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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

Popular Posts (last 30 days)

Upcoming get-togethers


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Blog Archive

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)

Thursday, August 1, 2019

USA TMAU Petition reaches 1000

A TMAU petition started in Jan 2019 has reached 1000+ signers

It is mainly for the USA (to POTUS)
but is also for the world.

It goes to show how a petition in the right place on the internet (i.e. perhaps gets a good google ranking) can passively get the signatures without people noticing.

USA (and world) TMAU Research Petition on Change.org 

Also ...


Some thoughts on Petitions
Petitions will be trial and error.
Some will take off while most won't.

Each time we will learn more about the 'art'.
e.g.
Who is the petition to ?
(a good target is good. A decision maker or makers ?)

What's it about ?
If it's about metabolic smelling, maybe just stick to just that ?
met-bo will be completely new to them, so maybe separate other conditions ?
e.g. if you say BO/halitosis they might think normal BO.
Metabolic is a completely new concept to them.
The petition starter can do whatever they want !

What do you want to happen ? 
Can be general, such as acknowledge or ask for research funding.
Could put in 'simple' actions, such as meet with the head of NIH.
Request TMAU test to be a consumer test etc.
Maybe a long-term goal and short-term simple goals.
Whatever.

Any petition is a bonus. 

Some petition sites
Whitehouse USA ... 30 days to get 100k signers
Change.org infinite time ?
Gov.uk petition ... 6 months to get 10k 

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A EURORDIS and NORD Member Organization

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