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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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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

Saturday, April 20, 2019

Crissan's Mental Health Column: Moving from Denial, Anger and Depression

Click to read article

APRIL 2019
MEBO Mental Health Column
MEBO Mental Health Director

Coping with malodor conditions or PATM Moving from Denial, Anger and Depression to Acceptance and Self-Acceptance

In her February Mental Health Column post, Crissan focuses on resilience and she offers an action plan to achieve it, depicting the different types of resilience, such as natural, adaptive and restored. She points out the effects stress and trauma tend to have on resilience over time, and elaborates on the concept of Locus of control, differentiating between internal and external locus of control. Two pages of this paper expounds indepth discussion on how to increase resilience, with step by step methods of how to develop it.

In this, her April article, 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 move from denial, anger and depression to acceptance and self-acceptance.

At first, he thought that he was imagining things, that people were not referring to him. Until one day he realized that his coworkers were looking and pointing at him, sometimes even pinching their noses. Some would cough loudly, open windows and spray the office space with air freshners. Stephan* could hear his coworkers talking about a smell, a penetrating smell that was apparent around the office space…

Stephan stopped all social activities, he stopped going to work, distanced himself from his friends and hardly ever left his house. After a couple of months, Stephan realized that something needed to change…

*This is a fictional character.

What are the possible issues one experiences when dealing with acute or chronic health issues?

- A sense of loos of control
- Financial hardship
- Relationship conflict
- Anxiety and sadness
- Uncertain future
- Loss of self-esteem
- Reduced quality of life
These are just a few examples…

It is wonderful to see the love and care with which Crissan takes her time to write these articles for us, with such careful thought and generous delivery of valuable tools we can use to improve our outlook and our lives. She gives her heart and soul to lift up our community so that each has the wherewithal to find happiness and peace in life. Thank you, Crissan!


María de la Torre
Founder and Executive Director

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