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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
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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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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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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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


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Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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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, November 18, 2011

Are you helpless / vulnerable OR IN CONTROL?

What can a sufferer expect once he or she determines which odor-management protocol best controls his or her respective odor type?

Having a secure feeling of being in control automatically reduces anxiety and promotes a happier and healthier social life.
Sadly, the answer is to be deprived of eating foods one enjoys! Since odor-management is a lifestyle that pretty much denies the sufferer the pleasure of eating his or her favorite trigger foods, a sufferer will inevitably give in to temptation and may sooner or later eat the "forbidden fruit," especially in special social events.

But, should this person consequently feel guilty? Is this wrong? And if so, why? After all, it's one's own body and the decision whether to eat or not to eat should rest solely on the person involved! In fact, we do need to consume choline and other important nutrients that our odor-management protocol may deprive us of.


These are a few questions each sufferer needs to ask regarding his or her individual body’s reaction to trigger foods:
  1. How much of a certain trigger food can I eat before the odor kicks in?
  2. How long will it take me to clean a trigger food out of my system?
  3. Since cardiovascular exercise speeds up the "cleansing" process with deep breathing and excessive sweating, how much exercise do I need to do and for how long to bring down the odor level?
  4. What side effects do I get when I have odor? (physical and/or emotional)? Am I willing to face these side effects after eating a favorite trigger food?
  5. What social events will I be attending after eating my favorite trigger foods?

The answers to these questions are as unique as each individual is unique.


HELPLESS AND VULNERABLE OR IN CONTROL?
The important consideration in order to have control is to know which the trigger foods are, what one's saturation level is, and how long it will take to "clean out" one's system after indulging.
The most psychologically disturbing aspect about living with an odor condition is feeling totally out of control and vulnerable to social ostracization because one emits odor. This uncertainty triggers generalized anxiety because of the unpredictability of potential socially embarrassing and emotionally painful events. So what is the opposite of feeling out of control and vulnerable? Being in control when making wise personal decisions! Having a secure feeling of being in control automatically reduces anxiety and promotes a happier and healthier social life.

It's important to understand well which are one's individual trigger foods, as opposed to other sufferers' trigger foods. With this awareness, the sufferer can decide when to break the diet and enjoy his or her favorite food. This way, the sufferer can decide what level of odor is an acceptable consequence and when to consume it. The important consideration in order to have control is to know which the trigger foods are, what one's saturation level is, and how long it will take to "clean out" one's system after indulging. Armed with this knowledge, a sufferer can take charge and make controlled personal decisions based on this understanding from time to time.

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition
body odor petition
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