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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

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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, April 20, 2021

UK Politician looking for 'disability ideas'

for UK readers ...
Vicky Foxcroft MP (UK .. Labour).
Shadow Minister for the Disabled.
Looking for ideas to form Disabled Policy UK.
UK readers can write (?)
You need to upload a text file


Vicky Foxcroft (UK MP ... Labour) is the UK Shadow Minister for Disabled People.
It seems she is looking for ideas to form Labour Policy on Disabled issues.

UK readers could therefore probably fill in this form about TMAU/FMO3/Metabolic Malodor etc.
Like most politicians, they are not very tech-savvy, and so you will need to upload a text-file rather than just fill an online form.
Using a PC (Windows), you could use Wordpad.
For Android or Iphone you may need to use a text-file app. 

TMAU is probably the most referred 'disorder' to Adult Metabolic Units, yet Vicky won't have heard of it, as no-one has told her. 
Metabolic Units test the referrals for TMAU, 90% will be (false) negative, so they will log that it's not a big problem, plus its trivial compared to all the other disorders they see.
It's a chance to get TMAU on her radar at least.

The chances of anything useful happening from it (other than awareness) are pretty slim, but better than nothing, and who knows ? 

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A EURORDIS and NORD Member Organization

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