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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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
or contact
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

Saturday, September 13, 2008

Day 1 at the London meetup. Day 2 is Sunday 12 noon

Today was the first day of our Thames Festival Meet-up, the first one I've ever attended. There were a total of 8 people today, and the rest are coming tomorrow. Of the 8 people, only 2 had attended the previous meet-ups and it was the first one for the other 6 people. Of the 8 people, already 2 have been diagnosed with TMAU.

The most beautiful part of this meet is how quickly we bypassed the common initial encounter protocol and immediately bonded as if so much unspoken communication had already taken place. We quickly transcended to a closeness that allowed us to feel peaceful and relaxed as if we had been experiencing our "battles" together, and now share a deep solidarity in our quest for healing.

Again, each and every one of us let out a sigh of relief knowing that not one of us smelled any of the others! Could it be that our happy, peaceful state somehow decreased our odor just as stress increases odor? Maybe much more could be said for emotional triggers in addition to hormonal and dietary triggers. If fact, we did not get even negative reactions from the thousands of people in the festival. Just this fact alone made our experience so very special and only added to the spiritual healing we all experienced in these few hours. We couldn't help but think of all the other sufferers not present, and wished the same comfort we found here to each and every one of them.


Anonymous said...

Don't you think that it's strange nobody smelled anyone? It's starting to make me think that maybe your mental state can really trigger odor.

May 19, 2012, 5:37:00 PM
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