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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

Saturday, May 29, 2010

UK Group Meetup, London

body odor london meetup may 2010

On Saturday, 22nd May 2010, the UK Group held a meet-up at the Tattershall Castle at the Victoria Embankment in London where they had good food, good drinks, and great company. Jan (snoopy), who organized this gathering tells us about their expirience:

Hi All,

We had a great day (and night!) out. The weather was great so we met on the top deck outside in the sunshine and enjoyed a chat and a few drinks. The boat was busy but that didn't stop us all enjoying ourselves or talking openly about our conditions, experiences and things that work for each of us in our diet and with supplements etc and swopping tips.

...thanks so much for joining us-- you were like a ray of sunshine and gave me a real boost.
There was a small group of us-- 8 in total who came and went during the meet up. We started at 1pm and the last ones standing left about 10pm ( I think I had slight sun stroke as I was bit rough the next day!) We started on the top deck and had some food etc and then had to go downstairs under the cover of shade and to cool off-- the sun was so strong that some of us got a bit sunburnt-- can you believe that in the UK! We had no adverse reactions from anyone else and just enjoyed each others company.

One of our members gave out some of the probiotic samples Maria kindly sent over for us from the Nashville meet up. We'll all be trying those out and giving feedback on how we find them. This is the the 6th time I've attended an organised meet up and not been able to detect any odour at all from anyone-- still can't really understand why that happens but can honestly say it does.

Thanks to everyone who came along for making the day enjoyable. It was lovely to have two new members attending. Natalia -- thanks so much for joining us-- you were like a ray of sunshine and gave me a real boost. Hope to see you all again in September-- everyone is welcome and hope more new members can join us.

Cheers, Jan x


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