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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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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

Tuesday, January 27, 2009

Orphanet and list of potential contacts for trimethylaminuria help

Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact.While it is very difficult to find known testers of metabolic body odors and/or halitosis, the technology is probably readily available worldwide in, for example, hospitals. Detection of the smelly compounds probably being possible using a gas chromatography/mass spectrometry machine or by Proton NMR spectroscopy or similar. These are usually present in metabolism units in hospitals, usually for pediatric units or adult metabolism units. With something like trimethylamine, it's presumably a case of them calibrating the GS/MS to look for that. For those who feel trimethylaminuria doesn't seem a sole answer, they could possibly be tested for any volatile organic compounds rather than just trimethylamine, or just malodorous volatile compounds. Orphanet seems to be a European based website giving information on health problems and possible connections. In their section on TMAU, they have a list of 'clinics' and 'diagnosis centers'. On first glance most don't seem to list trimethylaminuria, (although more do than expected), but they all seem to be metabolism units of some sort and will have the technology. Usually they use them to detect amino-acid disorders or organic acids. Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact. These links (and the ones in the sidebar in the section : "Peer Evidence for Experts") may be helpful in persuading them about trimethylaminuria and it's prevalence :
Listed contacts for trimethylaminuria on Orphanet Orphanet trimethylaminuria link : clinics Orphanet trimethylaminuria link: diagnosis


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