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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)

Tuesday, January 27, 2009

Orphanet and list of potential contacts for trimethylaminuria help



Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact.While it is very difficult to find known testers of metabolic body odors and/or halitosis, the technology is probably readily available worldwide in, for example, hospitals. Detection of the smelly compounds probably being possible using a gas chromatography/mass spectrometry machine or by Proton NMR spectroscopy or similar. These are usually present in metabolism units in hospitals, usually for pediatric units or adult metabolism units. With something like trimethylamine, it's presumably a case of them calibrating the GS/MS to look for that. For those who feel trimethylaminuria doesn't seem a sole answer, they could possibly be tested for any volatile organic compounds rather than just trimethylamine, or just malodorous volatile compounds. Orphanet seems to be a European based website giving information on health problems and possible connections. In their section on TMAU, they have a list of 'clinics' and 'diagnosis centers'. On first glance most don't seem to list trimethylaminuria, (although more do than expected), but they all seem to be metabolism units of some sort and will have the technology. Usually they use them to detect amino-acid disorders or organic acids. Perhaps if anyone enquires by email, they may agree to do testing. Adult Metabolism Units would seem natural first choices of contact. These links (and the ones in the sidebar in the section : "Peer Evidence for Experts") may be helpful in persuading them about trimethylaminuria and it's prevalence : www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&partid=1103 http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=35056
Listed contacts for trimethylaminuria on Orphanet Orphanet trimethylaminuria link : clinics Orphanet trimethylaminuria link: diagnosis

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