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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

Monday, March 2, 2015

Research funded by NORD Fund to be published this year

A previous rareconnect webinar with Monell
Research funded by NORD Fund to be published this year
The funding was raised by the community
Funding was around $30K
Grant was won by The Monell Chemical Senses Center

Regular readers will recall that the community raised over $30K to activate the NORD Grant into trimethylaminuria (TMAU). A particular campaign by some community members using the temporary webite RRR (researching for research resources) was behind most of the money raised.

The grant was won by the Monell Chemical Senses Center in 2011 (one of 6 bids) and research was completed in 2014. We understand that the research paper has been completed and put forward for publishing in a medical journal. However this could take a while and so we cannot say when it will be published other than being hopeful it will be anytime in 2015.

Well done to the community for making this research happen.

funding target is reached (Feb 2011)
Nord Grant awarded to Monell (2012)


Anonymous said...

Is this the same research as the UK Trinzyme research?

Jul 3, 2015, 7:57:00 AM
blogcontributor2 said...

No it was a small 'budget' study done by Monell and funded by the community via NORD.

I think it will mainly be a small 'statistics' study to add some more 'statistical observation' about TMAU (via test results). I don't think it was reearch for a cure or therapy of any kind.

Jul 3, 2015, 8:05:00 AM
Anonymous said...

Wasn't it to be a study on the TMAU genome that would hopefully make research for a cure easier to accomplish in the future?

Jul 7, 2015, 4:41:00 PM
Anonymous said...

I assumed from the below that it will help the sufferers.

'Monnell aims to study the genes behind the disorder TMAU – work scientists believe could lead to new developments in helping control the symptoms of Trimethylaminuria, also known as TMAU.'

Jul 9, 2015, 5:58:00 PM
blogcontributor2 said...

We got a reply from them about the current situation. It seems it wasn't accepted by the first genetic journal for publishment and they are now trying to get accepted by another journal. This seems to be a typical pattern with studies trying to get published (perhaps moreso small-scale studies)

I wouldnt expect too much form the study as it was a very 'small' study in relative terms. I'm sure it is of some use to understanding TMAU.

Jul 9, 2015, 6:08:00 PM
Henry said...

Why is there so much interest in the genetics side of TMAU as opposed to Gut flora.

I saw a video of a woman who said her child didn't have symptoms until she started weening the baby. Is there any research into milk. If the necessary enzymes and bacteria are present in human milk then may they are also present in unpasturised cows milk.

Jul 31, 2015, 6:50:00 AM
Anonymous said...

Any update on this?

Apr 18, 2016, 8:55:00 PM
blogcontributor2 said...

It's a complex story. Usually research papers are published via peer journals. The impression is it wasn't accepted by the first 2 journals but now it being put to another journal. For this new journal an impression is the chances are hopeful it will be published in this one.

Apr 19, 2016, 7:39:00 AM
Anonymous said...

I hope so. Please do let us know if and when they do.

Apr 20, 2016, 7:38:00 PM
Anonymous said...

Any news on this?

Sep 4, 2016, 9:19:00 PM
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