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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

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



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

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
NORD Member Organization
See RareConnect TMAU

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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

Monday, January 29, 2024

Living with MEBO

In the recent study by Cole and Drs. Shephard, Phillips and Janmohamed, in collaboration with our MEBO Research, the emotional landscape of living with MEBO/TMAU is laid bare, revealing a world where individuals are often met with misunderstanding and social exclusion. The respondents, all navigating the challenges of TMAU in the UK, shared heart-wrenching experiences of bullying, ostracism, and a profound lack of empathy from others. The workplace (36 respondents, 90%) and social settings (35 respondents, 88%), places where support and acceptance should thrive, turned out to be the most common arenas for these painful encounters. This societal blindness to their struggle not only amplifies their emotional burden but also deepens their sense of isolation. The survey uncovers a poignant truth: living with TMAU is not just a physical battle but a relentless emotional ordeal, marked by a constant struggle for acceptance and understanding.

The emotional turmoil doesn't end there. The study highlights a critical dilemma – to disclose or not to disclose their condition. For many, this decision is a double-edged sword. Revealing their condition might bring some level of understanding, yet it also risks further stigma and exclusion. This uncertainty breeds a unique kind of loneliness and stress, where the fear of judgment constantly weighs against the hope for empathy. The findings underscore a desperate need for a shift in societal perception and support structures. It's clear that these individuals are not just battling a metabolic disorder but are also fighting for their place in a society that often overlooks the invisible hardships they endure daily. The call for greater awareness and mental health support resonates through each response, painting a picture of a community in urgent need of empathy and a deeper understanding of their struggles.


Flaherty CC, Phillips IR, Janmohamed A, Shephard EA. Living with trimethylaminuria and body and breath malodour: personal perspectives. BMC Public Health. 2024 Jan 18;24(1):222. doi: 10.1186/s12889-024-17685-w. PMID: 38238734; PMCID: PMC10797923.

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