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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)

Sunday, October 19, 2008

ANTHOLOGY UPDATE


ANTHOLOGY UPDATE

A publishing company has been found for our anthology. I’ll have more information on this in the next update soon. I need to inform them of what exactly the book will consist of.

There are two purposes for the anthology. One: all proceeds to the book will go to research for better treatment and a cure for what we have. Two: to show the rest of society who we are: that we are not monsters; that we have real emotions, desires, talents; and with our unity we will not silently allow this condition or the rest of the world to step on our lives without a fight.

There are several ways any member can participate in this project.
1) WRITING ONE OR MORE POEMS: The poetry must deal in some way with living with odor. There is no limit on length. Take a look at some of the poetry that have been posted.

2) WRITING AN ESSAY: We all have some type of nightmarish event (or even a humorous one) having to do with odor. The essay doesn’t have to be lengthy. In fact, just two pages will suffice, preferably no less than that. You can read my own four-page essay along with the guidelines on how to write one in this Poetry/Stories section. Even if you don’t care to go 100% by the guidelines, just write it the best way you can. Any mistakes will be corrected for you.

3) WRITING SHORT FICTION: If you would like to write a short story, please write one where at least one of the characters is suffering with an odor condition. The short story below that follows this update will be included in the book.

4) POSTED MESSAGES AND THEIR REPLIES: Certain posted messages along with one or two of their replies will be chosen to be placed into the anthology, but only after the authors have given their permission. If you’ve posted a recent message and you believe it would make a good addition in the anthology, please let me know the exact date it was posted and give me your MSN nickname, full name and what the message or reply is about. My email address richardrcook2@aol.com.

5) DRAWINGS: Our artist, Ben (superbenx2000), is drawing everyone’s picture that will be contributing to the anthology with your permission. The drawings will be placed into the book immediately following a person’s work. If you are participating in some way in this project and you would like to have your drawing in the book, please send your photo to Ben’s email address: superbenx2000@hotmail.com. You can also see his detailed instructions further back (Oct. 16) in this section. Also, give him your full name with your picture.

Richard

Essay and Short Stories Guidelines: Guidelines for writing your odor-related essay for our anthology

Tell your BO experience : be a part of an anthology of short stories and poetry

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