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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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Blog Archive

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

Monday, November 21, 2016

UK Sheffield statement on TMAU urine test

Sheffield Children's Hospital is the only source in the UK for the TMAU urine/phenotype test.
Recently it was suspended with very little detail given.

UK support group website was notified on Friday about the new info.
A statement on the SCH website about the suspension

TMAU testing

Please note, due to analytical issues, the Trimethylaminuria (TMAU) laboratory service is temporarily suspended. This does not affect the clinical referral service.

We fully understand the importance of the Trimethylaminuria (TMAU) testing service and are committed to continuing it.

Since the founder of the service retired two years ago, we’ve invested in new staff for the service and purchased a new specialised testing machine.

Unfortunately we have had some technical issues in recent weeks and have temporarily suspended the service while repairs are made to the machine. We are doing everything we can to get the service up and running again as soon as possible, because we appreciate how much a reliable service matters to the patients we work with.

All the samples already sent us are being stored appropriately at -80 degrees and will be tested as soon as the testing service is restored.

In the meantime, we’ve written to the laboratories and doctors who request tests from us, letting them know about the testing services available outside the UK. We are also pushing through our networks for further testing centres in the UK, to ensure a more resilient service for patients requiring the test.

We hope to restore our own service shortly.

If you would like to be contacted when the service is restored, please give us your email address using this simple form.

Be notified by them when test restarts : Sheff TMAU test restart notification 

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A EURORDIS and NORD Member Organization


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