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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

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, October 9, 2013

Comment about the recent TMAU paper involving Professors Phillips and Shephard

We posted in the blog recently about a new research paper on trimethylaminuria in which Professors' Elizabeth Shephard and Ian Phillips were involved. They have kindly given us permission to post a quote about the paper.

The abstract of the paper can be read on pubmed : Relationships between flavin-containing monooxygenase 3 (FMO3) genotype and trimethylaminuria phenotype in a Japanese population

link : Pubmed TMAU paper abstract


Below is the quote given by Professors' Elizabeth Shephard and Ian Phillips about the paper 

Prof Phillips and Shephard : involved with this TMAU paper
1. Of the 13 individuals diagnosed as severe TMAurics are homozygous or compound heterozygous for mutations that severely affect FMO3 function. Given this preponderance of severe mutations, It is likely that the other 3 have unidentified mutations (in promoter or introns) that have a severe affect on expression or processing of FMO3.

2. Most of the TMAurics are classified (on the basis of urinary excretion) as moderate or mild TMAurics. Of these, none is homozygous or compound heterozygous for mutations that severely affect FMO3 activity. This suggests that it is unlikely that these phenotypes are a consequence of unidentified mutations that severely affect expression or activity of FMO3. However, it is possible that some of these individuals have unknown mutations that have moderate effects on expression of the gene or processing of the RNA.

3. Genotype-phenotype correlation: individuals homozygous or compound heterozygous for mutations that have a severe affect on FMO3 activity will suffer from severe TMAU. Therefore, severe TMAU can be diagnosed genetically. However, most TMAurics suffer from moderate or mild forms of the disorder; these cannot be diagnosed genetically and, thus, must be due to factors other than FMO3 genotype. It is likely that exon sequencing would identify only those affected by severe TMAU and, thus, would not be informative for the majority of TMAU sufferers.

4. For the group there is a strong correlation between total urinary TMA (TMA + TMA N-oxide) and the amount excreted as the free amine (TMA), which implies that individuals with moderate or mild TMAU would benefit from a reduction of total TMA load. 


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