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

Discussion in 'Advocacy, Contests and Events' started by MaximilianKohler, Apr 7, 2019.

  1. MaximilianKohler

    MaximilianKohler New Member

    Low FMT donor quality is likely what's keeping this from being an available cure.


    I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/

    There is tremendous support for FMT being close to a panacea with the major caveat being that the donor is in perfect health, with an unperturbed, disease-resistant, curative gut microbiome. It's currently looking like fewer than 0.4% of the population qualifies: https://archive.fo/JmcMV#selection-1525.120-1525.121

    I've done DIY FMTs from 9 different donors, published my detailed results and lessons: https://docs.google.com/document/d/1cagQpzRCa7Uy8QZYV6NiywDhPELBlzHxUk1OWPR3kNM/, and shared it with hundreds of researchers.

    First I emailed all 180 authors running current FMT clinical trials https://archive.fo/YZ7Xk#selection-1603.11-1607.1 to complain about, and advocate for higher donor quality. Then I emailed dozens more USA-based IBS and CFS researchers who were authors on papers listed in the wiki to see if they'd be able to run an FMT clinical trial with high quality donors. I emailed the major microbiome research centers in California. I emailed CFS and IBS advocacy groups to ask who I should contact. A journal editor advised me to contact American Gasto Assoc authors on IBS guidelines, and US authors on the Rome Foundation IBS guidelines - same for the CFS researchers. I did that as well and still no takers.

    From my view, anyone in a position to do something about it has their head up their ass. Among professionals involved in FMT/microbiome there seems to be a large amount of ignorance, apathy, myopic focus on one tiny piece of the puzzle, and resistance to reviewing relevant information and investigating its merit. There might be a few researchers who are the exception, but they don't seem to have the capability to run a clinical trial.

    I'm so sick of this. There's likely a cure right now, and it's easy as hell to obtain, given the right people try to obtain it.

    I contacted the Norweigian guys doing a CFS FMT study to share info on what makes a high quality donor and urged them to find one. I don't know if they bothered to do so and we won't find out till 2023 - when the study ends. I'm not waiting around.

    I'm going to start writing to newspapers now.
     
  2. I am curious, how did you get that .4% figure. I bet you are right, but I know that OpenBiome says their acceptace rate is closer to 3%. Thank you in advance for any collaboration.

    By the way, I did put in remision my ME/CFS using Fecal Transplant. My story is at Our2ndbrain.com if you are interested.
     
  3. MaximilianKohler

    MaximilianKohler New Member

    0.4% is from a Danish study where they accepted 3 out of 700 applicants. See:

    https://archive.fo/JmcMV
    and
    https://archive.fo/XUhyi

    I'm reading your DIY FMT report. I'll summarize for myself and others:

    * History of antibiotic use/abuse. Antibiotics caused harm and made you dependent on antibiotics. (A very common phenomena that I've experienced as well)

    1. Did enema-only FMT from son. Didn't see much improvement.
    2. Did oral capsules from daughter. Started seeing improvements by day 3. Did it at least 9 times and saw gradual, long-term improvements.

    My main questions would be about the differences in donor quality between the two donors you used. This is a full questionnaire that should give a better idea: https://archive.fo/s3Uwx. But lifetime antimicrobial use, and bristol stool type are some of the main ones.

    I'm also curious why you stopped at 9.
     
  4. My short answer is that I could feel a massive shift in metabolics (amazing body heat), and even hormonal shift along with neurotransmitters. Inflammation had subsided (returns with illness though) and my physical strength was back to normal. I used diet following the FMT to ensure quality of colonization.

    I was in a semi-manic euphoric state and based on my research it suggested that colonization would continue for the next 2-3 months. It did and the waves of manic-depressive kept getting shorter and shorter and finally subsided at about 2 months (regret not taking more detailed note).
     
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