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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

Full details :
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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

MEBO Private Facebook Group
to join : go to
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Join/Watch the weekly
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, October 20, 2008

Sheri's story : making sense of it

Note: Permission is always asked for posts in this category.

This is a post by Sheri on MSN body odor suport group forum that encapsulates her story.

...For me, it has been FBO since preteen yrs and I am 41 now! For yrs, I thought it was a female a recurrent infection or something. I have even been asked several times if I have had an AIDS test! (which I had after being asked this repeatedly...results were neg, thank God) when I asked why I was being asked that question each time I went to my gyno regarding this problem, I was always told that AIDS patients frequently suffer many vaginal right after another. BUt in my case, tests always came back neg. for infections. Then they would just say either they couldnt smell anything or that I should consider counceling. It was a nightmare that got me nowhere.

But then in '06, I had to have a hysterectomy. I thought my troubles were solved!!! Long story short, I was 39 yrs old before I found out the smell wasnt in just one localized area. Then the realization hit that the odor was coming from my ENTIRE body. UHHG! I was devastated.

But the light at the end of the tunnel is that there IS a viable way of significantly reducing the odor.....DIET!! DIET!! DIET!!

For me it is mainly dairies, red meats, any kind of processed food especially, is the worst. I know beyond a shadow of a doubt that if I consume these foods, I will be out of commission for a few days....and then it is on me.

What I am trying to say is, I wonder how many odor sufferers are under the thinking that is only localized odor that they are dealing with when in fact, it may be whole body odor?


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