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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 :
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

Thursday, March 22, 2018

MEBO Database: A message from Karen

MEBO's Public Relations Director in the UK, Karen James, is working on expanding the MEBO Database of sufferers who may be interested in participating in research and testing. This database consists of sufferers who have already done their TMAU test, or any other diagnostic test ordered by their health care provider in pursuit of better understanding and management of odor condition.

At this time, we ask those who would like to be included in this database to be willing to share those results only when and if it is necessary for a particular study. As announced in this blog, there are currently two active research projects in place right now, so anyone wishing to share their results with MEBO to support this research could do so, as Karen mentions below.

Your privacy is of the utmost importance for MEBO Research, 
and all measures will be taken to protect it.

Below is a message from Karen:

MEBO Research have a database of people who tested for TMAU in any lab in the world and participated in the three MEBO Clinical Trials via their organisation. This list could be very useful for when scientists are interested in recruiting research participants at short notice. We are hoping that such an opportunity could arise very soon, and we want to be ready for it by having an extended list of potential volunteers with an odour problem. If you would like to be added to the MEBO database, which holds records of odour sufferers from around the world, then please send your details to or If you don't have a positive diagnosis, you can still send in your details and they can be recorded for future use.

Information needed is:
1. NAME as it appears on the test results forms,
2. Date of birth for identification purposes (helpful when names are common)
3. Address, including country, phone number, and email address. The address and phone number would facilitate the process of shipping kits if necessary.
4. Test type, i.e., TMAU test with NHS, MEBO Volatile Organic Compounds in Alveolar Breath Study, Biolab Study, tests noting hormonal imbalance or gut disorders, etc. (as many different types of tests they think may be significant to consider for an odor condition including, but not limited to TMAU).

optional information:
Odor type and whether constant or intermittent
Triggers ( hormonal changes, such as menstruation, thyroid problems, trigger foods)
If positive for TMAU, did the TMAU diet work?
Do people experience allergic reactions to you?

Please be a proactive part of the MEBO Mission. Be part of the solution to the suffering those afflicted with these conditions are going through!

Thanking you all in advance and thanking Karen or her most influential work,


María de la Torre
Founder and Executive Director

A Public Charity
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