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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

Monday, February 9, 2009

Our Conference Call Yesterday

I would like to thank all those who participated in our conference call yesterday. It was very nice to hear old familiar voices and two new ones that I had not heard before.

As in all conference calls, we discussed remedies and diets, and as usual, we could clearly see how not everyone responds the same to each diet and remedy. In this exchange of ideas, we all got a better picture of the complexities of our condition and the best ways to treat them. Everyone is invited to join these conference calls on a regular basis to listen to these very interesting discussions.

there have been no programs in the US or UK that even remotely come close to funding research into metabolic body odor or systemic halitosis in the past few yearsWe talked at length about our new forum designed by Arun and created by Matt and Kristen. They have done such a great job, and we thoroughly enjoy the privacy of having our own site that we can call home. We did point out how important it is not only to post new threads in the forum but also to reply to posters, especially when they are pouring their hearts out.

The economic changes around the world have threatened the livelihood of many people, but in the case of a body odor sufferer, the threat is even greater, since frequently, this condition places sufferers on top of the layoff list. We discussed how many members of this community tend to suffer from depression as a result of this and other situations in life, especially now after the holidays. As we customarily do in our community, we tried to lift each other up during the call in an effort to support each other.

As pointed out in the call, our anthology project to raise social awareness of BO conditions served as the first phase of our emotional healing in which we poured our hearts out about our depression and anxiety caused by living with a BO condition. Now that the anthology is finished, all are encouraged to continue writing poems, essays, and short stories in our forum to continue with the healing process.

We discussed at length our new non-profit organization, MEBO Research, which I registered in the UK only two days ago. The company goals were mentioned, but the obstacles we face as a community united under this banner was emphasized.

As Arun had pointed out in previous conference calls and meet-ups, there have been no programs in the US or UK that even remotely come close to funding research into metabolic body odor or systemic halitosis in the past few years. It appears that the authorities in these countries just don’t think that breath malodor or body odor is a sufficiently important problem to justify the investment of government research dollars.

Basically, the problem is that research funding comes from governments, and governments are, by definition, political. At the present time, Research & Development funds gets channeled to popular “high profile” diseases like cancers and diabetes, for example. In order to get some funding for metabolic body odor and systemic halitosis, we as a community need to continue to strive to promote social awareness and to make our presence known to our respective politicians.

We would also be wise to try to upgrade MEBO from a limited by guarantee company to a registered charity, which would cost approximately £1,500/$2,200, because by doing so, all donations would be tax deductible by the donor. This would then enable us to pursue research funding from private foundations.

Many more topics were discussed in this conference call. We hope you join us in the next General Conference Call to be held on Sunday, February 22nd at 2:00p.m./EST.


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