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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

Monday, July 21, 2008

Alice Mata 1999 self-published TMAU book : When bathing is not enough

This is thought to be the first autobiography by a trimethylaminuria sufferer: Alice Mata. It looks like the book was published and written on her own initiative around 1999.

In her captivating literary style, Alice valiantly brings her readers to the depths of her shame-filled world of body odor. Being ahead of her time, she pioneers the road for all sufferers and non-sufferers alike to find words to express the heart-wrenching struggles and challenges of living with the alienating condition she faces day after day. Through her autobiography, Alice heightens awareness of the systematic emotional and social estrangement sufferers are forced to endure as a result of the profound ignorance that exists regarding this condition.
I awoke early to a beautiful summer day, and felt a great surge of love as I heard my children going about their morning routine. My oldest son, 18, getting ready for work, and my other son, 16, and daughter, 14, getting ready to go to Band practice at the Local High School. I should get up and fix them breakfast, I thought, but once again, a gloomy, heavy depression begins to engulf me, as many embarrassing incidents come to mind. Over and over, I ponder each one, analyzing and trying to find some other reason or explanation for each occurrence; hoping in vain that I misinterpreted the clerks in the stores, the waiters and waitresses in restaurants, the girls at work, some of my neighbors, relatives, some of my children's friends, and all the many other people I have encountered over the years, who have either by action, comment, or innuendo, led me to believe I smell bad. I remember the humiliation each time I pretend not to notice, the despair at not knowing what it is or what to do about it, and the indignation when they right away conclude that perhaps I don't bathe or use a deodorant; for you see, I am one of those few unfortunates who, despite fastidious grooming, and careful use of the best known brands of deodorants, still suffer for the very hush! hush! problem of body odor.

This book may still be available on sites like Amazon and Ebay, or you can buy it from the original publisher. There is also a downloadable Ebook version :
the link should work if you paste the full address into the browser address bar

other sellers
Amazon USA : When Bathing is Not Enough entry for Alice Mata: When bathing is not enough


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