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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

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MEBO Map Testing & Meetups

Full details :
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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

Thursday, November 13, 2008

email to NIH (ORD) and Wellcome Trust about a 3rd Trimethylaminuria workshop

An email was sent to the National Institutes of Health in the US and The Wellcome Trust in the UK about hosting a 3rd Trimethylaminuria conference. The NIH email was forwarded to GARD. An email has also been sent to ORD. There has been no reply as of yet. The NIH jointly funded the first conference/workshop (along with the Wellcome Trust), and presumably the 2nd also. At first it looked as if it would be a biannual meeting (the September 20 2001 scheduled conference was presumably postponed until 2002). Possibly there's a need for it to be an annual conference


there have been 2 trimethylaminuria conferences. One in 1999, the 2nd in 2002.

It's estimated about 1% could be at risk of trimethylaminuria, and the definition seems to have loosened over the years. Also, there are distinct differences in diagnosis testing by groups of testers in different countries, probably since there are so few testers. And with the maturing of the internet, sufferers are now surfacing in much greater numbers.

It would seem a good time for a 3rd conference.


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