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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

Thursday, October 30, 2008

Poem: '4 walls', by JMF

I am bound by 4 walls
Walls that are both my prison and my sanctuary
But what are the crimes to which I have to pay
Where is the root of my evil
I am a criminal to society
I live in a room with windows I cannot open
And stuff towels underneath doors so that my crimes may not seep below

I am in a prison condemned to by self
Self loathing
Like a murderer I am almost inhumane
More like an animal

My stench is my weapon
Of which I’ve ravaged many lives
Don’t come near her that beast
The killer of special moments
She is not remorseful in continuance of her serial ways, they say

People fear me
Lock their doors and windows so I may not come in
They run to the safety of clean fresh air
Clenching their noses in defense with what ever they may have on hand

To those in the outside world I am more than just a criminal but a threatening disease
I walk into a room and I surround them with my army of scent
As they are surrounded they cannot hide from me as I cannot hide from myself
I find a way into their nose hindering breath and inhalation

My only solace from being a plague to the outside world is the very walls which keep me captive
Walls to which a sole I may never have to see me until I pass the threshold of my room
These walls protect me from my victims as they protect me from my attackers
I’m comfortable here locked away
I worry not
Some days I may pass without a morsel of food or a drop of drink
I just lay in bed
Food and drink don’t nag at my desires
I only think of them when the coast is clear
When I may trapes in the isolated dark hallways of my home
Like a thief in the night

I long very much to leave my safety net
But like the sex offender I know I am unwanted
What are joyous moments of freedom in the faces of disgust, horror, and distaste

But as easy as it would be to stay behind these walls
At times, however, I have no choice but to leave them
I am bindded by bills as I am bindded to pay my debt to society
But the society which mocks and judges me
Does not allow me a method to successfully do so locked away

As a result I am going deeper and deeper into debt
I cannot provide for myself
Not many employers hire criminals
And those that do also employ others who batter me daily with the sharpness of their words

This is my life
A life that consists of 4 walls and what is beyond those walls
Solace within and terror outward
This is the life of a prisoner of self
Prisoner to the crime of T M A U



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