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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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to join : go to
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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

Monday, March 5, 2018

Agenda Annual MEBO Conference & Meetup

Update on the Annual MEBO Conference & Meetup, 13-16th April.

This year's conference will address the following two questions:
  1. Why do I smell and/or PATM?
  2. What can I do to control the odor in a healthy manner?

These are the two most constantly asked questions in our community on a daily basis throughout the year. I suppose that if there was a clear cut answer for each and every cause of body/breath odor condition, or of any other chemicals that some non-sufferers can detect only with allergic reaction even though their olfactory system doesn't smell them, then a sufferer organization like MEBO would not have to exist. There would no longer be a need to pursue research. We would have all the tests at our physician's disposal to use to arrive at a diagnosis, a precise treatment, and a cure.

As exciting as all this research activity is, it doesn't begin to scratch the surface of the needs of all sufferers in the here and now around the world!
As we all know, there are no test readily available in the medical field in any country that is geared towards diagnosing the cause of each and every type of breath/body odor condition. There are no ongoing large scale clinical trials aimed at attempting to identify at least some of these conditions. We are most fortunate to at least have had very few clinical trials that Irene Gabashvili has carried out through the years with MEBO, the ones Danny Kunz and his Citizens Research Group have been carrying out in Germany, and now Dr. Ron Wevers is talking about in the Netherlands regarding halitosis. Thankfully, Prof Elizabeth Shephard completed Phase I of the UK Medical Research Council funded project, “Therapy for the body and breath malodour disorder Trimethylaminuria (TMAU)”, and the Monell Center completed their study on the genetics of TMAU. (Scroll down to see all posts on each of these links).

We now look forward to hopefully being accepted for research by the U.S. National Institutes of Health, All of Us Initiative, and hopefully, to establish new relations with heads of the NHS medical system to promote more targeted testing and research opportunities in the UK.

As exciting as all this research activity is, it doesn't begin to scratch the surface of the needs of all sufferers in the here and now around the world! Therefore, I continue to receive daily emails and messages asking the two primary questions noted above, which will now be the agenda topic of the MEBO 2018 Conference. The answers will be as limited as the amount of research done, but even the relatively little amount of research completed has provided us with some answers and some professional guidance with the aim of at least reducing odor symptoms and alleviating the struggles sufferers face on a daily basis.

So please, come and join us. There will be expert presentations via videos/PowerPoint presentation, handouts, and lots and lots of group discussion. Thankfully, some sufferers have managed to control their odor symptoms for years now, and this is something we would like to address in a group discussion. Please be prepared to share your thoughts and questions in a group discussion during the latter part of the conference. Come prepared to share with us what has worked for you and what has not. This is the best way for all the information written in this blog (over 1,500 posts) and information shared in the support groups to be best understood by sufferers - through group discussions and guidance on how to use the information provided by MEBO.

See previous post announcement of this Annual MEBO Conference & Meetup, Savannah 2018


The MEBO Conference will be held at 12 noon at the Fairfield Inn & Suites by Marriott on Saturday April 14th at 12 noon in the King Suite. If you have not yet booked your hotel room, please do so asap in order to avoid room rate increases. The address is:

Fairfield Inn & Suites
By Marriott
17027 Abercorn St
Savannah, Ga 31419
912 925-5050

Check in to your room is at 3:00pm and check out is by 12 noon. If anyone attending the conference needs to store your bags at the front desk, they will do so for you. You can also bring some of your things to hold in the Conference Suite if you prefer, subject to room available. Meanwhile, until your room is ready, you can join us at the MEBO Suite where the conference will take place. This way, you won't have to rent your room for the day before, unless you want to arrive on Friday.

I have been informed that the hotel offers complementary breakfast for all its guests.

I hope to see you all there!


María de la Torre
Founder and Executive Director

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