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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, July 27, 2015

TMAU Testimony : StankGirlDiaries on Youtube

StankGirlDiaries is a Youtube user who is using Youtube to blog about her Trimethylaminuria (TMAU). This brave young lady started posting videos over the last few days and has already posted 3, which greatly help to raise awareness of TMAU.

Watch the first video below :  
Suffering in Silence: TMAU Body Fish Odor Rare Disease THE RAW TRUTH

Youtube Channel link : StankGirlDiaries



Trimethylaminuria. Genetics Home Reference. January 2013;

Phillips I, Shephard E. Trimethylaminuria. GeneReviews. April 19, 2011;

Professor Elizabeth Shephard's Presentation for the Miami Beach Meetup/Conference 2012 - Pharmacogenetics & Personalized Medicine

Professor Elizabeth Shephard TMAU/FMO3 slideshow presentation, Trimethylaminuria and FMO3 metabolic enzyme,for the MEBO Washington DC Conference 2011

You can also read the 11 posts written on the MEBO Blog under Label, 'TMAU management protocol.' Scroll down to the last one (first posted) and proceed to read the newer posts.

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A EURORDIS and NORD Member Organization


Henry said...

I have TMAU Type 2 and I was cured with a course of Fluconazole.

Unfortunatly the symptoms came back after having Antibiotics.

If you are having trouble being diagnosed it may be that you need to have a high choline intake before being tested. or it may be that you have a different disorder such as DMG (Dimethylglycine).

Good Luck
Hope this helps

Jul 28, 2015, 12:40:00 PM
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