Trying to coordinate community action to increase the availability of high quality FMT donors

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Started the discussion in this facebook group https://www.facebook.com/groups/1676427302597468/?ref=bookmarks

Direct link: https://www.facebook.com/groups/1676427302597468/permalink/2192052601034933/

Shared on reddit too: https://old.reddit.com/r/fecaltrans...ing_to_coordinate_action_among_the_community/

Below is the text.

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.


Flyer text (need someone good with graphics to design it):

Looking for stool donors!

Donate your poop; make money and save lives!

The microbes that live in our gut - termed the "gut microbiome" - are looking to be the crux of human health and development; possibly being responsible for every disease currently beyond medical capabilities. And the easiest way to get these microbes is from poop! Research in this area is blooming rapidly. The major problem is that the vast majority of people are in very poor health and thus it's extremely hard to find high quality stool donors for Fecal Microbiota Transplants (FMT). It's currently looking like less than 1% of the population qualifies to be a high quality FMT donor.

Our goal is to find these "one percenters" and connect them with researchers, doctors, clinics, and even private individuals who have no other treatment options.

If you are young, athletic, and in perfect health, physically and mentally, with little to no antimicrobial exposure and no food intolerances, allergies, etc., you might be one of these rare gems! If you are, you could greatly contribute to advancing scientific/medical understanding and save innumerable lives.

Please check us out at MICROBIOMA.ORG

And if you aren't healthy enough but know someone that might be, please pass this on to them!
Someone had this to say about the flyer text:

I am thinking.. maybe saying "We need your Poop!" and then below that "Make money and save lifes by becoming a donor!

and even putting a picture of cartooned poop on the poster - would be something 'catchy'.. it would definately stick out and might increase exposure (rather than saying "we are looking for stool donors"). Or maybe not... maybe better to give it more 'scientific' poster look? Let me know your thoughts.

 
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Thanks, I'm familiar with that ASU Autism study. I've been encouraging them to look for higher quality donors. I think if they do they'll get even better results.

The microbioma site was created by a friend in Spain. I helped translate it to English, and I paid someone to create the flyer.

FDA is not a problem when it comes to this. FDA does not regulate DIY FMT, only what doctors can and can't do. Individuals may find and screen donors on their own and do DIY FMT, which is a very simple procedure.
 
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I helped translate it to English,
Thats great! so do you have any idea how much they might pay people? rather curious.... seems like it would be outstanding public service project for: like a college CREW team. (once they've passed inspection...)


would a donor need to be free of a positive Eppstein Barr? (rather curious)
 
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Thats great! so do you have any idea how much they might pay people? rather curious.... seems like it would be outstanding public service project for: like a college CREW team. (once they've passed inspection...)


would a donor need to be free of a positive Eppstein Barr? (rather curious)
Cost is negotiated between recipient and donor, but the website suggests $40 per stool donation.

My thoughts exactly in regards to college athletes! It's a win-win, particularly when you have news coverage of controversy around them not getting paid and not having money to eat even. The key issue is informing them this option exists! If you have any suggestions on that please let me know! I've attempted in the past to recruit college athletes unsuccessfully. I had trouble finding out when they practice in order to hand them flyers in person.

For EBV, take a look at the European consensus guidelines here: https://old.reddit.com/r/HumanMicrobiome/wiki/index#wiki_screening.3A

They list EBV, so likely that should rule out a donor.

FYI: somebody has just arrived at PR and is receiving fecal transplants: see thread under treatments:

Thanks! I'll check it out!