comments/6sww6d/should_i_build_this_site_for_people_looking_for. I think reddit in general is vastly better than facebook for information sharing (facebook randomly removes comments with links in them), but it might be hard to coordinate action between people on the two platforms, and not sure how easy it would be to get people on one of them to move to the other.
So far we have this website
https://microbioma.org and I'm helping improve the english translation.
