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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

Monday, May 4, 2009

Conference Call Topic: Being Social

In today’s conference call, we dealt mainly with the emotional consequences and coping mechanism of daily living with a body odor condition. Some of the emotional responses frequently expressed by body odor sufferers are the following:

1. A strong sense of pessimism;

2. Develop a perception that others are attempting to take away our humanity, our sense of self-worth through social rejection, sometimes in a very hateful manner;

3. Our capacity to love people and to establish relationships is diminished to a certain degree;

4. Social powers decrease at work, school, friendships, and even with family members who are non-sufferers

5. Our awry social development may very well manifest itself while we attempt to establish relationships with each other in this community, however being more aware of the impact of our common social experiences with this condition we can help each other other grow to become better social beings in spite of our past experiences.

We can’t focus on everything that surrounds us in life, so we have to choose what we want to focus on...Recommended coping mechanism within the community and outside:

1. Improve communication skills in our community by seeking to become involved in as many social opportunities as possible. This may be participating in "multi-dimensional" communications involving hearing and seeing each others' voice tonality and body language, as opposed to our customary one-dimensional communication tool of posting in a forum. The most ideal situation would be to participate in meet-ups, the seconds best situation would be participating in conference calls, and of course, continue to participate in the forums.

2. Change our focus to what’s really going on with people around us as opposed to self-centeredness in which we become the focus of our attention. Realize that people may be talking, laughing, and thinking about their own issues as opposed to about us at any given moment in time.

3. Eye contact: When we feel shame, we tend to avoid eye contact, thus sending a message that, “I don’t want to connect with you.” We need to change our social approach to having eye contact in an inviting manner, so that others may see our humanity.

4. Think positively: Avoid thinking in negative terms:
a. Negative: I hope I don’t stink today.
b. Positive: Today I will be stress-free and I will smell good as a result.

5. Strive to be independent of needing praise: Change from being an insecure person to a more independent one; and acquiring an ‘I don’t care’ attitude regarding the odor while in a social setting.

6. Strive to be a group of selfless people – focusing less on our individual selves and more on the big picture of where we would like our community to take us – toward physical and emotional healing

7. We chose what to focus on: We can’t focus on everything that surrounds us in life at all times, so we have to choose what we want to focus on, either on the negative or the positive. Which will it be?


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