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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

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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

Sunday, July 15, 2012

Activism: a change in values, thinking and perception


In order for an activist campaign such as our community’s Raising Awareness Campaign, to come together and to be successful, we first need to fully understand what it entails and why we should undertake such a task. Throughout the years, for centuries, sufferers have had to endure this condition in shame and isolation, with no hope of finding a solution.

It requires a solid foundation of an internationally organized community comprised of sufferers turned activists!
The primary focus of MEBO’s Raising Awareness Campaign is to promote and direct changes in the medical and scientific institution throughout the world. This Campaign calls for these institutions to learn how to actively listen to sufferers when presenting their symptoms, to then have the wherewithal at their disposal to prescribe the appropriate diagnostic tests in order to arrive at a proper treatment plan and a cure. It is also geared towards raising awareness in the public and political arena in order to obtain large research grants to support the scientific and medical fields in providing the proper medical care.


This change in values, thinking and perceptions leads to a deepened sense of purpose and a richer network of support to draw from,
and the individual transforms from a victim position to an activist position –
bringing about change.
It requires that all sufferers around the world realize that a deeper personal change in values, thinking and perception about having this condition is fundamental. Each one individually has to stop and take a good look at himself or herself and ask if the approach one has been taking is productive or destructive – TO BELIEVE THAT ONE REMAINS NEUTRAL IS DELUSIONAL!. Either we change centuries of sufferers’ attitudes of shame and reclusive behavior and become part of the solution, or we promulgate the status quo by taking no action; the latter has proven to be very destructive throughout history.


The turning point involves a broadening of personal identity and a shift toward feeling more deeply connect with, and part of, life itself. We begin to feel alive by, instead of nurturing self-defeatism, developing a personal identity with being a member of an international community that is on a mission to “fix this problem” and to make life right for ourselves and our offspring.

It can also be viewed as a spiritual process, as many call it after attending a meetup. This change in values, thinking and perceptions leads to a deepened sense of purpose and a richer network of support to draw from, and the individual transforms from a victim position to an activist position – bringing about change. We can persist with this campaign in the most peaceful yet proactive manner, until we are finally taken seriously.

The following poem, by Joanna Macy, edited into verse by Tom Atlee, expresses the grace received when saying "yes" to being a part of the solution.

When you act on behalf
of something greater than yourself,
you begin
to feel it acting through you
with a power that is greater than your own.

This is grace.

Today, as we take risks
for the sake of something greater
than our separate, individual lives,
we are feeling graced
by other beings and by Earth itself.

Those with whom and on whose behalf we act
give us strength
and eloquence
and staying power
we didn't know we had.

We just need to practice knowing that
and remembering that we are sustained
by each other
in the web of life.
Our true power comes as a gift, like grace,
because in truth it is sustained by others.

If we practice drawing on the wisdom
and beauty
and strengths
of our fellow humans
and our fellow species
we can go into any situation
and trust
that the courage and intelligence required
will be supplied.

Poem taken from website at
PLEASE BE PREPARED TO JOIN OUR COMMUNITY'S EMAIL CAMPAIGN ON JULY 19TH, organized by Karen James aimed at the Medical Research Council (MRC) in protest of their rejection of the much needed research grant our experts put together in the UK (See sample of email below). Thanks to all who participate.


María de la Torre
Founder and Executive Director

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