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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

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to join : go to
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BO Sufferers Podcasts

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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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THE BOY WHO
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TREADING WATER
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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, September 7, 2018

Crissan Rosalia Mental Health Column: Anxiety Part 3

Anxiety Part 3



SEPTEMBER 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director
ANXIETY
Part 3
Prevention, Coping and Treatment
for Anxiety

In her July and August Mental Health Column, Crissan introduced and defined anxiety, stress and distress in malodor/PATM conditions. In her August issue of Part 2 of 3 topics on anxiety, Crissan spotlights the various manifestations of anxiety in the life of a malodor and PATM sufferer, and she portrays factors contributing to the development and intensity of the variety of anxiety disorders. She discusses in a very relevant manner the development process and expression of anxiety in sufferers of these conditions, which include Panic Disorder, Social Phobia, Obsessive Compulsive Disorder (OCD), Post Traumatic Stress Disorder (PTSD), and Generalized Anxiety Disorders.

In Part 3 of this series, Crissan discusses the prevention, coping and treatment for anxiety, indicators of when to seek treatment, how to manage anxiety, and prevention and coping techniques.


Beck Anxiety Inventory


Burns Anxiety Inventory
In addition, Crissan provides us with the Beck Anxiety Inventory and the Burns Anxiety Inventory to assist us in determining the level of anxiety we experience. By clearly seeing and understanding these concepts, we can better understand ourselves, what drives us and what we can do to modify it so that we are more in control over our own lives.

Our most sincere gratitude goes out to Crissan, our MEBO Mental Health Director, for her ongoing dedication to our community!



María

 María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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A EURORDIS and NORD Member Organization

posted by Maria de la Torre on 9/07/2018
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1 comments:

Anonymous said...

After all these years of watching studies move along so slowly, i really believe that forfecal body odor we need a study that sequences the genome of a dozen or more sufferers to see if the participants share any common gene mutuations. Sure, it would cost more than most of the studies to date, but maybe we can finally stop spinning our wheels and point to a heretofore undiscovered gene problem.

Sep 20, 2018, 8:45:00 PM
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