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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

Sunday, October 19, 2008



A publishing company has been found for our anthology. I’ll have more information on this in the next update soon. I need to inform them of what exactly the book will consist of.

There are two purposes for the anthology. One: all proceeds to the book will go to research for better treatment and a cure for what we have. Two: to show the rest of society who we are: that we are not monsters; that we have real emotions, desires, talents; and with our unity we will not silently allow this condition or the rest of the world to step on our lives without a fight.

There are several ways any member can participate in this project.
1) WRITING ONE OR MORE POEMS: The poetry must deal in some way with living with odor. There is no limit on length. Take a look at some of the poetry that have been posted.

2) WRITING AN ESSAY: We all have some type of nightmarish event (or even a humorous one) having to do with odor. The essay doesn’t have to be lengthy. In fact, just two pages will suffice, preferably no less than that. You can read my own four-page essay along with the guidelines on how to write one in this Poetry/Stories section. Even if you don’t care to go 100% by the guidelines, just write it the best way you can. Any mistakes will be corrected for you.

3) WRITING SHORT FICTION: If you would like to write a short story, please write one where at least one of the characters is suffering with an odor condition. The short story below that follows this update will be included in the book.

4) POSTED MESSAGES AND THEIR REPLIES: Certain posted messages along with one or two of their replies will be chosen to be placed into the anthology, but only after the authors have given their permission. If you’ve posted a recent message and you believe it would make a good addition in the anthology, please let me know the exact date it was posted and give me your MSN nickname, full name and what the message or reply is about. My email address

5) DRAWINGS: Our artist, Ben (superbenx2000), is drawing everyone’s picture that will be contributing to the anthology with your permission. The drawings will be placed into the book immediately following a person’s work. If you are participating in some way in this project and you would like to have your drawing in the book, please send your photo to Ben’s email address: You can also see his detailed instructions further back (Oct. 16) in this section. Also, give him your full name with your picture.


Essay and Short Stories Guidelines: Guidelines for writing your odor-related essay for our anthology

Tell your BO experience : be a part of an anthology of short stories and poetry


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