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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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to join : go to
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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 14, 2018

Mental Health Director's Topics: Crisis Prevention, Work & TMAU

The following are papers the new MEBO Mental Health Director has written for our community:


We all have been there, some of us admit it and some of us are ashamed to admit it. Fact is that a lot of us have experienced thoughts about suicide. Feelings and thoughts of suicides can occur when you feel hopeless, helpless and feel that there is not solution for your problems. The anguish, distress and pain is becoming bigger than your ability to cope with the situation. The only way out might seem like committing suicide... (Click on icon to see paper)

Work and Trimethylaminuria

Valuable tips for finding and keeping a job with Trimethylaminuria
Author: Crissan Rosalia
Mental Health Director, MSc. Health Psychology

Having a job when you have a malodor condition like Trimethylaminuria (TMAU), is not always easy. For people with TMAU, working can be very stressful. This is because sufferers are worried about offending their coworkers, they also worry constantly about getting fired due to their symptoms. Sometimes sufferers are bullied and harassed, which can create a tense work environment in which they feel powerless, depressed and anxious. Despite all of these factors, having a job can be very beneficial. These benefits can actually be regarded as protective factors which can increase the health and wellbeing, even of patients with malodor conditions...(Click on icon to see paper)

Worksheet 1.1 Working conditions

This chart is an overview of several possible work conditions you might consider when applying for  job or when you already have a job and want to evaluate or negotiate with your supervisor. Each column has a color, Green= YES, ideal job condition, Yellow= Maybe or negotiable, these are conditions you might consider or are optional, Red= NO or deal breaker, these are conditions that are not favorable. You can add your own conditions as well!

What type of work would you like to do?
Do you have the necessary qualifications (diploma’s, certificates and work experience) to apply for this job? If you don’t, what steps can you take to become eligible for the job you want to apply for?
On a scale of one to ten how motivated are you to keep working or start with a new job?
Are you willing to talk about your health condition at work ?


Crissan Rosalia
Mental Health Director

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