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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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

Tuesday, August 14, 2012

Update on the work of the NORD research at the Monell Center

Our community is living in very exciting and hopeful times with all the testing and research initiatives that are currently taking place. We have come together from around the world and organized ourselves to raise funds for research, compile body odor and halitosis scientific literature, to initiate various Raising Awareness Campaigns in the US and UK, and have maintained close relations with our experts who have donated so much of their valuable time to assist and guide us.

After much promotion of the NORD TMAU Fund by MEBO Research, the TMAU Foundation, and Yahoo Forum, NORD granted the $36,000 raised to the Monell Center. Below is an update on the research that is being carried out by this lab.

Update on the work of the NORD research
at the Monell Center

As you know, the work is on target for completion in December 2012 and they have provided a status update.

The work being done is called Exome screening -- the examination of our genotypes in all protein coding genes. The geneticist(s) are doing a comprehensive sequencing job with these samples.

A subject population of 23 patients (whose phenotypes are known as a result of having previously been tested for TMAU) is being used.

new knowledge about the genes involved, TMA metabolism, Choline metabolism, the significance of gut bacteria, and heart disease is emerging.
In addition, ancillary evaluations are being done with some patients to substantiate some findings through analyses of their medical history and disease progression.

Besides examining the main symptom - the bothersome malodor -- new knowledge about the genes involved, TMA metabolism, Choline metabolism, the significance of gut bacteria, and heart disease is emerging. (Don't panic about the last bit -- it's all good. Several researchers are looking at whether people with high levels of TMA may have significantly less risk for heart disease.)

One significant finding at this stage is the confirmation that 'The range of odor symptoms may not be wholly explained by the known spectrum of genotypes in the FMO3 gene alone. There may be individual differences in other genes in the choline metabolism pathway that result in excess trimethyl amine.' (There are other genes involved, there most likely are other deletions and mutations yet to be discovered in known and unidentified genes as well. So, if you personally don't have much answers at this time, don't despair - we're all in the same boat.)

So, KEEP HOPE ALIVE. We are game changers all, people with this horrible condition who have battled to survive and thrive, despite the odds. We came together with the leadership of Cheryl M. and Amanda and raised critical seed money which is leading to a flowering that will benefit all of us in the TMAU and medical malodors community. We have a long way to go, but we will get there. Tech advances, the will to overcome, our advocates and emotional support are all combined to be our fuel.

This is indeed very exciting news! As knowledge expands on TMAU, the greater the opportunity for sufferers to target the specifics of their personal condition. This research that Monell is doing is essential for our community, and I am looking forward to seeing the results in December.

As Dr. Elizabeth Shephard, PhD, Prof of Molecular Biology, Vice Dean Ed., Biosciences, Institute of Structural and Molecular Biology, University College London, tells us in her PowerPoint presentation it is very important to study the genetics and metabolic processes of body odor sufferers to identify metabolic deficiencies to develop a personalized medicine regiment to be applied to each type of genetic, metabolic, and environmental cause of body odor conditions. It is most encouraging that the Monell Center is researching to obtain new knowledge about genes, TMA metabolism, and choline metabolism, as well as the significance of gut bacteria. All this knowledge can best identify the different causes of body/breath malodor in sufferers, categorizing them with the appropriate personalized medicine possible.

MEBO Research has been steadfastly compiling literature from professional sources in the MEBO Blog in hopes to promote research into all these areas since its inception in 2008. To date, we have compiled a total of 1,136 posts of literature as well as community functions communiques. For additional reading of the topics mentioned above, please see the following posts:

Genetics: (scroll down to see all posts)

Dr. Elizabeth Shephard’s PowerPoint Presentations

Metabolic deficiencies possibly involved in body/breath malodor conditions:

Gut microbiota and body/breath malodor:

Much gratitude to the Monell Center and everyone who donated to this and other research projects.


María de la Torre
Founder and Executive Director

A Public Charity
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Anonymous said...

This made me so happy!

Hang in there fellow suffferers.

Aug 15, 2012, 7:04:00 AM
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