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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
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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

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Blog Archive

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

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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