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

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MEBO Karen
at UK Findacure conf 2020

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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

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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

Sunday, September 11, 2016

Update: MEBO Metabolomic Profiling Research Study

Update on the
MEBO Metabolomic Profiling Study

On August 18, 2016, The status of the MEBO Metabolomic Profiling Research Study, NCT02683876 was changed from 'Recruiting' to 'Active, not recruiting.' This means that we are not taking any more volunteers for this study at this time. However, if you wish to be put on a wait list in case the results merit that the study continue forward, please express your interest in doing so via email at, Please do not call on the phone, as it is not always manned with a volunteer. MEBO has a wholly volunteer staff and no one has volunteered to answer the phones at this time. Your email will be answered in the order in which it was received. Thank you for your consideration to this matter.

As of today, Sept 11th, the University of Alberta lab has received 10 samples in good condition, 2 kits were returned as undeliverable to address given, and the lab is still waiting for the 15 outstanding samples. Everything is at a standstill due to the 15 outstanding samples. If you are an active participant in this study and have already received your kit, please return your samples as soon as possible because analysis of all the samples will be carried out once all have been received by the lab. The sooner you send in your samples, the faster we can move forward with the study. If you have changed your mind and do not plan to ship your sample, please let us know so that we can take this into account. Thank you.

Since this is an exploratory study, there is no guarantee that significant results will arise from it, but as MEBO has stated in the MEBO Mission, we are committed to pursue research not only into TMAU, but also to try to discover other causes of uncontrollable body and/or breath odor conditions.

MEBO Research’s Mission is to initiate formal scientific research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis conditions, including but not limited to Trimethylaminuria. In addition, studies will be initiated to analyze and categorize gut microbiota and to characterize the genes that the microbes are expressing in an effort to identify and understand microbial communities that could produce malodor symptoms, and to identify effective targeted course of treatment to control symptoms, and preferably cure the condition of our international body odor community.

I thank all the volunteer participants in this program for their contribution to this cause.


María de la Torre
Founder and Executive Director

A Public Charity (em português)
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