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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, August 13, 2025

AI meets MEBO

After a bit of a break since our first podcast back in March, we’re excited to return with a brand new episode for the MEBO and PATM community.

In this video, we’re exploring a big question: Can patients themselves use AI to help uncover potential causes, connections, and treatments for their symptoms?

The episode was generated by NotebookLM, based on our own research and the outputs of multiple large language models answering real questions from patients and researchers about these conditions. It’s a very good discussion overall - balanced, empathetic, and realistic about the challenges - but there are a few small hiccups.

For example, the video says that the paper "Cutaneous Bacteria in the Gut Microbiome as Biomarkers of Systemic Malodor and People Are Allergic to Me (PATM) Conditions" was published in Frontiers in Psychiatry in 2022. In fact, it appeared in JMIR Dermatology, a peer-reviewed journal, but one that isn’t indexed in PubMed - so it often doesn’t register in medical literature searches. Interestingly, when we asked half a dozen more LLMs about this paper, none knew much about it. Some even called it “groundbreaking” or “a beacon” without actually having the details, and a few hallucinated links that don’t exist.

PATM and MEBO are still often misclassified or linked to Olfactory Reference Syndrome, but there is growing recognition that underlying microbial dysbiosis or metabolic disorders may play a role.

Still, the bigger picture is encouraging: LLMs are improving, and that gives hope for people living with under-researched, heterogeneous, and often misunderstood conditions. While this podcast focuses a bit more on social and emotional support than on treatment options, that’s also an essential part of living with these conditions - and it makes this video worth watching.

Let’s dive in and see what AI can - and can’t - offer us right now.


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A EURORDIS and NORD Member Organization

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