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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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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, April 20, 2021

UK Politician looking for 'disability ideas'

for UK readers ...
Vicky Foxcroft MP (UK .. Labour).
Shadow Minister for the Disabled.
Looking for ideas to form Disabled Policy UK.
UK readers can write (?)
You need to upload a text file

Vicky Foxcroft (UK MP ... Labour) is the UK Shadow Minister for Disabled People.
It seems she is looking for ideas to form Labour Policy on Disabled issues.

UK readers could therefore probably fill in this form about TMAU/FMO3/Metabolic Malodor etc.
Like most politicians, they are not very tech-savvy, and so you will need to upload a text-file rather than just fill an online form.
Using a PC (Windows), you could use Wordpad.
For Android or Iphone you may need to use a text-file app. 

TMAU is probably the most referred 'disorder' to Adult Metabolic Units, yet Vicky won't have heard of it, as no-one has told her. 
Metabolic Units test the referrals for TMAU, 90% will be (false) negative, so they will log that it's not a big problem, plus its trivial compared to all the other disorders they see.
It's a chance to get TMAU on her radar at least.

The chances of anything useful happening from it (other than awareness) are pretty slim, but better than nothing, and who knows ? 

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Unknown said...

Estaría bien hacer comentarios hacerca de tmau y demás tipos de malos olores para que el mundo se entere de que está henfermedad existe ,
Esto va dirigido con todo respeto a usted María , necesitamos a alguien que nos oriente y dirija para tratar de hacer un cambio y talvez alguien intenté ayudarnos

Jun 13, 2021, 10:17:00 PM
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