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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

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Blog Archive

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)

Thursday, October 30, 2008

Poem: '4 walls', by JMF

I am bound by 4 walls
Walls that are both my prison and my sanctuary
But what are the crimes to which I have to pay
Where is the root of my evil
I am a criminal to society
I live in a room with windows I cannot open
And stuff towels underneath doors so that my crimes may not seep below

I am in a prison condemned to by self
Self loathing
Like a murderer I am almost inhumane
More like an animal

My stench is my weapon
Of which I’ve ravaged many lives
Don’t come near her that beast
The killer of special moments
She is not remorseful in continuance of her serial ways, they say

People fear me
Lock their doors and windows so I may not come in
They run to the safety of clean fresh air
Clenching their noses in defense with what ever they may have on hand

To those in the outside world I am more than just a criminal but a threatening disease
I walk into a room and I surround them with my army of scent
As they are surrounded they cannot hide from me as I cannot hide from myself
I find a way into their nose hindering breath and inhalation

My only solace from being a plague to the outside world is the very walls which keep me captive
Walls to which a sole I may never have to see me until I pass the threshold of my room
These walls protect me from my victims as they protect me from my attackers
I’m comfortable here locked away
I worry not
Some days I may pass without a morsel of food or a drop of drink
I just lay in bed
Food and drink don’t nag at my desires
I only think of them when the coast is clear
When I may trapes in the isolated dark hallways of my home
Like a thief in the night

I long very much to leave my safety net
But like the sex offender I know I am unwanted
What are joyous moments of freedom in the faces of disgust, horror, and distaste

But as easy as it would be to stay behind these walls
At times, however, I have no choice but to leave them
I am bindded by bills as I am bindded to pay my debt to society
But the society which mocks and judges me
Does not allow me a method to successfully do so locked away

As a result I am going deeper and deeper into debt
I cannot provide for myself
Not many employers hire criminals
And those that do also employ others who batter me daily with the sharpness of their words

This is my life
A life that consists of 4 walls and what is beyond those walls
Solace within and terror outward
This is the life of a prisoner of self
Prisoner to the crime of T M A U

JMF

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