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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

Friday, December 26, 2008

Things are changing, by Cabel Hall

Things are changing in our lives and in our community. Look at all of the great things that are happening around here lately. It's amazing to see. It fills me with great hope for the future.

What is different now than before?

Well, it's not just that we are finally communicating with each other. Although we are communicating now more than ever, we have always had phones and email addresses and cars to go to meet ups.

No. I see the change happening within ourselves.

I see it when a new member comes in our group and this person is flooded with emails. I hear it when one of the "old timers" come on the conference calls for the first time and it is like talking to an old friend whose words have been with you for ages.

I see it in Maria who sacrifices much of her time to love us and I see it in Arun when he gets more and more assurance that he will finally be able to study this disorder when in the past he was hindered.

We are finally as a community thinking about one another before we think about ourselves. We are finally becoming friends...and friends hate to see each other in pain. We always want to help our friends.

Think about how far we have come in a year! Think about where we will be in 3 years from now.

Let me be very serious with all of you:

We will not have a cure unless we know how many of us there are in this world and what our symptoms are.

Treat it as a mission...treat it as your life's mission to find all of us that you can. Treat it as a mission to be there in the depths of despair with a fellow sufferer. They need you, and you need them.

I think about how far we have come and I think about how far we need to go. There are still those of us out there on the brink of suicide...there are some of us who just need someone to talk to who can FINALLY and TRULY understand what they are going through.

I see so much fear in us but I also see's just been buried under a mountain of insults and tears. It shouldn't sit well with any of us here that there are people like us who are languishing in fear and depression. It actually helps us when we help other people.

I am always amazed at how love can change us. It helps the lover and the loved. I am always amazed at how love can drive away fear.

Cabel From an MSN forum post


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