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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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
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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

Tuesday, December 10, 2019

London 14 Dec : TMAU Winter Wonderland Meetup

Meetup London Saturday 14 Dec
Marble Arch
Visit Winter Wonderland (free) 

Karen from MEBO UK is again organizing a winter meetup in London.
She also tells of a survey for Genetic Alliance UK (closes 8 Dec)

OR CALL 07505 590972 IF LATE
REMEMBER meet up on Saturday 14th December at Marble Arch 4pm. Entrance to Winter Wonderland is free!


Also ...
Genetic Alliance UK Survey

TMAU and MEBO UK are registered with Genetic Alliance UK.
If anyone would like to do this survey, it could help raise awareness


My name is Amy Simpson and I am a researcher at Genetic Alliance UK. You may have heard about 'CONCORD' - an NIHR-funded research study about coordinated care for rare conditions, which we are undertaking in collaboration with University College London. A key aim of the study is to find out how care is currently coordinated for those with rare conditions and how it should be coordinated in the future. This is an important piece of work, which we hope will provide valuable evidence to inform future policy.

If your organisation represents families affected by rare conditions, it would be great if you could share this information with your networks, to encourage them to take part. We need as many patients, carers and healthcare professionals as possible to share their experiences and views by completing our online national survey ( They must be 18 or over to complete the survey. If they are under 18, a parent or carer can complete on their behalf.

The survey closes on Sunday 8th December.

You can read more about the survey and study here ( You can also download a social media toolkit from the webpage, which includes suggested social media posts, infographics, hashtags and key information to share with your community.

If you have any questions, please do not hesitate to contact me directly.

Thanks in advance for your support with this important work



Dr Amy Simpson | Senior Researcher
Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH
T: +44(0)20 7831 0883

Karen's metbo relaxing workout

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