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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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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, December 4, 2008 April 2007 article about Dr Preti and the Monell Chemical Senses Center

This is an article about the Monell Chemical Senses Center and Dr Preti from the Philadelphia Inquirer from April 2007. A Philadelphia chemist helps desperate people who smell like old fish or even marijuana smoke

In a sense, apart from the genetic research side of FMO3, it's the history of trimethylaminuria research, diagnosis and treatment in the USA, since this has been where the 'homeless' sufferers naturally turned up for help over the last few decades, despite Dr Preti being an organic chemist rather than a medical doctor. The article says he discovered the main compound that causes underarm odor, which may be what originally attracted sufferers; and in a twist of fate, Dr Fennessey was a fellow graduate friend of Dr Preti and had diagnosed a TMAU case, which seems to have been the birth of how most sufferers today in the USA get tested (either via Dr Preti, or direct from Dr Fennessey's Denver lab, which is likely a pediatric metabolism unit). Very few options (none ?) apart from that have been available for metabolic odor sufferers. Possibly the question is for sufferers, have we achieved as much as we could have with regards the issue ?

With the coming of the internet, the medical system-sufferer relationship can be almost reversed. The sufferers can be in charge of the destiny of research into their problem (for instance, by raising and spending funds in an efficient and effective manner). For some reason this potential power hasn't seemed to have been tapped in most (any?) conditions/syndromes, judging from how sufferers and webmasters currently interact in any chosen 'health problem'. Robert Brown is showing what can be done, as he constructs The Australian Trimethylaminuria Foundation website, and already has a benefactor who is going to help with medical research.

Within the system itself, regarding the old-fashioned way the system approaches health problems, the NIH set up a taste and smell clinic for whatever reason in 1969. Now sufferers can hopefully more easily lobby the system to set up a research and clinic for body odor and halitosis, especially metabolic, or play a role in setting one up outside the system (or both). With the internet, the power has shifted and the possibilities are limitless

Note: going to the Monell center can mean an 18 month wait and it's unclear how those who have attended feel about the need for the visit. If you want to do the TMAU urine test direct, The Arkansas lab is probably the best option. See this post about the Arkansas lab trimethylaminuria urine test. You can do the FMO3 DNA test for $400 from HBRI in San Diego.

Interesting quotes from the article:

Preti, 62, feigns annoyance with the hundreds of calls that came in last year after he discussed the disease on network television. He claims that if he could get a medical doctor to take over his "practice," he gladly would.
After landing a job at the Monell Center in 1971, his pursuit of chemistry took an earthier direction: bodily secretions. He won acclaim for studying pheromones and went on to discover the key chemical in human underarm odor.

In the late 1980s, a New York clinic referred a patient who complained of an occasional fishy taste in her mouth. Preti recalled that Fennessey, whom he knew from grad school, had run across a similar case and had determined that his patient had trouble metabolizing trimethylamine. They spoke, and a collaboration was born.

The patients come to Philadelphia for three hours of consultation and tests. Their urine samples go to Colorado, where Fennessey's lab has developed a way to screen for the condition. Preti remains the only specialist in the United States who sees such patients, says [the Founder of the Trimethylaminuria Foundation], who saw Preti and later helped create the Trimethylaminuria Foundation.
Preti's lab also is working on a way to test for the condition in saliva.


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