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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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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

Saturday, June 25, 2011

The moment of truth is now - PETITION

Every once in a while, we are faced with a moment of truth, a moment in which we can be valiant and stand up and make a difference, and that moment is now.
Why is it so difficult for the body malodor and halitosis community to be acknowledged as an entity that needs attention by the scientific/medical community and society at large in order to obtain the help needed? What puts our community in last place in any attention-getting efforts compare to other “popular” diseases?

The nature of this condition drives the sufferer to feel embarrassment at all times, in all social situation, thus driving the individual towards social isolation. Many persons fight through this obstacle and manage to find employment and to create a family with a life partner and have children, yet there is always an omnipresent underlying anxiety of living with this embarrassment and shame.

This way, we can overcome the frequent objection to funding research which claims that we are small in numbers and not worth the investment.
So for a sufferer to be asked to participate in a raising awareness project to promote research, treatment, and a cure, is a very threatening prospect because it basically calls for the individual to come out of his or her safety zone and to come out of “hiding.” Nevertheless, it is the ONLY way that research, treatment, and a cure can be obtained! This way, we can overcome the frequent objection to funding research which claims that we are small in numbers and not worth the investment.

This is the time to make a decision to be strong, to stand up and take action, to make a difference, and to make it better!
Throughout our lives we are faced with many challenges that we would prefer never existed, and this one is near the top of the list. In the end, like every other aspect of our lives, we will be held accountable for our actions, if to no one else, to ourselves and even more painfully, to our offspring. Every once in a while, we are faced with a moment of truth, a moment in which we can be valiant and stand up and make a difference, and that moment is now. This is the time to make a decision to be strong, to stand up and take action, to make a difference, and to make it better!


PLEASE SIGN THE PETITION TO,

  • raise awareness of systemic body odor conditions in the medical community
  • governments to increase direct federal funding
  • make scientific research of various types of body odor diseases a high-priority; including but not limited to, Trimethylamimuria (TMAU)
  • efforts so that effective treatments and cures can be found.

PLEASE ASK YOUR FAMILY, FRIENDS, AND SUPPORTERS TO SIGN.
Anyone can select to either display or not display
his or her signature publicly on the petition.


Thank you for your participation in finding a solution,

María


María de la Torre
Founder and Executive Director

A Public Charity

www.meboresearch.org

maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

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