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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

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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

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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, August 1, 2019

USA TMAU Petition reaches 1000

A TMAU petition started in Jan 2019 has reached 1000+ signers

It is mainly for the USA (to POTUS)
but is also for the world.

It goes to show how a petition in the right place on the internet (i.e. perhaps gets a good google ranking) can passively get the signatures without people noticing.

USA (and world) TMAU Research Petition on 

Also ...

Some thoughts on Petitions
Petitions will be trial and error.
Some will take off while most won't.

Each time we will learn more about the 'art'.
Who is the petition to ?
(a good target is good. A decision maker or makers ?)

What's it about ?
If it's about metabolic smelling, maybe just stick to just that ?
met-bo will be completely new to them, so maybe separate other conditions ?
e.g. if you say BO/halitosis they might think normal BO.
Metabolic is a completely new concept to them.
The petition starter can do whatever they want !

What do you want to happen ? 
Can be general, such as acknowledge or ask for research funding.
Could put in 'simple' actions, such as meet with the head of NIH.
Request TMAU test to be a consumer test etc.
Maybe a long-term goal and short-term simple goals.

Any petition is a bonus. 

Some petition sites
Whitehouse USA ... 30 days to get 100k signers infinite time ? petition ... 6 months to get 10k 

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