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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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TMAU UK end total:262
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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


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MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Thursday, December 4, 2008

Philly.com 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.

Philly.com: 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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