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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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BO Sufferers Podcasts

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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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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, February 9, 2019

Crissan's Mental Health Column: Resilience

Click to read article




FEBRUARY 2019

MEBO Mental Health Monthly Column
MEBO Mental Health Director
RESILIENCE
Action plan

THE STRONGEST
PEOPLE ARE NOT
THOSE WHO SHOW
STRENGTH IN FRONT
OF US BUT THOSE WHO
WIN BATTLES WE
KNOW NOTHING
ABOUT
In her December Mental Health Column post, Crissan focused on coping with the holidays and offers an action plan for stress management. Now in her February Mental Health Column post, she addresses misconceptions about resilience, the different types of resilience, such as natural, adaptive and restored resilience. She points out the effects stress and trauma tend to have on resilience over time, and elaborates on the concept of Locus of control, differentiating between internal and external locus of control. Two pages of this paper expounds indepth discussion on how to increase resilience, with step by step methods of how to develop it.


Resilience is not a trait, but rather a set of skills that can be developed with practice. Malodor and PATM patients can learn to be resilient in order to deal with the hardships they encounter on a daily bases. Sometimes this can come easy, other times it can be difficult, but with training it can definitely be attainable.

The love and care with which Crissan takes her time to write these articles for us never ceases to amaze me. She does so with such careful thought to make sure we get it right. We can freely make use of the valuable tools with which she provides us in order to attain the wherewithal to improve our lives. She gives her heart and soul to lift up our community so that each can find happiness and peace. Thank you for this, Crissan!


María

 María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

posted by Maria de la Torre on 2/09/2019
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