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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 :
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
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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 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

Thursday, September 4, 2008

UK Trimethylaminuria testing options update

Latest on testing for TMAU without a Dr in the UK :

It looks like another supplier may enable UK residents (or international, but USA testing is much cheaper), to do the urine test for around £160 + a £35 charge. We will keep you updated. The £35 is their 'brokers' charge (basically if you can't get access to the test direct as medichecks now allow, you need a 'broker' instead)

The Sheffield Childrens Hospital test lab who does the TMAU urine test normally charges around £124 (last years quoted price, which if done through the NHS presumably is paid for by your Drs surgery). If you can satisfy them that you are testing under a Drs approval, that sort of price should be possible. It's a case of getting some sort of referral note/request form from a Dr (perhaps they have some sort of requisition form). Basically you need a 'broker'.

The Sheffield hospital also does the FMO3 DNA test. Last known price was £280 for NHS patients (presumably the Drs surgery can pay for that) or £392 for private/international patients.

Hopefully with some investigation we will find the easiest way to enable doing this test for free or the cheapest price if direct testing is the preferred option. Any feedback/leads are welcome.


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