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

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at UK Findacure conf 2020

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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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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
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NORD Member Organization
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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

Thursday, September 17, 2009

Topics discussed in the London body odor and halitosis meet-up: Research strategies

Many discussions regarding BO conditions took place in our annual Meet-Up at the Thames Festival, and I would like to share these with those who did not have the opportunity to attend. This particular post deals more with the research needs of our community. Some of the attendees are professionals while others are not, but all are sufferers who have put forth a keen effort at many levels through the years to try to make sense of our conditions. would be helpful to address our condition...through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other...‘think out of the box’...As mentioned in my previous post, it is remarkable how many of us seem to have other similar medical conditions ranging from digestive problems, such as chronic abdominal bloating and irregular bowels, to skin problems, such as dermatitis, rashes, psoriasis, and eczema, while a significant amount of us also suffer from allergies, chemical sensitivities, autoimmune diseases including rheumatoid arthritis and lupus, and neurological conditions such as epilepsy ourselves or in our families.

We all found it to be very interesting that not everyone benefit from the same protocol, particularly the same diet. Some of us benefit tremendously by a low choline diet, while others are able to eat more choline as long as the diet would be generally low in protein. Others benefit from a low dairy diet, and still others from a low sugar/carb diet. And unfortunately, a few have to be in more than one of these diets, making their situation even more difficult.
This is the way our discussions went:

Once the compounds and genetic pathways are classified and linked, it is through this ‘link’ that we would best be able to determine what constitutes the various types of body odor...
As one of the members puts it, it would be helpful to address our condition from two main ‘focal points’, through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other. It is important to ‘think out of the box’ in these studies, because perhaps we may very well still be ‘missing it’ and have not yet fully identified the full picture of most of the different body odor conditions.

What are the logistic obstacles involved that prevent us from achieving this? Financial and even technological restrictions are the culprits. As Arun points out, we would need such a highly sophisticated and sensitive instrument that could detect, identify, and quantitatively measure the smallest compounds in our blood that could in theory be producing odor.

The reason emphasis is placed on the technique of analyzing the blood over urine, sweat, or breath, is to preserve the state of the compounds before they pass (or are filtered through or contaminated by) the sweat in the skin or through the breath’s exposure to higher oxygen or CO2 levels, which may potentially alter it in some way.

Once the serum compounds and genetic pathways are classified and linked, we would be best able to determine why some sufferers seem to manifest skin problems, allergies and chemical sensitivities, digestive problems, etc. It is through this 'link process' that we would be better able to determine what constitutes the various types of body odor, better identifying exactly what enzymes (as well as possibly other factors) are involved, and see what other secondary illnesses or conditions may be associated with the various pathways mutations. Somewhere in that link between the genetics and blood composition may lie the answer.

In order to carry out this research, we would just need a scientist who is interested in developing this type of very highly sensitive instrument, a geneticist who is interested in this field, and a benefactor who would be interested in supporting this effort for compassionate and lucrative reasons.


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