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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

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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

Wednesday, December 5, 2012

TMAU webinar with Dr Mackay, a great success

4th Webinar

Thank you to Dr Richard Mackay, FRACP, FRCPA, Clinical Biochemist at Canterbury Health Labs in Christchurch New Zealand for his informative lecture on Sunday, December 2nd, given to our community at 8:00 am on a Monday morning his time!

Dr Mackay gave us a biochemical explanation on the metabolism of trimethylamine (TMA) and trimethylamine oxide (TMAO) from the point of ingestion through the small and large intestines to the kidneys and urine. When TMAO (from fish) and choline betaine is consumed, some choline betaine is absorbed by the small intestine and goes in the portal blood to the liver. Some of the choline betaine and TMAO continue on to the large intestine and colonic bacteria converts both to TMA (odorous chemical), which also travels in the portal blood to the liver, where it is converted into TMAO (non-odorous state) by FMO3 enzymes. When there is a deficiency of FMO3 enzymes, odorous TMA goes into the main bloodstream and is excreted in the urine.

Dr. Mackay discussed...the use of instruments, such as Gas Chromatography, Liquid Chromatography, Mass Spectrometry, and Nuclear Magnetic Resonance (NMR), and how they are all equally accurate for testing TMAU.
Dr. Mackay discussed the various tools and methods used around the world to perform the TMAU Test, from describing the loads used, including fish, choline, or trimethylamine pills, to the instruments used for analysis. He explained in some detail the various methods used for testing human samples with the use of instruments, such as Gas Chromatography, Liquid Chromatography, Mass Spectrometry, and Nuclear Magnetic Resonance (NMR), and how they are all equally as accurate for testing TMAU.

An interesting point he made is that in the case of TMAU, all seafood should be avoided because it contains TMAO that is converted into TMA by colonic bacteria, other than tuna, which does not seem to contain TMAO. In addition, foods rich in choline betaine and carnatine should also be avoided because bacteria in the gut also converts these into TMA. Dr. Mackay concluded his presentation with a very interesting discussion on the genetics of TMAU.

At Dr Mackay's request, this webinar was not recorded.

Dr Mackay is the lead author of the publication, Trimethylaminuria: causes and diagnosis of a socially distressing condition.

Our thanks goes to Dr Mackay for his excellent presentation, to Rob Pleticha for hosting this webinar, and to everyone who joined in and raised interesting questions.

María de la Torre
Founder and Executive Director

A Public Charity
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