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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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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)

Wednesday, March 6, 2013

The essence of a sufferer in the film


Source: EL INFORMADOR.COM.MX, Guadalajara, Jalisco, Tuesday, March 5, 2013 ''The boy who smells like fish'', the return of Gonzalo Vega to motion pictures.

The Iberoamerican featured film, "The Boy Who Smells Like Fish" premiered in the Sala Ernesto Gómez Cruz de Expo Guadalajara in the Festival Internacional de Cine en Guadalajara (FICG) on March 5, 2013 [The Guadalajara International Film Festival].

The Mexican actor, Gonzalo Vega celebrates his return to cinema giving life to a peculiar character in this movie (México-Canadá, 2013), which premiered last Saturday in Miami, Florida. He tells us,


The movie deals with acceptance of persons whom, for one reason or another, "we marginalize sometimes voluntarily or involuntarily...For this I sing to hope, to love, to the I don't care what you smell of, what I care about is who you are. To me this is fundamental in the movie.

This article describes how the Film Director, Analeine Cal y Mayor worked with the main actor, Douglas Smith, who played Mica. She points out that it is not so important that the film strive to present that he is a man that smells of fish, but rather that she wants the character be a solitary man, and that he would be disagreeable, but not visually.

That he smells of fish is not as important, I want to create a rare and solitary person. I liked the fact that the disorder is not something visible. Douglas worked on his movements. These are people with very low self-esteem - those that have Trimethylaminuria. He worked on how to walk; he's a bit hunched. He worked on this, and I was interested in it not being visual.

Douglas said that the disorder of his character is very sad, and that one of the goals of the script was to give him a bittersweet and solitary quality throughout the story.

I had the distinct good fortune of having been invited by Analeine to the World Premier of the Film, "The Boy Who Smells Like Fish” in Miami. To have had the privilege of meeting such a kindhearted person as she, was for me an extraordinary experience. I don't know how to express my gratitude to her and to those who took part in the creation of this movie for the good they have done in giving us an avenue with which we can present our cause to the world. Analeine, Doug, Gonzalo and all who participated in this work do understand us well - we are people with low self-esteme, and it is extremely difficult for us to express our pain and to utter our dreams. But luckily, this film presents them all completely, and aspires to tell them to the whole world. A million thanks to all!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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