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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

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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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

Friday, October 17, 2008

Research into a breath test for testing for Volatile Organic Compounds associated with serious illnesses.

Scientists in Swansea UK are working on a breath test that detects Volatile Organic compounds (VOCs) associated with certain serious illnessess. This is a similar line of testing that Dr Preti of the Monell Chemical Senses Center mentioned at a conference earlier this year

This is likely the kind of test in the future that would be the starting point test for metabolic body odors and halitosis, and local halitosis. Possibly localalized halitosis would make the reading awkward for detecting systemic odors. They are designing it to try and detect serious health complaints but possibly someday when the number of metabolic/bloodborne/systemic odor sufferers is known it could naturally be a part of the diagnostic and monitoring tests.

...The technology analyses the concentrations of particular chemicals and compounds associated with disease in a patient's breath, for example ammonia in relation to hepatitis and acetone in relation to diabetes.

While breath tests are at present less developed than traditional urine or blood tests, they are much less invasive, cheaper and, with improved scientific methods, could offer new potential for the rapid diagnosis and monitoring of illness, increasing the patient's chances of survival.

However, the research is still in the early stages and could take years before it is ready for NHS use...

full article from daily telegraph October 2008


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