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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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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
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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

Tuesday, June 11, 2013

Which odors are your concerns ?

On May 31, 2013, "Anonymous" said the following Comment in the post, Digestive System and Body Odor /Halitosis,

I know Maria has done questionaires would really help me right now to know if anyone else with or without tmau has fish odor, and if so how often compared to other odors......

There has been an ongoing poll in the MEBO Blog for a long time, and perhaps because it is located in the center of the center bar of this blog, it is not easy to find. Therefore, I have put it in this post, and urge anyone who has not voted, to please do so now.

Almost 500 sufferers have participated, and in total, 7 odor types have been described, plus "others" were declared. This seems to indicate that perhaps the type of odor varies in each individual from time to time, or that each person detecting the odor perceives it or identifies it differently.

Body Odor : Which odors are your concerns ? (1 or more)

Thank you for the strong participation in this post.

María de la Torre
Founder and Executive Director

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Anonymous said...

Boost diet update...I'm curious of the 29% of people stating they have a fish odor, how many tested positive for any form of tmau, how many tested negative for tmau and how many have never been tested for tmau????????? Does anyone who tested negative for tmau have a fish odor??????? If anyone tested negative for tmau but has fish odor it would help me if, without sharing personal information, you reply to this post to let me know. Thanx everyone for your help......

Jun 11, 2013, 9:28:00 AM
Maria de la Torre said...

I will write a Survey as soon as I can within the next few days, with your questions, Anonymous/Boost diet. From what I've read and discussions we've had in conferences and meetups, there is a trend for sufferers who test positive for both Primary and Secondary TMAU to NOT smell mostly fishy, but instead, mostly fecal, garbage and sewage.

I see that your interest isn't about what TMAU+ people smell of, but rather, an analysis more focused on persons who do smell of fish though they still test negative for TMAU (even not borderline negative). Let's explore these questions with a survey.

FYI, this poll is not a scientific accurate study, though it does seem to paint a consistent picture of our "community snapshot." This poll is almost 5 years old, and from time to time, it has been buggy in that it would count backwards instead of forwards throughout the 5 years. I believe that the count of participants should be twice as much, if not more, to be more accurate, but the trend of fecal odor coming out ahead in the count has been constant, and the ratio among odors has been more or less consistent as well.

Jun 14, 2013, 12:41:00 AM
Anonymous said...

Thank you...I'm curious of all suffers with and without odor is described by everyone as a fishy odor the majority of the time.........but all medical tests for obvious conditions are negative.......I do less often have a burning wood odor or fecal odor and sulfur odor.............its "supposed" to be the other way around people with tmau have fish odors.........strangers, familiar people, my doctors, a toddler in the store the other day who babbled fish, everyone says the same.......I'm curious if anyone withcand without tmau does too........but most intersting who without tmau does have a fish odor..........thank you for your help.......

Jun 15, 2013, 7:47:00 AM
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