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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

Tuesday, May 14, 2013

Responses MEBO informal Survey: Odor Conditions

Please participate in Survey below
Click on icon below for updated stats results.



Thanks to all who participated in this informal survey. It is intended to show Odegon what the needs of our community are, and as expected, it is very diverse. Some of us tend to forget that the vast majority of sufferers test negative for TMAU, and MEBO is committed to pursue answers to this undiagnosed group of sufferers. As Steve Rawlings, Director of Odegon tells me, this product will works well on some conditions and not as well on others. For example, it will do nothing for halitosis, unless using the product in a mask; and it may not make much of a difference if used under the arm when odor is emitted from the scalp, breath, chest, groin, etc. Each area would have to have the proper protection in order to control the odorous chemicals in that area, whenever possible, and it's not always possible.

Approximately 1/3 of the 30 participants of this survey said they suffer from Bromhidrosis, Hyperhidrosis and "Other", approximately 1/3 suffer from trimethylaminuria alone, and approximately 1/3 from a combination of TMAU and Halitosis. Only one person suffers solely from Halitosis, possibly because since the Odegon technology would not be helpful in controlling breath halitosis symptoms, other halitosis sufferers didn't participate in the survey.

An interesting note is how most sufferers of TMAU seem to have odor throughout the body, though some noted groin, axillae, or feet only. Perhaps as a TMAU sufferer manages to reduce odor with the TMAU odor-management protocol, only certain specific areas remain with some degree of odor. In this case, if it is the groin, underarm, feet, collar area, chest or back area that remain odorous, the Odegon patches or garments may help. They are hand or machine washable, and dry cleanable as well. In more extreme cases, perhaps one would need to change clothes in the middle of a workday or school day to another garment with the patch. It may work for some, but not for others, and only each sufferer can determine his or her own needs, which may not apply to other sufferers.

One thing I've learned from my years of working with this international community is that the causes and manifestations of our conditions vary from sufferer to sufferer, and in fact, vary from time to time in each sufferer. Therefore, each sufferer needs to pursue understanding through testing and becoming involved in research personally, or supporting research financially. All need to strive to become informed and knowledgeable to better determine what may work or not work for himself or herself. Each must become sophisticated in the decision making process to determine when and what special occasions requiring special measures.


María de la Torre
Founder and Executive Director

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