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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, April 24, 2018

Danny Kunz: Secondary TMAU, TMA, & fish smell

The research in the last decade assumed a kind of wrong type of bacteria in the gut, which would produce large amounts of TMA just by introducing them into the intestinal tract. This assumption seems to be incorrect.
Since TMAU was discovered in the 1990s, it was assumed that there was a bacterial overgrowth in the gut that produced excess amount of the odorous chemical compound, trimethylamine (TMA), and thus, overwhelmed a deficient FMO3 metabolic enzyme in the case of Primary TMAU, or even overwhelmed a well-functioning FMO3 metabolic enzyme, in the case of Secondary TMAU. It was well understood by these scientists that this was only an assumption, since research funding had not been provided to identify which bacteria inhabited the human gut that would produce excess TMA. For this reason, a course of antibiotic treatment is recommended in the well-referenced TMAU odor-management protocol.

Historically, all research investment into TMA producing bacteria had been made in the fishing industry to determine the freshness of the fish, since it's more lucrative than investing in human research whose lives are devastated with TMAU.
In 2017, as a result of the gut microbiome studies the MEBO community has donated to both Danny Kunz and his Citizen Research Group in Germany and MEBO's Scientific Director, Irene Gabashvili, PhD., the data collected suggests that the elevated levels of TMA is not due to a bacterial overgrowth.  Irene's perspective will be posted at a later date in this blog.

Danny Kunz's observations suggest, "It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity."


Trimethylamine (TMA) and the smell of fish
April 11, 2017

It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity.
The typical smell of (dead) fish is based on a chemical compound called trimethylamine (TMA)...

The second type [of TMAU] is different. Patients with the type 2 pattern show an overload of the FMO3 enzyme caused by a largely increased TMA synthesis in the small intestinal tract.

The research in the last decade assumed a kind of wrong type of bacteria in the gut, which would produce large amounts of TMA just by introducing them into the intestinal tract.

This assumption seems to be incorrect.

Today’s view shifts currently. It is very likely that a permanent malabsorption of choline and betaine is the cause of the altered bacterial metabolism activity.
More interestingly most of the TMAU sufferers do have other dominant smell types than fishy. The most stated type of smell was a fecal smell.

In March 2009, MEBO interviewed Nigel Manning, Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital, explained to us that more research had been carried out and papers published on trimethylamine (chemical with dead fish odor) and 'fish-spoiling' than on TMA in humans. Historically, all research investment into TMA producing bacteria had been made in the fishing industry to determine the freshness of the fish, since it's more lucrative than investing in human research whose lives are devastated with TMAU. When asked what bacteria is responsible for the production of trimethylamine in the gut, he replies,

Do we know what bacteria is responsible for gut Trimethylamine (TMA) production ?

NM: There are more than 400 species of bacteria in the colon but only a few described as TMA-producing. The fishing industry’s research microbiologists have published many papers on TMA and ‘fish-spoiling’ and cite species such as Vibrio harveyi, Vibrio fischeri, Photobacterium leiognathi and Shewanella baltica. The last of these is also know to generate hydrogen sulphide – or ‘ rotten egg’ gas. Whether these microbes are those responsible for human TMA production is a good question, but they may represent a small portion of the total.

For a description of these microorganisms, see a post in this blog, "Shewanella baltica and other TMA producing bacteria in the gut".


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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