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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

Popular Posts (last 30 days)

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Let us know if you want a meetup listed
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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, June 6, 2012

Update: Menssana Alveolar Breath Test Study

The Menssana Alveolar Breath Test exploratory study is moving along quite well. As a reminder any donations to the program may be tax deductible (please discuss this with your tax accountant). 1. Any donations to the program may be tax deductible
2. We all know there is no alternative testing to TMAU
3. Irene will review results of computational analysis and Alveolar Breath Test, and give an assessment/ interpretation of your health profile with Aurametrix.


The results we have received back so far from the initial testers are very uplifting. If you have not seen the sample test results from the earlier post by MEBO, Menssana is able to identify many compounds by name, and provide their alternative names. These compounds are matched to the NIST (National Institute of Standard and Technology) Chemistry Webbook. I know some testers have asked the question, now that I have a list of chemicals from my breath what do I do?

Obviously, this is difficult for MEBO as we want to help sufferers find answer immediately, and understanding this is an exploratory study, the conclusion of the results will not be rendered until the one-year study is completed in April 2013. And we hope sufferers understand this, which most do, since we all know there is no alternative testing to TMAU. Researching each compound using PubMed or MEDLINE will definitely help you in your efforts.


I spoke with Dr. Irene Gabashvili, one of MEBO’s Scientific Directors, and Irene has offered her custom program, Aurametrix, to Breath Testers of the Menssana Alveolar Breath Exploratory Study, who will be able to enter their “Aura” for 5 days, and Irene will review results of computational analysis and breath testing, and give an assessment/interpretation of your health profile. I want to thank Irene for her generous offer to do this. I believe this will help sufferers tremendously. To those that are not familiar with Aurametrix, it is a dynamic program that associates symptoms with triggers associated with body odor, or any other ailment, by keeping a log of your food intake, environment, and your “Aura” - that is how you are feeling relative to the day. It is a very simple tool that allows you to connect the dots (scroll down to see all posts on Aurmetrix) of anything you consume to how you feel. I high recommend the program. I do want to reiterate that Aurametrix is unrelated to the breath test or any other test offered by MEBO.


So far we have not had enough data to make reasonable or detailed assessments, but I would like to highlight a few tester profiles. This is not medical advice or an interpretation of any kind. I am not a medical professional.
  • Testers that complained of Halitosis found a majority of their top 20 VOCs emitted from the breath to be sulfurous compounds, all varied by their compound names.
  • The array of sulfurous compounds demonstrates that the breath test itself is capturing compounds from the oral cavity and the alveolar breath.
  • The commonality between testers was an elevated alveolar gradient of the compound Heptane, 2,4,6-trimethyl or tridecane and Octane,2,3,6-trimethyl compared to the abundance of air.
  • According to a blog post made by Aurametrix, Derivatives of cyclic hydrocarbons - such as Cyclopropane, Limonene, Benzene, Longifolene, and simpler hydrocarbons - Tridecane, Tetradecane, Pentadecane, along with fatty alcohols (octanol) were compounds that range from lemony to gasoline fumes, rubber and stinky bugs.
Testers confirmed fasting prior to the test, which indicates that higher level of sulfur compounds existed in the oral cavity or tongue even before eating. Which one can only assume that these levels may stay constant or increase in levels depending on the type of food intake. One tester tested previously with organoleptic measurements and gas chromatography, and showed measurements consistent with oral halitosis. It is still unclear for these testers the cause, whether the origination is from intra-oral or extra-oral halitosis or both. A report labeled “An Extra-oral halitosis: An Overview” by A Tangerman and E G Winkel indicates

Most reports now agree that the most frequent sources of halitosis exist within the oral cavity and include bacterial reservoirs such as the dorsum of the tongue, saliva and periodontal pockets, where anaerobic bacteria degrade sulfur-containing amino acids to produce the foul smelling volatile sulfur compounds (VSCs), especially hydrogen sulfide (H(2)S) and methyl mercaptan (CH(3)SH).
The mouth accumulates bacteria and foods that contain amino acids, which convert into sulfurous compounds, and foods that contain sugar can increase the amount of harmful bacteria in the mouth causing malodor.

We are working hard to keep the study moving so please remember that this is a multi-site study, and the equipment will be moved onto the next site. We have already received some requests in the Chicago area and unfortunately, these testers will have to wait and see if there is enough demand in Chicago for a later testing date. This might never come to fruition due to the study only being one year in length. We have shipped the Breath Test equipment from Chicago, IL to Miami, FL to prepare for the Miami meet up in a couple of weeks. If you have not already done so, please fill out the requisition form to show your interest. It is important to state your preferred testing location. If you have already filled out the requisition form, you should have already received an invoice from Maria. If you have not received it, please let her know.


As participants of this exploratory study, you can take pride in being a pioneer in our community paving the way towards new discoveries that could change the lives of sufferers around the world and their offsprings.



Managing Director
MEBO Research


MEBO Research

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