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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
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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

Monday, October 17, 2011

The New MEBO/Menssana Breath Test/Study

Topics discussed in this post:

  • BACKGROUND EFFORTS OF THIS PROGRAM
  • WHO IS MENSSANA, AND HOW CAN THEY HELP US?
  • WHICH PROGRAM WAS SELECTED BY MEBO?
  • WHAT IS INVOLVED IN THE TEST/STUDY PROCESS?
  • WHAT WILL BE DONE WITH THE TEST RESULTS?
  • HOW WILL THIS BENEFIT THE SUFFERER WHO PAID FOR HIS/HER TEST?
  • HOW IS THIS TEST DIFFERENT FROM THOSE WHO TEST FOR ORAL HALITOSIS?

MEBO/Menssana Alveolar Breath Test Study

First of all,I would like to thank Mike, MEBO’s Managing Director and my right hand person in MEBO’s administration, for having taken the initiative
to contact Dr. Michael Phillips, MD, PACP, to initiate this testing process. Mike has written a very good post introducing the program he and Dr. Phillips designed for our community, New alveolar breath test for chemicals study! This post has stirred up our international community with a sense of newly found hope, and your emails have been pouring in to Mike, much to our delight. In an effort to help Mike handle this large volume of emails, I would like to write this post to answer some of your questions.

BACKGROUND EFFORTS OF THIS PROGRAM
MEBO Research first approached Dr. Phillips in January 2009, five (5) months before MEBO registered as a company in England, since we were impressed with his work and credentials. Dr. Phillips was very moved with desire to help our community, but we were so scattered and not organized under one flagship, and the efforts soon fell apart. In fact, it was this very depressing experience that drove me to create MEBO Research registered in the UK and the US, and eventually upgraded to a Charity. Then, Mike joined MEBO now in 2011, and without knowing of our efforts back in 2009, initiated this effort again. He too sensed that we need to “think out of the box” and to think beyond TMAU to research the cause of odor not only of persons who do not suffer with TMAU, but also of those who do suffer with TMAU. This time, Dr. Phillips was impressed at just how far our community has grown and organized in less than three years (3), and was moved to work with Mike to offer us a series of testing/research programs that we could select from, and I’m very happy to say that this is where we are today.

halitosisWHO IS MENSSANA, AND HOW CAN THEY HELP US?
As we published in a post in this blog back in January 2009, Dr Michael Phillips Breath test talk at Pittcon 2009 Chicago, March 10, Menssana’s equipment has been used to perform breath tests sensitive enough to evaluate and predict the following conditions before symptoms are fully manifested,

  • lung cancer *
  • breast cancer *
  • heart transplant rejection *
  • kidney disease
  • ischemic heart disease
  • diabetes mellitus
  • development of the next-generation BCA *

Dr. Phillips assures us that this test is sensitive enough to detect alveolar volatile organic compounds (VOCs), also referred to as odorous chemicals that flow in our blood and comes out in our breath, as well as other “cleansing organs” of our body.
Studies in these areas have been “supported by grant funding from the United States National Institutes of Health” in collaboration with clinical studies noted in Menssana’s website.

With such an impressive level of sensitivity, MEBO became very interested and enthusiastic in pursuing this type of testing for our community. Dr. Phillips assures us that this test is sensitive enough to detect some metabolic deficiencies through the detection of alveolar chemicals, which may include volatile organic compounds (VOCs), or odorous chemicals, that flow in our blood and comes out in our breath, as well as other “cleansing organs” of our body.

WHICH PROGRAM WAS SELECTED BY MEBO RESEARCH, INC.

Based on MEBO’s financial limitations, and with a clear understanding and consideration of the financial limitations of sufferers in the current day global economy, we have selected a program that will be supported with a small grant and sufferer-funded (by persons testing). The small grant will cover the program set-up fee, which includes the cost of a control group of 20 subjects, and each sufferer wishing to test will be charged as low a rate as possible, thanks to the help of MEBO volunteers who offer their time and efforts without compensation.

WHAT IS INVOLVED IN THE TEST/STUDY PROCESS?
The primary focus of the test/study selected is not only to test for systemic halitosis, also known as alveolar halitosis, or bloodborne halitosis, but primarily to identify metabolic malfunctions. By determining the specific chemicals detected in each person’s alveolar breath, and by comparing them to the control group, Dr. Phillip will be able to identify in his study which VOCs are more elevated in sufferers of body odor conditions.

WHAT WILL BE DONE WITH THE TEST RESULTS?
Once identified, the study will involve tracing the source of these VOCs. This stage might also involve other experts in the United States and United Kingdom, who have already offered to assist MEBO in whichever way they can, in addition to Dr. Phillips and his staff. These are the initial questions to be addressed in follow-up studies once data has been collected from the VOCs.
  1. Are the VOCs produced by microorganisms in our gut, and if so, which ones?
  2. Are the VOCs detected in elevated levels the end product of a faulty metabolic system, and if so, which enzymes are involved?
  3. Is there a genetic cause for these elevated levels of particular VOCs?
  4. What treatment protocol would apply to each type of VOC and its cause, as determined by the appropriate test(s)?

HOW WILL THIS BENEFIT THE SUFFERER WHO PAID FOR HIS/HER TEST?
Even though initially the sufferer will only receive a report indicating which VOCs are elevated in their breath, the full interpretation will not be received until the necessary studies addressing the questions above have been concluded.
Even though initially the sufferer will only receive a report indicating which VOCs are elevated in their breath, the full interpretation will not be received until the necessary studies addressing the questions above have been concluded. It is recommended that participants of this study keep their results with them, which may be revisited from time to time as this process unfolds. Not only will information be posted in MEBO’s Blog as it becomes available, so that the community may be informed, but each sufferer who tested will have the advantage of seeing through time how new discoveries relates to their respective test results.
As is apparent in the explanation of this program, it is truly a test/study program, meaning that it is a sufferer-funded test with initial limited results, which then serves as a contribution to a larger research effort. If you are not interested in being part of a larger research effort, this is not for you.

HOW IS THIS TEST DIFFERENT FROM THOSE WHO TEST FOR ORAL HALITOSIS? Oral halitosis testing may involve detection of VOCs produced in the oral cavity, including the dorsal tongue. These tests are available at breath clinics by well renowned dentists and other professionals. The alveolar test performed by Dr. Phillips is much more sensitive, and tests the breath that comes from the lungs that includes chemicals filtered through the lungs and excreted in the breath. In theory, there is a possibility that if the alveolar breath containing chemicals that have a much higher pH, such as trimethylamine (TMA), it could create an altered pH in the mouth contributing to microbial imbalance, and thus conducive to the creation of volatile organic compounds, (odorous chemicals) produced by overpopulated microorganisms. In effect, testing for both, alveolar and oral halitosis would be beneficial because both might need to be treated to control this chronic and persistent condition. However, due to financial limitations, we may only initially perform the alveolar breath test, but this is subject to change. I hope this clarifies some of your concerns, and helps answer some of your questions.

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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