Michael Harrop
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A handful of people here and there, but there are probably very few people who have the ability to reach super-donors, and I expect they need extra motivation (both them and the donor). I've been offering a referral reward ($2k or so) to all stool donor applicants for years.Has no one else even verbally expressed interest in finding a highly effective donor in their community?
Partly based on using them myself. But definitely, some of them could be highly effective for many people and we won't know until something changes with the FDA or we can run clinical trials.How do you know you don't already have a superdonor if you have dozens or hundreds of top-tier donors?
Yes I don't expect I'd be able to find a super donor. But perhaps a highly effective donor using the criteria I am gathering from info on the forum, website and questionnaire if I put in enough time and effort.A handful of people here and there, but there are probably very few people who have the ability to reach super-donors
I don't know the stats, but FMT seems to be decently funded. The problem as I see it is incompetence and apathy on the part of the people doing the clinical trials. So they don't even bother trying to acquire high-quality donors. Another problem is general ignorance. You and I spend time learning about the microbiome and FMT, but most people do not. That includes doctors and researchers who could opt to do FMT clinical trials.It's very odd that it gets so little funding, and other things with way lower likelihood of success are highly funded. It doesn't make logical sense.
Most people are incredibly lazy. Too lazy to sign up for a forum account and follow the activity there. And too lazy to lift a finger to do anything to better their own condition.I also don't understand why more people aren't in this forum itself when r/fecaltransplant is completely dead
I experienced this a little with some researchers. I had my son's microbiome sequenced when I was considering him to be an FMT donor for myself and was shocked at the lack of a specific type of bacteria since he was a natural birth, exclusively breastfed for 6 months, and I'm still breastfeeding him. (I am nervous about weaning because part of my still hopes I can get him a good FMT to maybe fix his allergies and mitigate the possibility of various chronic ailments so he can live a healthy life, and I think he is less likely to tolerate new microbes after weaning.) I emailed researchers explaining my son needs an FMT because he was exposed to Flagyl and they told me not to worry and that he's totally fine. Their apathy and apparent ignorance was super frustrating and depressing. (I never would have let him have that antibiotic exposure if I knew then what I know now.) After emailing the authors of 5-10 papers I gave up because none of them seemed to care. I quickly realized with the FDA rules about FMT in the states that they wouldn't be able to do a trial/ case study anyway, that it would need to be done in Europe, but one of those researchers blew me off too when I told him I was in the US. Then my own health problems started worsening and I realized I needed to get myself healthy first and I've basically been trying not to become disabled since then.You and I spend time learning about the microbiome and FMT, but most people do not. That includes doctors and researchers who could opt to do FMT clinical trials.
Perhaps a result of the poor parenting you cited earlier. My parents raised me to not be lazy, always strive to do my best, to be competetive, achieve, be self-sacrificing, and have the attitude that failure is not an option. Good qualities in moderation. Reflecting back on it though most of my peers in grade school were not raised like this at all.Most of them would rather sit around and wallow in their misery and demand that someone else do all the work
Indeed. I really hope someone in the federal government will do something about this (I'm trying to get them to understand). Based on what I've seen, and one person I talked to, the people sending hundreds of millions of dollars to the entities that make up the public research system don't seem to realize how flawed that system is. They're practically pouring that money down the drain in many cases.After emailing the authors of 5-10 papers I gave up because none of them seemed to care.
Many EU countries have the same rules and restrictions. A doctor in the US can do it, it just requires them to file paperwork.I quickly realized with the FDA rules about FMT in the states that they wouldn't be able to do a trial/ case study anyway, that it would need to be done in Europe
I didn't know that. I read an interview with one US pediatrician on the importance of certain bacteria for lung or lung immune development in babies in the first few months, and iirc he said he didn't know anyone doing FMT on babies in the US. That may be the hesitancy I encountered is the baby aspect. Now I wouldn't do it anyway because I don't have a good donor for him and I didn't know much about donor selection at the time.Many EU countries have the same rules and restrictions. A doctor in the US can do it, it just requires them to file paperwork.
There's a famous CFS researcher (Ron Davis) who has a son with severe CFS: https://www.mercurynews.com/2017/08/12/stanford-scientist-searches-for-answer-to-his-sons-devastating-condition/I bet they would have tried FMT to cure their daughter back then if they had known about it.
I think the C-section neonate situation is possibly a special circumstance and maybe should be treated differently from infants and children needing an age-matched FMT for conditions like C. diff. The reason being these babies are not seeded at all, and are about to be primarily seeded with skin bacteria, as opposed to babies/children who have already been initially seeded. I think it might be riskier to use an FMT from a different neonate in these cases for a couple reasons:
I'm doubtful, but I don't think it's been tested yet.Hypothetically speaking, could a few micro-FMT or probiotic-sized doses to young children with deficient microbiomes be beneficial by seeding them with missing bacteria? But not detrimental by altering the structure of their microbiome in a too adult-like way, because the dose is small?
I got the idea from the study referenced in this article: https://www.uchicagomedicine.org/forefront/research-and-discoveries-articles/restoring-gut-microbes-missing-in-early-life-dysbiosis
That is super interesting! I was thinking you were talking about <1 month olds.I think these 1-2-year-olds could be stool donors for anyone, including newborns.
Based on two metagenomics tests of my son in series either they do not detect dormant bacteria or these tests are not very accurate. The first test showed a high percentage of Bifidobacteria and the second test detected none at all. And the second test showed maybe 10 new species. He did get food poisoning in between the tests but I think extermination of all Bifidobacteria from one infection seems unlikely, right? That's why I think the tests either miss dormant bacteria or are inaccurate.I'm pretty sure the common sequencing methods detect "dormant" bacteria.
I don't think that conflicts with my position. And it doesn't appear that they tested "micro-FMT or probiotic-sized doses"?
Ah. I could be wrong but I don't think that precise level of age-matching is required.
This for sure. https://humanmicrobiome.info/testing/
No it wasn't an FMT they tested it was a probiotic.I don't think that conflicts with my position. And it doesn't appear that they tested "micro-FMT or probiotic-sized doses"?
Yes, one of the many people who should be supporting a project like this. I think she briefly contacted me to inquire about ordering. She should be aware of everything going on, and she's even married to a seemingly very healthy NFL player, so she already has inroads for recruiting there, yet doesn't appear to care.just wanted to check you've tried reaching out to Mikhaila Peterson
She's married to a different Jordan Fuller. His LinkedIn says "Chief Operations Officer at Peterson Academy. Background in mobile game development and marketing." He seems healthy but I don't think she has connections to the NFL.she's even married to a seemingly very healthy NFL player, so she already has inroads for recruiting there, yet doesn't appear to care.
If it's been a long time since she asked about ordering I think it's plausible she isn't aware.
Ah. I was thinking it might be useful to contact him (https://www.linkedin.com/in/jordanmichaelfuller/) but then I saw their health project is just selling supplements (https://fullerhealth.com/).She's married to a different Jordan Fuller. His LinkedIn says "Chief Operations Officer at Peterson Academy. Background in mobile game development and marketing."
She's been getting updates.If it's been a long time since she asked about ordering I think it's plausible she isn't aware.