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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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Blog Archive

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, October 21, 2008

Women's Conference call this Wednesday - time change

As we agreed upon in the last Women's Conference Call, the time of our future calls has been changed from 8:00p.m./EST to 9:00p.m. because many ladies are unable to attend so early in the Central and Pacific time zones. This upcoming call on Wednesday, October 22nd, is going to be an open discussion forum. So please, bring forth any concerns you may have.

A number of ladies have started the odor-reducing management protocol recommended by the National Institute of Health, which I posted in this blog, An odor-reducing management protocol discussed in the Thames Festival meet-up, and a few of you have been emailing me asking many questions about this process. Others have called me on the phone to discuss it further. As a result, I was able to explain the various sources of odor that Arun had explained to us in the meet-up, and how this protocol addresses these sources. This discussion has helped some of the ladies make sense of the need to follow this protocol correctly in order for it to be effective, as it has helped my son and other sufferers as well control their odor and are currently odor-free most of the time.

This and any other topic of discussion could be addressed in this women's conference call, and all ladies are invited to participate. To each of the new members that have never called in before, keep in mind that you can call in and introduce yourself to tell us a little about yourself, or you can just call in to listen without speaking until you feel more comfortable speaking later on. The instructions on how to call is found in the center sidebar of this blog under 'MSN groups Body Odor forum : FREE (long distance call plan) Phone Conferences'. Yes, it is a Free Conference line if calling from the US, and if you have a free long distance plan.

I hope you can all make it to this call. It will be a very good opportunity to discuss odor management techniques. I always look forward to these calls very much. Talk to you then.



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