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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
rareconnect.org TMAU

Popular Posts (last 30 days)

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Let us know if you want a meetup listed
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Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, September 19, 2010

Thames Festival Meetup 2010

Click twice on embeded Carnival video for additional footage
As I mention in previous posts, our meetup at the Thames Festival was a special occasion that provided us with a magnificent setting in which to meet very special people. There is such beauty in the distinct uniqueness in each of us just waiting to be released, and this meetup served as a place where our inner selves broke through in a liberating outburst of laughter, contentment, and peace. Stressed and tormented faces turn into a reflection of pure joy in this process, especially when after discussing our conditions with each other, we moved on to enjoy the festivities that surrounded us. On Sunday, we were more actively involved in the events of the Festival as we walked from one end to the other. Although we had plenty of time to discuss protocols and experiences, we made it a point to just share the ‘here and now’ and to feel free to be moved by the music, laugh out loud at our friends' wittiness, feel total pleasure in the company of friends, and to simply rejoice in the moment. It was great fun to be in the company of people with the same ailment, and to feel as if though the condition was nonexistent, even if just for a while. During the meetup one hears comments such as, “…it gave me a chill being among people who have the same problem and who understand…” A meetup acquires a special dimension when after much discussion of various odor-management protocols as well as the sadness and frustration that inherently come with these conditions, a second phase follows promoting healing by simply having fun together! Invariably, this and other meetups turn out to be healing experiences, especially for people who rarely get the opportunity to feel such freedom. I hope this video gives every reader the opportunity to experience with us this sense of "letting go".
María de la Torre Founder and Executive Director MEBO Research maria@meboresearch.org www.meboresearch.org

1 comments:

Anonymous said...

Wow looks like it was a wonderful event. Wish i was there :) Awesome pics btw.

Sep 20, 2010, 2:27:00 AM
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