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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

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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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

Sunday, April 19, 2009

Arun returns to our Conference Calls

Today we held our first conference call with Arun since he left for Asia four months ago, and we were very happy to have him back with us again. He told us of his immediate and long-term goal of creating a database to better analyze all the data we contributed to his Survey where nearly 100 participants gave a great deal of information about their condition.
Arun and Kristen are working together on the creation of this database.

He also brought from Asia a video of an interview he conducted with experts who run an odor clinic in Thailand, that Arun plans to post in the forum as soon as he and Kristen get the gallery up and running. Arun also plans to ask sufferers to do a video testimony about their condition for the forum as well.

Once all this data is sorted and organized, protocols will be designed and tested for the various odor types specific to the various body parts most affected. We thank Arun for all this research he is conducting for us; we are most grateful.

Other discussions we held during the call were about diets, especially a fasting diet. It was clearly explained why a ‘wash fast’ is extremely unhealthy, and if pursued long-termed may even be life-threatening. While it is often a good idea to cleanse one's body from all the impurities and odorous VOCs it may have collected through time, it is important to continue giving one's body the necessary nutrients while detoxing. While on this type of fasting diet, the first source of energy will then comes from muscle, so the body breaks down protein from muscle and calcium from the bones and teeth. The body becomes deprived of iron and other minerals with a liquid fast. The potassium needed for proper muscular function, including the heart muscle, is quickly depleted if not consumed with food.

It was recommended that we detox our bodies by eating healthy foods in smaller amounts while letting the body cleans itself out in time. Cardio-vascular exercise is also recommended since it will first clean out your sweat glands of the odorous VOCs, but eventually you will get non-odorous sweat, and you can enjoy a longer period of odor-free time if you maintain the proper diet.

We noted that different callers had different odor triggers, as two members who have not tested positive for TMAU considered their main triggers to be carbs and sugars, especially refined sugars, and others believe their triggers to be proteins, particularly choline. All see stress as a major odor trigger.

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