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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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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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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
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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

Wednesday, June 27, 2018

Q&A RE: MEBO Gut Microbiome Study funded by a uBiome Grant



Irene will focus her research on observing patterns in each participant's gut microbiota and coupling them with their accompanying odor/PATM condition, mood, and mental health...then compare all the participants's observations with each other in order to classify them, while also using all their medical history as reference. A great deal more is involved in this coordinated research effort between MEBO and uBiome...

MEBO Research is most grateful to uBiome for the research grant they have provided us by providing us with kits and by analyzing the gut microbiome samples in their lab for our MEBO Gut Microbiome Study, "Dynamics of the Gut Microbiota in Idiopathic Malodor Production". The Principal Investigator of this MEBO study is our very own Irene Gabashvili, PhD., MEBO Scientific Director. Irene will focus her research on observing patterns in each participant's gut microbiota and coupling them with their accompanying odor/PATM condition, mood, and mental health. Then Irene will compare all the participants's observations with each other in order to classify them, while also using all their medical history as reference. A great deal more is involved in this coordinated research effort between MEBO and uBiome as we share in mutual goals to explore these and other questions throughout this study. Keeping this very simplified explanation of the process in mind could help sufferers understand when the best time to collect their samples would be.

the important thing is to portray the participant's physical state (healthy, sick, tired, high or low odor/PATM levels, etc.) and his/her mental state (depressed, anxious, or any other mental condition), around the time that the samples are collected.
Participants who have received their kits seem to be asking me similar questions. They want to know when they should collect their samples for each of the three kits, and when they should answer the MEBO/PATM Life Quality Test/Consent Form. Perhaps by understanding that there is no hurry to collect the samples, and that the important thing is to portray the participant's physical state (healthy, sick, tired, high or low odor/PATM levels, etc.) and his/her mental state (depressed, anxious, or any other mental condition), around the time that the samples are collected. For this reason, when answering the MEBO/PATM Life Quality Test answers, the participant can refer to a recent social event, large or small, i.e., a party or a private dinner date, in which both the physical and mental state are significant to the participant.

Click on icon for full view
Click on icon for full view
These instructions for the first 2 kits (found in the Consent Form) are in keeping with the study's aim of identifying gut microbiota composition when participants are in each of these 2 physical and emotional states.


We know that many participants have intermittent metabolic odor/PATM symptoms, so it is NOT necessary to rush the sample collection process. It is best to wait for the perfect manifestation of symptoms, or when it is best controlled, as directed. The first collection should take place when symptoms are at their strongest, and the MEBO/PATM Life Quality Test should be taken within a day or two of the elevated symptoms that occurred during a social event.

A participant asked whether she should discontinue taking the supplements that have helped her control her symptoms. The answer is in accordance with the goal of trying to understand the cause of her condition and the physical and emotional effects it has on her. If discontinuing SUPPLEMENTS, not prescribed medications, for a few days to collect the samples and to take the Life Quality Test means that she will get a better picture of the cause and effect of her condition, then it would be helpful to discontinue the supplements until the samples are collected. Please DO NOT discontinue taking prescribed medications for this study! Immediately after collecting the samples, she could start taking the supplements again, since the 2nd kit actually aims to look for any gut microbiota changes that may take place when symptoms are controlled with or without a protocol.

There will be additional updates as this study progresses, so please stay in touch.

My profound thank you goes to all the volunteer participants, the pro-bono services of our Scientist, Irene, and to uBiome for their most generous grant!


María



María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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