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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

Wednesday, December 2, 2015

Living and coping with odor conditions


MENTAL HEALTH FOR SUFFERERS

When nothing more can be done at this time to manage odor, then focus needs to go towards managing emotions, behavior, and mental health. A great deal of sufferers have seen mental health therapists at one time or another to learn how to cope. The problem seems to arise when the therapists insists that you don't have an odor problem because he or she cannot smell you, while others can. See post, 'Do they smell me or not?' http://www.meboblog.com/2011/01/do-they-smell-me-or-not.html

Instead of trying to convince the sufferers that he or she does not have an odor condition, therapy should focus on how to cope socially when we believe people are responding to the odor. We know there is intermittent odor flare ups, and those are the ones we need to learn to manage emotionally and socially.


MEBO has published 19 posts in the MEBO Blog under the mental health category and 13 posts under the 'mental training' category. Some of these posts are more serious in nature and others are less. None of them can replace good mental health therapy.


Scroll down to see all posts in each category below:

Mental Health posts: http://www.meboblog.com/search/label/mental%20health

Mental Health training posts: http://www.meboblog.com/search/label/mental%20training

Posts on Olfactory: http://www.meboblog.com/search/label/olfactory

Posts on MEBO activity against Olfactory Reference Syndrome without much more research on the matter:
http://www.meboblog.com/search/label/Olfactory%20Reference%20Syndrome%20%28ORS%29

Posts on employment: http://www.meboblog.com/search/label/employment%20%2F%20homeworking

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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