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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)

Friday, March 19, 2010

At Pawsibilities Unleashed in Frankfort Kentucky to see our TMAU service puppy


vallie tmau dog
Liz Norris is preparing Vallie for us to take her to the meetup in Nashville for the weekend. Liz spent so much of her valuable time teaching us how to handle and train Vallie, along with the harness, Service Dog bags and official SD documents, food, treats, toy and literature, including pictures and writeups of Vallie's prize winning extended family.

Vallie is a very happy energetic puppy who LOVES to train with Liz (and now with us), and want to keep on doing it even after Liz stops. Liz and Vallie gave us a demonstration on the training technique utilizing a treadmill to teach Vallie how to walk on a moving sidewalk. They also showed us how she works in tunnels and slides for find and rescue jobs, and to play with children on a slide. Vallie kept returning to the tunnels and slide even after the training session ended. SHE LOVES IT!

I was so discretely moved to tears with Vallie's beauty and potential for our community. Vallie noticed because of the scent of odorous compounds in tears, and she stopped what she was doing and came over to me to give me some love and to cheer me up! Talking about a Mental Health Service Dog! This came spontaneously from within her! It was an innate nurturing response to sadness, depression, happiness, and joy all bundled up together into a swelling tear in each of my eyes. WE NEED HER SO MUCH! We need many more like her too.

Vallie was naturally drawn to a specific body odor emitted from one of us. We noticed and Liz confirmed it without us having asked. Liz says that when a dog detects an odor, it doesn't matter whether it is detected by others or by scientific equipment - THE ODOR IS PRESENT! The dogs don't ever mistake this. A scent is a scent, is a scent, not to be confused by any other scent or denied, as it is real because the dog detected it. A trained service dog can be of great research and diagnostic assistance.


Vallie was naturally attracted to a scent I could not detect
Tomorrow we bring Vallie to our meetup. Let's see what she discovers in us at all levels, physically and emotionally. AND SHE'S ONLY 4 MONTHS OLD! Imagine when she's one year old, two years old, etc.

to be continued tomorrow...
Maria and Vallie

-- Sent from my Palm Pre


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