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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

Full details :
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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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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 23, 2008

Last night’s Women’s Conference Call : A Synopsis by JMF

For those of you who haven’t taken part in the conferences, or missed on the opportunity of being in our most recent conference, we sure did miss you all. There were about 8 of us present for this latest women’s conference. This consisted of those who spoke and those that just listened. I’d like to say for those who don’t participate in conferences because they will not speak that you‘re missing out because you do not have to speak to participate. You do not even have to introduce yourself, it’s okay to just listen on the line.

During this conference great information was given on the condition, including treatments to try, and example is ph balanced soaps that worked (for others). Some even asked questions? Other’s told of the things that were going on in their lives, body odor related and otherwise, because our lives are more than just odor. There were encouraging words given.

Overall it was a great and warm meeting where if one chooses, they were able to freely be who they truly are and express themselves in a world where we sometimes fear to express how we feel and what we go through out of the shame that comes with the condition. And for those that are still not quite comfortable and wanted more information, as well as learning how to better cope with the condition, they could listen in to others being positive.

There will be another conference Sunday afternoon at 2pm eastern time. Please refer to Maria’s blog for information on how to phone in. Thank you. I hope to see you all then, and put more stories, emotions, tips, etc., to all your wonderful posts.

Further Discussion:

I’d like to say this being my first conference that I was a bit nervous at first, putting voices to screen names and posts, however it was a relief to actually hear those that were going through the same things I was going through. I had never imagined that I would have the opportunity to find someone that can relate to me. Much of this is because of the shame I have for my condition.

I’m not even comfortable even talking to those closest to me about the way I feel. So I keep it all bottle up inside until i'm so depressed I contemplate suicide. That is why I wanted to start a discussion on shame and how we feel about shame and our condition? To start us off, a couple of people toward the end of the call started discussing the topic, and here is some of the stuff they said:

Speaker 1 :( Not direct quote)

There is a correlation between shame and power.
We care about our peers
Therefore in our minds we make them the powerful ones
We empower them to make us feel ashamed
They’re just like us
Somehow it is we that make them powerful
Why? Because we want to be loved by them and connect

Speaker 2:

There’s that cutoff [barrier] where we don’t have that ability
To understand that process we’re going through
Emotional circles
But we first have to go through that process of emotion

Speaker 1:

A lot of people are still scared
That cutoff is so severe
It’s a whole failure that we learn that we cannot connect
That comes back from the first time that we felt we cannot connect
It’s so painful
Baby in a crib touching something that’s soft and nice
Then it turns out to be a rat and it bites it
Later on mom has a fur coat on and that child is still afraid because they associate the soft fur with the rat
Or fail to disassociate
Just like when others are mean to us and demean us
We come to fear everyone
On this forum we are on the same boat
But we fear each other
The barrier we took it further than where it should have been
No one has to know your name, nothing
You are free to be yourself
It’s about breaking down those barriers

Speaker 2:
A lot of time when callers get off
We're very deep in the conversation
So deep we really get into the heart of the matter
It’s therapeutic
A lot of time we don’t feel comfortable
We introvert ourselves because of the way we are
And this is the time to be extroverted, to express ourselves
I find this conference to be a therapy session for us.


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