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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov
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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

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Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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THE BOY WHO
SMELLS LIKE FISH

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TREADING WATER
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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Thursday, August 3, 2017

Systemic Body Odor sufferers needed for pilot study

Click on icon
for Pilot Study information


Fecal Body Odor, TMAU, Bromhidrosis sufferers
Candida odor, and other Systemic odor condition sufferers
are needed for pilot study doing DNA sequencing.

Is any sufferer interested in participating in a pilot study that involved DNA sequencing?

For more details about this pilot study, please see the PowerPoint Presentation above that Danny has done for us explaining the program. If you have any questions or wish to participate in this pilot study, please direct your questions to Danny at,

The following is an invitation message from Danny Kunz, who did the PowerPoint Presentation,
"Metabolic Pathway Simulation: Apocrine Bromhidrosis compared to TMAU" for the MEBO 2017 Annual Meetup.

There are people needed to get their DNA sequenced for a pilot study? This is being done by the same person who's fecal body odor presentation you [MEBO] posted not too long ago. I've attached the info regarding that under the exome sequencing pdf. Also attached a food list for fecal body odor sufferers.

We calculated some general food lists, which spans the fecal body odor patients and Bromhidrosis patients.

Levels:HIGH of Tryptophan, Tyrosine, Phenylalanine, Histidine, Alcohol, Acetic acid and sugar levels

Levels:LOW of Tryptophan, Tyrosine, Phenylalanine, Histidine, Alcohol, Acetic acid and sugar levels

Levels:VERY_HIGH of Tryptophan, Tyrosine, Phenylalanine, Histidine, Alcohol, Acetic acid and sugar levels

Levels:VERY_LOW of Tryptophan, Tyrosine, Phenylalanine, Histidine, Alcohol, Acetic acid and sugar levels


It's really great that Danny has thought of and reached out to our community for this pilot study. On behalf of our international community, we thank you very much, Danny.

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
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A EURORDIS and NORD Member Organization

posted by Maria de la Torre on 8/03/2017
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