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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)

Friday, September 5, 2008

Update 3 on the UK self-testing TMAU (urine test) saga






Latest:
Emed have said by email they would act as 'referrer' for the TMAU urine test via TDL (the doctors laboratory). That would make the price of the TMAU urine test £160 + £20 annual membership of Emed + £15 Emed 'consultation' charge. A separate post will be done about Emed later. Unexpected procedural problems cannot be predicted at the moment, so unfortunately anyone choosing this route does so as a pioneer.

Presumed procedure would be like:
Join Emed (£20)
Tell them you want to do the TMAU urine test via TDL (£15 + £160 for test)
They contact TDL who send a kit out.
Presumably there is some sort of proof that TDL need that a Dr ordered it and this goes with the kit on return (?).

An important remaining issue is the testing procedure of TDLs TMAU urine test. They have been emailed about this and you will be updated once they reply.

The 'sample code' on the TDL site lists the TMAU urine test as being 'PU', which they list as meaning :
30ml aliquot from a 24-hour urine collection with 10ml of 0.1N hydrochloric acid added 
– state total volume
http://www.tdlpathology.com TMAU urine test page
http://www.tdlpathology.com sample code page

This is the same supplier that Medichecks use.

If anyone has any better ways to enable direct testing, please let us know

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