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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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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, August 4, 2018

Crissan Rosalia Mental Health Column: Anxiety Part 2

Click on icon to see paper



AUGUST 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director
ANXIETY
Part 2
Causes, symptoms and diagnosis
of the different types of anxiety
in malodor and PATM patients

Misdiagnosis is very common, due to the incorrect focus and observations of the professional. They discount or have not been able to detect the odor symptoms which can lead to diagnosis with a wrong label.
In her July Mental Health Column, Crissan introduced and defined anxiety, stress and distress in malodor/PATM conditions. In this 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.

Her most interesting conclusion, which is very specific to our community, is that these psychological symptoms of anxiety are not solely based on psychological component, but rather due to the presence of a medical and metabolic condition. She adds, "Misdiagnosis is very common, due to the incorrect focus and observations of the professional. They discount or have not been able to detect the odor symptoms which can lead to diagnosis with a wrong label."

It is also possible that anxiety symptoms are not solely based on a psychological component, but that these symptoms may arise due to the presence of a medical and metabolic condition such as Trimethylaminuria. More research is needed in this area. Some patients have also reported having other conditions, such has heart disease, Diabetes, Asthma, Sjogren’s syndrome and IBS besides Trimethylaminuria which are also correlated to anxiety. Professionals should be careful when diagnosing patients, a more suitable diagnosis might be anxiety due to a medical condition. This implies that the medical condition is the primary condition and the mental symptoms are secondary.

...This implies that the medical condition is the primary condition and the mental symptoms are secondary.


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

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