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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

Thursday, March 26, 2009

Research ideas for MeBO Research and the group

MeBO Research will be focusing on encouraging research into metabolic body odors and halitosis. Probably moreso 'fecal body odor' syndrome, since this seems by far the most common ... and possibly if that is solved then many more will be too. Naturally it will include TMAU, since this is the only generally recognised metabolic body odor. Dimethylglycinuria has one medical paper with such a diagnosis, and some TMAU testers do test for this too, but does not seem to have gathered 'momentum' as a diagnosis. Perhaps the DMGU paper was more useful for proving that if they look for smelly molecules with an open-mind rather than only trimethylamine, they might find other odorous volatile organic compounds.

The purpose of this post is to get people thinking about ideas for research. It's important that everything is transparent so that it may help others come up with their own ideas or instigate their own inquiries. The aim is to get us all smell-free as soon as possible, wherever the 'cure' comes from.

A few ideas MeBO will be asking around about initially are :

TMA-testing paper for home monitoring of trimethylamine:
The same as current urine test papers for ph/diabetes etc. This technology seems to already exist, but nobody is marketing it. For those who feel trimethylamine is their only source of odor, it would seem possibly helpful in monitoring the level of TMA at home.

FMO3-enriched probiotic:
Although FMO3 seems to be mostly situated in the liver, the trimethylamine is only produced in the gut. So you would think it may be possible to genetically engineer a gut bacteria to be rich in FMO3 enzyme and detoxify the TMA on site in the gut. This concept seems to be already available, and studies have been done using engineered-probiotics especially for hiv (click here) and crohns disease (and possibly others). Inquiries will be made about this. Again, quite possibly the only reason it isn't already done is because of lack of interest in the medical system and government regarding TMAU. Since FMO3 deals with a lot of smelly substrates (sulfides, amines and phosphorus compounds), you would think this idea may cover a lot of common smells sourced from the gut like fecal body odor. There has even been speculation a bacteria could be used to allow FMO-bacteria to circulate systemically. The concept has been mentioned in TMAU literature for a while.

As to the future, one may envisage some new approach to treating or managing the condition quite apart form the obvious one of gene therapy with replacement of the human gene for FMO3. Alternative approaches might embrace the following: use of gut absorbents, such as charcoal or ion-exchange resins; modify the gut flora to reduce the bacterial species responsible for the conversion of precursors to trimethylamine; incorporate micro-organisms "engineered" with human FMO3 into the gut flora, to oxidize any trimethylamine released to its non-odorous N-oxide; provide riboflavin supplements, a precursor of the FAD cofactor for flavin monooxygenase function, in an attempt to maximize any residual activity; and finally, from the cosmetic point of view, the development of "malodor suppressants" in hygiene products to disguise the offensive smell of trimethylamine.
Mitchell/Smith TMAU paper 2003
Speculative tests for profiling:
The only test on offer to smelly people is the TMAU test and perhaps the DMGU test. One should probably regard the medical system and governments as not interested in metabolic odor problems and perhaps we are in a situation where we should be trying to get a 'test profile' of the problem ourselves. For instance, very often sufferers suggest they have gut-type issues (especially in fecal body odor). It's probably a mistake to wait for the system to come up with answers for us. Although this option would be trial and error, some specificity 'guesstimates' could be made in deciding what areas to start testing, and who knows what the end results would be. There's a good chance fecal body odor is often a 'syndrome' with a few factors,judging by how a size-able % of sufferers seem to develop the problem well over 30. In a perfect world a government-initiated body odor and halitosis research center would be doing this type of research, as they did with a smell and taste clinic and other disorders. We need real data.

Other ideas:
Petition politicians

These are only some opening ideas that MeBO Research may be following, but since the 'goal' is for all of us to be smell-free, these ideas are by no means 'copyrighted' and more ideas are welcome.


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