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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

Scroll down and select country
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

MEBO TMAU Videos

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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Wednesday, November 12, 2008

email to a list of genetic labs in genetests.org directory






This is an abridged version of an email that has been sent to most of the genetic labs listed on this page on the genetests.org site. The purpose is to raise awareness of metabolic/bloodborne/systemic body odor and halitosis in the medical system, and hopefully get more researchers and labs involved in what is likely the biggest 'unknown' health problem.


Hello,

Have you considered adding the trimethylaminuria urine and DNA tests to your list of tests ? It's estimated that perhaps 1% or more could be genetically 'at risk'. I think you will find there is a great need for these tests.

Possibly, metabolic body odors/halitosis have yet to be properly and extensively defined, but trimethylaminuria is the only 'diagnosis' the 'system' is currently offering, so it makes a starting point. You could be talking 1% or more of the population. It used to be regarded 'autosomal recessive' but they seem to have loosened the criteria. On the body odor/halitosis messageboards, many seem 'metabolic/bloodborne' cases.

Currently in the USA, there is one lab doing FMO3 DNA testing (out of kindness, having been told there's no need to keep testing): The HBRI Institute
HBRI currently receives no funding for its TMAU program other than through donations. The program is quite expensive to maintain but we beleive that this important research should be continued.
and 2 hospital labs do the TMAU urine test (again out of kindness, which might change anytime with new management).

If you ever want to research into metabolic body odor/halitosis and need volunteers, feel free to contact us. You are likely to be overwhelmed by volunteers.

"Mild to transient trimethylaminuria is caused by common variants in the FMO3 gene leading to greatly reduced enzyme activity in vivo. FMO3 deficiency may have clinical relevance well beyond unpleasant body odour."
http://www.ncbi.nlm.nih.gov/pubmed/10485731?dopt=Abstract

"A small but important percentage of oral malodour cases have an extra-oral aetiology and certain of these fall into the category of 'blood-borne halitosis'. Odoriferous substances generated within the body and transported to the lungs via the circulatory system may, if sufficiently volatile, leave with the exhaled air and impart a foetid odour to the breath. The aliphatic tertiary amine, trimethylamine, is such a volatile compound that is generated to excess in patients with a metabolic disorder known as trimethylaminuria (fish-odour syndrome). This article highlights this condition and draws attention to its potential role in the causation of recalcitrant oral malodour."
http://www.ncbi.nlm.nih.gov/pubmed/15752091

"CONCLUSION: Together, these results indicate that abnormal FMO3 capacity is caused by menstruation particularly in the presence, in homozygous form, of mild genetic variants such as [Glu158Lys; Glu308Gly] that cause a reduced FMO3 function."
http://www.ncbi.nlm.nih.gov/pubmed/17257434

"A 1999 NIH sponsored workshop on trimethylaminuria estimated that as much as
one percent of the U.S. population may suffer from a genetic defect in the flavin-
containing monooxygenase 3 gene, FM03. This defect leads to the development of a
fishy body odor because of an accumulation of trimethylamine "
http://www.nal.usda.gov/fnic/foodcomp/Data/Choline/Choline.pdf

"CONCLUSIONS: DMGDH deficiency must be added to the differential diagnosis of patients complaining of a fish odor. This deficiency is the first inborn error of metabolism discovered by use of in vitro 1H NMR spectroscopy of body fluids."
http://www.ncbi.nlm.nih.gov/pubmed/10102904

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