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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

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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 19, 2018

Crissan's Mental Health Column: Coping with the HOLIDAYS


Click to read article




DECEMBER 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director


COPING WITH THE HOLIDAYS
Action plan

In her November Mental Health Column post, Crissan focused on stress management, the effects it has on the body and mind, and techniques for stress management. Now in her December Mental Health Column post, she addresses the challenging yearly issues sufferers of chronic odor/PATM experience during the Holiday season, including being socially active with family and friends, usually sharing a meal, or staying home alone, etc.

The Holidays can also cause the rise of alot of emotions. This period of time can cause feelings of anxiety and depression to arise. Some might also feel lonely due to lack of contact with families and friends. It can be a sentimental time for many people. Especially if you are spending the Holidays alone, you have lost a relative or have cut-off all contact with family and friends...

Action plan
What are you going to do? How do you want to spend your Holidays this year?
Planning ahead and thinking of an action plan can lessen the stress and help you prepare.
– Take some time to decide how you want to spend the Holidays.
– Decide if you're going to spend the Holidays with family or if you'd rather take some time to yourself if possible. Also decide if you're going to follow the protocol. Do you want to stick to your diet or are going to indulge in Holiday foods?


It is wonderful to see the love and care with which Crissan takes her time to write these articles for us, with such careful thought and generous delivery of valuable tools we can use to improve our outlook and our lives. She gives her heart and soul to lift up our community so that each has the wherewithal to find happiness and peace in life. Thank you, Crissan!




María

María de la Torre
Founder and Executive Director

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


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at no extra cost to you.
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A EURORDIS and NORD Member Organization

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