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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

Scroll down and select country

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

MEBO Private Facebook Group
to join : go to
or contact
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

Wednesday, October 15, 2008

A word of admiration from Maria to this great Community


It amazes me how very driven this community is to find a cure. We have realized that this is probably the only real beam of hope we see that may lead us to a cure, and thus we somehow manage to muster up from who knows where energy and time. We have been screaming so much in the dark lost with no direction and with no hope for much too long. Now, we actually have a plan - a good one at that. It may just work... WE'RE NOT USED TO HAVING TANGIBLE HOPE, ARE WE???

I can appreciate that Arun, Ben, Richard, and my lady friend in the UK, and so many others are so very busy with their jobs, school, and medical conditions, and yet they are making time for the final stages of the anthology, such as the paintings, writing a preface, and the publishing process; making time for establishing a charity corporation in the UK with affiliations in the US and Australia; for arranging meet-up sites, and to help others write a cookbook and to post in our blogs, etc. – and the list goes on and on.

I know that we may be feeling stressed, perhaps even some anxiety, as we see this process shift from fantasy to reality. We are taking steps - one step at a time, and are carrying out a real action plan that is unfolding before our very eyes, and we are witnessing an organized effort from people throughout the world in this endeavor! We all know that as this phase is completed, we will then only be face with the new challenges of actually carrying out the fundraising projects throughout the world, no less. And we will persevere! As the saying goes, "Bravery is not the absence of fear, but what we do in the face of fear!"

We can make it happen, folks; and we are making it happen one step at a time! Yes, it feels like we're climbing Mt. Everest, but we're halfway there! We have already organized ourselves as a strong body of sufferers, we have participated in large numbers in a scientific questionnaire, and now the experts are conferring to draw up a more refined research survey as a result so that we may participate in this one as well.

We have also had participation from experts, particularly from Arun Nagrath, Dr. Detlef Werner, and now from Dr. Robin Lachmann who will soon answer our questions regarding TMAU. Folks, we have only accomplished all this in less than half a year! Our blog only went live on May 26, 2008. And the MSN Body Odor forum was revamped in less time than that, and the anthology has been in the works in even less time. This is only a reflection of the desperation and of the drive we feel to find answers, to find a real treatment plan, and to find a cure.

We need to give ourselves a well-deserved good pat on the back for a job well done, and to give each other a pep talk to keep up the momentum. We also need to extend our hands out to all sufferers to ask for additional assistance in these endeavors. We need everyone's contribution in this quest for a cure, and no one is insignificant here, we can all contribute in one way or another, for we are ALL looking for a cure!

Outstanding job everyone! We're a great people!!!


For additional information on the charity corporation being filed in the UK, see A charity corporation is being established in the UK for BO & Halitosis research

And for additional information on the anthology see Tell your BO experience : be a part of an anthology of short stories and poetry

Dr. Detlef Werner's paper in German: Yahoo Trimethylaminuria forum files

Dr. Detlef Werner's paper translated into English: TMAU Hints for a new therapeutic option with Desmopressin - translation into English


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