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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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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
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NORD Member Organization
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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

Saturday, January 24, 2009

Hair testing

When metabolic body odors and metabolic halitosis finally get attention from the health system, stage one will be trying to define what the problem is through testing. The technology is probably readily available in labs across the countries (say, at metabolism units in hospitals), it's a case of getting them to test for the metabolites (in the way that a very few test for trimethylamine).

"Drug and drug metabolite(s) are incorporated into the hair matrix from the bloodstream following drug use. Hair drug testing detects drugs that are embedded in the hair"

Labcorp site
Once that stage is reached, it's a question of how to test the patient. There are a few various ways. The most obvious would be testing for volatile organic compounds in urine, blood or breath. Another new(ish) way of testing is from hair samples.

This post is about hair testing. Currently drug and alcohol detection labs seem to use the various ways to detect drug/alcohol and are the most obvious labs on google searches of "hair testing". It's unclear if the health-system 'advisors' back their claims.

Taking the labs claims as accurate without question, the advantage of hair testing seems to be that it can detect compounds accumulated over days/weeks. Unfortunately no-one tests for likely 'smelly' compounds currently. A 'metabolic body odor' profiling test. Some check mineral status. Hair testing would be no use as 'spot tests'. For trimethylaminuria, first thoughts are that it would maybe be able to detect trimethylamine, but not trimethylamine-oxide.

Overall, the concept sounds useful but it's unknown how accurate the method of testing is currently regarded.

random links :
wikipedia : hair testing
Labcorp hair-testing lab for drug/alcohol detection
Pubmed 2001 paper on hair testing
Letter of reply from a lab re the Pubmed paper
Society of Hair Testing


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