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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
rareconnect.org TMAU

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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

Friday, May 27, 2011

TMAU Foundation website

TMAU Foundation website
We are pleased to make you aware of the TMAU Foundation website. The TMAU Foundation, a non-profit charity, has for many years been working to help those with TMAU. The website is not fully completed yet.

Note from Maria:
My congratulations goes out to the web designer of this site and everyone who contributed to its creation. My favorite section is the Home tab on the main menubar, which has 3 subsections, Trimethylaminuria, Food Guidelines, and Choline Chart. I am most certainly bookmarking this site because it is bound to have much valuable information on TMAU. Congratulations to everyone involved with this very important organization - one of the oldest, if not the oldest TMAU sufferer founded organization.

María

3 comments:

joan jones said...

I started a petition for TMAU on the white house blog site tonight! I am a longtime sufferer who is fed up with this condition not being labled a disability! I need help...I did all this on my phone...I have typed to about 4 tmau groups no replies as yet??? They emailed a copy of the petition but we NEED 150 SIGNATURES SO THE PETITION CAN BE POSTED ON THE BLOG AND WE NEED 25,OOO SIGNATURES FOR THIS PETITION TO BE REVIEWED BY THE WHITE HOUSE!1 THIS IS HUGE THIS CAN LEAD TO RESEARCH...AND RECOGNITION ABOUT THIS CONDITION....I NEED HELP AND YOUR ACCESS TO THE PUBLIC PLEASE HELP US MY EMAIL IS JURANYA8@GMAIL.com OR JURANYA8@YAHOO.com OUR TIME IS NOW!!

Apr 16, 2012, 1:46:00 AM
joan jones said...

I started a petition for TMAU on the white house blog site tonight! I am a longtime sufferer who is fed up with this condition not being labled a disability! I need help...I did all this on my phone...I have typed to about 4 tmau groups no replies as yet??? They emailed a copy of the petition but we NEED 150 SIGNATURES SO THE PETITION CAN BE POSTED ON THE BLOG AND WE NEED 25,OOO SIGNATURES FOR THIS PETITION TO BE REVIEWED BY THE WHITE HOUSE!1 THIS IS HUGE THIS CAN LEAD TO RESEARCH...AND RECOGNITION ABOUT THIS CONDITION....I NEED HELP AND YOUR ACCESS TO THE PUBLIC PLEASE HELP US MY EMAIL IS JURANYA8@GMAIL.com OR JURANYA8@YAHOO.com OUR TIME IS NOW!!

Apr 16, 2012, 1:48:00 AM
joan jones said...

You Can View the petition and get others to sign by signing onto URL http:wh.govuko...please we need to get 150 signatures within 30 days for this petition to hit the white house blog...then 25,000 signature for the WHITE HOUSE TO REVIEW OUR PETITION SO PLEASE USE FACEBOOK...TWITTER..EMAIL FRIENDS AND FAMILY MY EMAIL ADDRESS IS Juranya8 @gmail.com let's bring this HORRIBLE CONDITION TO LIGHT! THANKS JOAN JONES

Apr 16, 2012, 1:35:00 PM
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