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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

Scroll down and select country

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

Friday, September 5, 2008

Update 3 on the UK self-testing TMAU (urine test) saga

Emed have said by email they would act as 'referrer' for the TMAU urine test via TDL (the doctors laboratory). That would make the price of the TMAU urine test £160 + £20 annual membership of Emed + £15 Emed 'consultation' charge. A separate post will be done about Emed later. Unexpected procedural problems cannot be predicted at the moment, so unfortunately anyone choosing this route does so as a pioneer.

Presumed procedure would be like:
Join Emed (£20)
Tell them you want to do the TMAU urine test via TDL (£15 + £160 for test)
They contact TDL who send a kit out.
Presumably there is some sort of proof that TDL need that a Dr ordered it and this goes with the kit on return (?).

An important remaining issue is the testing procedure of TDLs TMAU urine test. They have been emailed about this and you will be updated once they reply.

The 'sample code' on the TDL site lists the TMAU urine test as being 'PU', which they list as meaning :
30ml aliquot from a 24-hour urine collection with 10ml of 0.1N hydrochloric acid added 
– state total volume TMAU urine test page sample code page

This is the same supplier that Medichecks use.

If anyone has any better ways to enable direct testing, please let us know


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