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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

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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

Wednesday, July 10, 2019

Crissan's Mental Health Column: Breaking the patterns of shame

Click to see article

JULY 2019
MEBO Mental Health Column
MEBO Mental Health Director

Breaking the patterns of shame

In her April Mental Health Column post, Moving from Denial, Anger and Depression to acceptance and self-acceptance, Crissan describes very real experiences sufferers go through and the impact it has on mental health. She then provides a very helpful explanation of how a sufferer can accomplish this process of healing.

In this, her July article, Breaking the patterns of shame, Crissan expounds in a very clear and easy to follow manner how shame and guilt can shape our lives in such an adverse manner,

Shame is an emotion that can become very heavy. People who feel ashamed might feel like they have broken moral and social laws, and like they have disappointed themselves and others. As a result, they create a negative self-image, they feel powerless, worthless and isolated. Even though shame can have a positive function in society, for sufferers of a malodor condition the continuous experience of shame can be very harmful. It becomes toxic and they may develop a shame-based identity. (Bradshaw, 2006).

Crissan explains just how deeply shame affects us,

Shame and guilt are often mixed and misunderstood. The simplest way to explain the difference is Shame- “I’m wrong, unworthy” and Guilt- “I did something wrong”. So the difference is in “being” and “doing”.

We are most grateful to Crissan for providing us with an action plan that is aimed at helping us grab a hold of this driving force and conquer it. In the process, we become more empowered in our lives as we move forward toward pursuing proper treatment for the odor/PATM condition.

As a community which is very heavily laden with so much shame, we owe so much to Crissan for having taken a significant amount of her time to prepare this paper for us. Her genuine concern for the well-being of each member of our community is so present in everything she steadfastly does for us. As a fellow TMAU sufferer, Crissan understands the depth of injury these conditions cause, and she has dedicated herself to help sufferers regain control of the mental health and their lives. For this, we thank you, Crissan from the bottom of our hearts.


María de la Torre
Founder and Executive Director

A Public Charity
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