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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 :
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

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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

Friday, January 6, 2012

Presenting MEBO UK's new Public Relations Director - Karen James

It is with great pleasure that I announce Karen James’ acceptance of the post of Public Relations Director of our not-for-profit Limited by Guarantee Company, MEBO Research (MEBO UK). Karen James led the way for our international community to participate in the Raising Awareness Campaign (Scroll down to see all posts) aimed at the UK medical system. As a result of her leadership, ten body odor questions on “Nutritional metabolic and endocrine disorders > TMAU” were published in the Database of Uncertainties about the Effects of Treatments (UK DUETs), and can be seen in the Library of NHS UK. Along with other two new directors who have also accepted the directorship for MEBO UK within these past few weeks, Adrian J McClay and the third soon to be announced, we have our eyes set on raising MEBO UK to charity status in 2012 as well as to continue with the Raising Awareness Campaign Karen launched in the UK. This is Karen’s forte – being an ambassador to our community, and her enthusiasm is highly contagious. She is a staunch supporter of the MEBO Research Petition that will be of great assistance to her in her Raising Awareness Campaign. So please sign this Petition in gratitude for her acceptance of this post.
Below are a few words from Karen to our community.
My name is Karen James and I’m delighted to take on the post of public relations director for MEBO UK. It’s very exciting to be involved with other people who share my enthusiasm for wanting to effect change.
I am driven; being really desperate and frustrated gives me great energy.
I’ve had the privilege of meeting quite a few sufferers of odour disorders and it’s fascinating how we are all so unique but all contribute positively to our community in different ways. There are those who have set up websites, those who contribute knowledge or words of encouragement to those websites, those who organise meet ups, cheer up others or do lots of networking, and those who offer specific skills to aid the organisations helping us in our fight for recognition, respect and research. Although I was only diagnosed as recently as November 2010, I’ve had TMAU, together with some other unidentified odour disorder, for probably 15 years. I’ve no special skills to offer but I am driven; being really desperate and frustrated gives me great energy. I can’t seem to control my odour effectively despite the drastic measures I take and the odour is strong and life-inhibiting. Even if my odour were controllable, I would still want to protest about the way we are treated and to try to instigate research into cures. I guess I like kicking up a fuss if I see injustice and I think the way odour sufferers are handled (or rather mishandled) is unjust.
Since March 2011, I’ve worked with some other members and, together, we’ve contacted numerous major medical organisations and dental establishments in the UK to raise awareness of TMAU and other odour-producing conditions. We’ve also tried to convince politicians to address our issues, such as classifying odour-producing disorders as social disabilities. We’ve tried to provoke research by asking patient safety agencies to examine the safety and/or effectiveness of the TMAU treatment protocol. I’ve approached ITV’s ‘This Morning’ programme and asked to be given airtime, I’ve offered story ideas such as ‘teenagers living with TMAU’ to the TV programme ‘Waterloo Road,’ I’ve offered articles to publications such as British Medical Journal, I’ve asked the Body Shop to promote MEBO’s petition and I’ve invited J.K. Rowling to give celebrity endorsement to the MEBO charity. O.k., so what if many of these initiatives have not come to fruition? Defeatism should not be in our vocabulary. Our conditions can restrict us and thwart our aspirations, I know, but I try to make use of my condition to develop other skills. Lots of us have good ideas and skills to share and it’s empowering to work alongside other people who are all united by one single aim. So let’s get cracking – things need to be changed and we are the only ones who can do it.
Thank you Karen for being such an enthusiastic ambassador. María and the rest of the MEBO Staff halitosis research María de la Torre Founder and Executive Director A Public Charity MEBO's Blog (English) El Blog de MEBO (español) The MEBO Forum Please sign the MEBO Petition
MEBO Research


Anonymous said...

We appreciate your efforts Karen, the whole community is proud of you.


Jan 6, 2012, 12:03:00 PM
Anonymous said...

Karen , You have been a major contributor to the community for a while now. Its great that its official .

Skunkhugs J

Jan 6, 2012, 2:23:00 PM
Anonymous said...

Karen, congratulations and best of luck in your new position. You are an inspiration to all of us. I hope to one day have your courage and determination.

Jan 7, 2012, 10:36:00 AM
Anonymous said...

Karen- your raising awareness campaigns have proven to move our efforts forward. We know from first hand how this destroys lives. Your tireless efforts are a perfect match with MEBO. Good Luck!


Jan 7, 2012, 11:36:00 AM
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