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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

Saturday, April 14, 2018

Announcement: MEBO Mental Health Director

As part of the 2018 Annual MEBO Conference and Meetup currently being held at Savannah, Ga , it is my pleasure to introduce to our community the new MEBO Mental Health Director, Crissan Rosalia, Health Psychologist, Msc., coach and counsellor. Crissan has approached me numerous times asking for opportunities for her to reach out to our community, whom she would love to uplift and guide them towards helping them become more empowered and stronger emotionally and mentally to face the trials that result from living with an odor condition and/or PATM.

Crissan is a TMAU1 sufferer and member of the online MEBO Support Group, PATM Group, and RareConnect. She has opened many avenues for sufferers to get in touch with her, so feel free to do so. She’s truly a lovely person. Below is a list of topics she would like to write articles and do audio podcasts about for our community:

Crissan Rosalia's Bio
I was thinking about doing monthly topics. So every month we could pick a topic and I can post articles and audio (podcast) about the topic of the month, e.g. how to cope with bullying and harassment. I could also provide other relevant information, such as articles, video material, and worksheets with mention of the sources of course.

List of possible topics


- Work and Tmau (several subcategories: finding a suitable job, keeping a job, dealing with conflicts at work)

School, college and Uni

- Going to school with TMAU

Bullying and harassment
- Coping with bullying, harassment, comments and gossip

Talking about TMAU
- Breaking the silence: How to talk about TMAU
- Talking to family and friends
- Talking to your doctor
- Talking to strangers

Emotional and mental health
- How to cope with anxiety
- How to cope with feelings of depression
- How to build resilience
- Self-esteem
- Coping with Shame
- Trauma
- Emotion regulation
- Stress management
- How to stay healthy
- Coping with suicidal thoughts and feelings

- How do I know what I have, do I have TMAU, PATM or Olfactory reference syndrome?
- Getting a diagnosis (before, during the process, after)
- Negative TMAU diagnosis, but I still have symptoms. How do I proceed?

- Having and maintaining meaningful relationships
- Dating with TMAU
- Raising children

Thank you, Crissan for being the kind-hearted, compassionate and intelligent person that you are, and for being so willing to put your skills to uplift our community. I'm looking forward to reading all the information you plan to share with us.

email Crissan or


María de la Torre
Founder and Executive Director

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Josh said...

Thank you very much for offering your help with mental health. I'm sure many of us will benefit from it!

The list of possible topics already sounds very promising. Maybe it's a wise choice to first start with the topic diagnosis? Especially the question "How do I know what I have, do I have TMAU, PATM or Olfactory reference syndrome?" is important to ask and get an answer to.

Apr 14, 2018, 6:16:00 PM
Crissan Rosalia said...

Thanks for your feedback, I will definitely take your advice into consideration.

Apr 15, 2018, 7:34:00 AM
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