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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

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BO Sufferers Podcasts

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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
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
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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, July 17, 2012

What's all the fuss about studying gut microflora?

We've been hearing alot about our UK experts attempting to research intestinal bacteria on patients with foul-oour-producing metabolic disorders, and how the Medical Research Council turned down a grant that would fund this research. Let's take a look at some of the fundamentals of our gut ecosystems and discuss them in layman's terms.


Which of the three gut types are you?


An article found in earthsky.org entitled, "Which of the three gut types are you?" breaks down the human microbial gut population into three enterotypes, Bacteriodes, Prevotella, and Ruminococcus. In fact, researchers have classified people into categories of bacterial ecosystems. Do we know in which of the three ecosystems persons with body and/or breath malodor fall? Could being in any of these three categories increase our chances of having greater or lesser body/breath odor when eating a well-balanced healthy meal, and if so, which organism is responsible for which odorous chemical?

The Bacteroides ecosystem consists largely of bacteria that get energy by fermenting sugars and proteins. The Prevotella ecosystem contains a lot of microbes that like to dine on proteins in the mucusy lining of the gut. Ruminococcus...the most common...dine on those gut mucus proteins, but they also enjoy simple sugar treats...

Therefore, if these different ecosystems feed on proteins, for example, then the fact that a sufferer may have good results with a low choline diet does not necessarily mean that she or he has TMAU, genetic or acquired, because the diet is also low in protein in addition to low in choline; and thus the low choline diet may have deprived non-TMA producing bacteria of the protein it needs to produce other compounds.

On the other hand, one may have high levels of TMA with a very good functioning FMO3 enzyme, but instead of having (or in addition to having a genetic cause for high levels of TMA) one may have an overpopulated bacteria that feeds on choline and produces TMA...BUT WHICH BACTERIA IS IT??? We were denied research funding to answer this simple question! Our very diets depend on obtaining an answer to this question, not only for TMA producing bacteria, but also for other microorganisms that produce other odorous compounds that enter our bloodstream from our intestines.

This article explains how our own human DNA consists of only 1% of all the genes we carry around with us, and the other DNA belongs to the 100,000 billion microbes that hang out in our gut, skin, mucous membranes, body fluids, and researchers are focusing attention to the trillions of microbes that live off the food we offer them.

Researchers in an international consortium including Jeroen Raes of the Flanders Institute of Biology in Brussels, Belgium, have used human poop samples to classify people into three categories of enterotypes, or bacterial ecosystems.


VIB, a life sciences research Institute in Flanders, Belgium, features interesting articles along these lines, such as,
'People fall into three categories of gut microbiota, metagenomics study shows' and
'Toward an alternative for antibiotics to fight bacterial infections?'





Since we as a community appreciate the importance of further research into microflora as a means towards controlling body odor and halitosis, let us participate in the email campaign that will take place in only 2 days, on the 19th of July, by writing to the following list of key persons in the Medical Research Council (MRC) in protest of their denial of research funding to our UK experts, and to encourage them to support this endeavor. Please send the following email to the following list of email addresses - please send a separate email to each person, as opposed to addressing it to a group to avoid it going to their spam folder. Feel free to add, omit, or modify the wording of this email, which is intended to be used as a tool to help you formulate your own ideas, or you can copy it verbatim.


I was extremely disappointed to learn that the grant application for research into the intestinal bacteria of TMAU (Trimethylaminuria) patients and patients with foul-odour-producing metabolic disorders was turned down by the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into potential cures and treatments for the condition of Trimethylaminuria as a matter of urgency.

Former campaigns had greater effect when several e-mails and letters were received simultaneously. Our community would be very grateful if you could support us in this venture,


With kindest regards,
[YOUR NAME]


linda.willmott@headoffice.mrc.ac.uk
corporate@headoffice.mrc.ac.uk
felicia.rodriguez@headoffice.mrc.ac.uk
GPSD@headoffice.mrc.ac.uk

GrantsPostAward@ssc.rcuk.ac.uk
grants@headoffice.mrc.ac.uk
GrantsMRC@ssc.rcuk.ac.uk
Claire.Wyllie@headoffice.mrc.ac.uk
Rebecca.Hodges@headoffice.mrc.ac.uk
grants@headoffice.mrc.ac.uk
amt@headoffice.mrc.ac.uk




THANKS TO ALL WHO PARTICIPATE
from around the world!

María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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