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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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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Saturday, April 6, 2019

Ubiome article about TMA bacteria

Ubiome TMA level example
Ubiome, the innovative Microbiome DNA testing company that MEBO is currently undergoing a joint-study with (about the microbiome of our community) have their own blog.

Their latest post is about the inclusion of an estimation of Trimethylamine levels in your microbiome via their gut microbiome DNA test.
Link to Ubiome TMA blog post

From Ubiome blog post about trimethylamine in the gut :

Choline and carnitine on their own aren’t bad. In fact, choline is an important nutrient that helps your body form stable cell membranes. Carnitine is manufactured by your own body and helps your cells convert fat into energy.

However, certain gut microbes may make these substances problematic for you. When you eat foods containing choline and carnitine, these gut bacteria digest them and produce the compound trimethylamine (TMA). TMA is absorbed into your bloodstream and carried to the liver, which converts it into trimethylene N-oxide (TMAO).

High concentrations of TMAO in your blood are associated with atherosclerosis, cardiovascular disease, and an increased risk of death in patients with stable coronary artery disease. There’s also evidence that TMAO levels increase as kidney function decreases.

The main reason they have started to include TMA estimation will be to do with the Cleveland Clinic theory about TMA-Oxide being associated with heart disease.
But perhaps this was inspired bythe test study program MEBO and Ubiome currently have (making Ubiome aware of TMA).
Whatever the reason, it's good news for TMAU people, as it's another way to monitor TMA levels in the gut (but keep in mind it is an estimation).

Ubiome TMA level estimation :
What Ubiome do is estimate the level of TMA generated from your microbiome by looking at the bacteria they think will generate TMA.
It's not known how much knowledge the world currently has about TMA production in the gut, but it's a very welcome start and surely knowledge will grow (about a volatile that no-one had interest in up until recently).
Re TMA, Ubiome are way ahead of mainstream medicine in taking an interest in TMA (and indeed, in 'fecal body odor' and all forms of malodor that affect our community)   

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