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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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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
NCT02683876

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
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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, March 7, 2012

Odor originating from Metabolic Disorders


BO, Body Odor777.com, Causes of and Solutions for Body Odor, has a good list of some known metabolic body malodor disorders, including trimethylaminuria (TMAU), Hypermethioninemia (HME), Maple Syrup Urine Disease (MSUD), Phenylketunuria (PKU), Multiple Acyl-CoA Dehydrogenase Deficiency (MADD), Isovaleric Acidaemia, On the left sidebar, it lists internal causes, to name a few.

They define hypermethioninemia as,


Hypermethioninemia this condition can happen when methionine (amino acid) is not metabolized correctly in the body. Individuals with this condition may experience a fishy, sweety and fruity, rancid butter or boiled cabbage odor. It has been said that tyrosinosis-tyrosinemia is the same as hypermethioninemia.

Many if not most of the conditions noted in this list area considered serious diseases, and some are life threatening. We wonder if perhaps sufferers have elevated levels of one or more of the volatile organic compounds (VOCs), while still within the normal range; and the combination of these could possibly produce a strange odor that many describe, such as garbage, sewer, fecal, or burnt odor. This is what MEBO Research will attempt to study in the Alveolar Breath Research Study soon to be launched, as well as with our methionine test in London.

On the left sidebar of the BO777 site, they have an extensive list of internal causes of body odor. It is very possible that sufferers may have a combination of sources contributing to the difficulty in controlling symptoms.

What this site lacks are reference to published papers, so the reader is encouraged to do further research into these conditions from reliable, professional journals.

See other posts in this blog:
  1. Phenylketonuria and Maple Syrup Urine disease. Recognised bloodborne odor problems
  2. 1983 Paper: Profiles of Urinary Volatiles from 3 'odorous' Metabolic Disorders
María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

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