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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

Monday, August 12, 2013

Survey - Message from the TMAU.ORG.UK Management

TMAU.ORG.UK has been serving the TMAU community since 2009 with their website and forum, which includes inspirational stories, interviews with experts, press releases/interviews, videos, and general TMAU tips.

As a member of this group, I have received an email from The TMAU Forum Management notifying us of a survey sufferers who have tested positive for TMAU are invited to participate in. I have copied and pasted below the information The Management has sent me with the links exactly as they noted. All persons with TMAU are encouraged to assist in this survey.

Hi All,

Please see the below email from Min Li, MD, PhD
St.Paul's Hospital,Vancouver,B.C.

I would be grateful if all members could take a minute and respond directly
to either: or Dr. Ramesh Saeedi's

Dear TMAU website members,

We have previously described a patient with trimethylaminuria (TMAU) who
also has very high cholesterol level due to heterozygous familial
hypercholesterolemia (Journal of Canadian Medical Association Journal
2011;183:929-931). A CT angiogram (an x-ray of the heart vessels after
injection of dye in veins) preformed in this 71 year-old patient revealed
no evidence of hardening of arteries in her blood vessels. This was very
surprising in view of the fact that she was not treated (most patients with
this condition develop early heart disease). A recent paper published in
Nature (Nature 2011; 472:57-65) suggested that trimethylamine N oxide (TMO)
plays an important role in the development of heart and blood vessels
disease. Based on these observations, we think that individuals with TMAU
may be protected against heart disease because of decreased production of
TMO in this condition.

To test this idea, we need more information. Specifically, we would like to
get information regarding the frequency and severity of heart disease in
patients with TMAU. Could you kindly supply the following information?

• Have you ever been diagnosed with heart disease? If yes, at what age?
• Have your family members been diagnosed with heart disease? If yes, at
what age?
• Have you ever been diagnosed with high blood pressure, and diabetes
(elevated blood sugar)?
• Have you ever smoked?

This information is important for us to understand the role of TMO in the
development of heart and blood vessel disease. All the information gathered
will be confidential. No names will be published. Thank you for your help.


Jiri Frohlich, MD, FRCPC
Min Li, MD, PhD
Ramesh Saeedi, MD, PhD

Healthy Heart Program, St. Paul's Hospital, Vancouver, BC, Canada
Department of Pathology and Laboratory Medicine, the University of British
Columbia, Vancouver, BC, Canada

Thanks, The Management


María de la Torre
Founder and Executive Director

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