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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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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NORD Member Organization
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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

Friday, April 6, 2012

Questions and Answers: MEBO-Menssana VOC Alveolar Breath Study

I would like to share with you the following questions I have received from sufferers who are considering participating in the VOC Alveolar Breath Research Study. I hope this presents a more comprehensive picture of what each sufferer is encouraged to participate in not only to obtain answers to one's personal condition, even if only to rule out possibilities, but to also contribute toward research efforts.

NOTE: An invoice with a PayPal button will be sent to you 45 to 30 days prior to the testing date, and payment must be received prior to testing. However sufferers are strongly encouraged to express interest by filling out the Requisition Form as soon as possible in order to encourage MEBO to schedule testing in your area, if enough interest is indicated in your area.

Question: I suffer from body odor, not halitosis. What can this test do for me?

This test is designed to detect alveolar breath, which means that it detects up to 200 compounds that come from the bloodstream through the blood capillaries into the alveolar sacs in the lungs and out in the breath. This test intends to identify some systemic causes of body odor. By systemic, it is meant to be affecting the body generally (vs. locally). In other words, this test is intended to address the concerns of body odor sufferers and sufferers of systemic halitosis.

Question: What is the purpose of this test/study?

This study is strictly exploratory. The Free Dictionary gives a very good definition of the different types of research. It defines exploratory research as, “studies that are merely formative, for the purpose of gaining new insights, discovering new ideas, and increasing knowledge of phenomena.”

MEBO Research is offering this opportunity to carry out an exploratory study because the one and only test available to our community is the TMAU test (urine and DNA). The genetic form of TMAU is certified as a rare disease, affecting only 1-5% of the US population, so what recourse do the other 95% of the population have? The answer is ABSOLUTELY NONE! This is the reason for this exploratory test. Furthermore, many persons diagnosed with TMAU claim that they don’t smell of fish most of the time, but rather of other kinds of odors, such as fecal odor, garbage, sewer, burnt odor, etc. So, could there be other causes of body odor at play? Only exploratory research could attempt to look for answers to these questions.

Question: Would this test give results to the individual testing, or is this only for the whole community?

The individual person testing will receive his or her results, but the interpretation of those results will not become available until after Dr. Michael Phillips, MD, FACP, FRCP, has received one year’s worth of data and arrives at his conclusion. At that time, the individual person can see where his or her results compare to those of other sufferers and a control group, with Dr. Phillips’ interpretation and conclusion.

Question: How is this going the help the community move forward?

Worst-case scenario, this test/study will serve to “rule out” causes. Sufferers are blindly putting themselves on very restrictive diets and taking countless supplements, and spending money, probably unnecessarily, on various treatment and surgical procedures. By ruling out certain causes, sufferers could then feel more comfortable re-introducing foods in their diets, and may decide not to go through with unnecessary treatment or surgical procedures.

Best case scenario would be that we may find an elevated level of one or more odor-producing compound in our community. Dr. Phillips has told us that whatever VOCs are elevated compared to the control group, he will study the metabolic pathways that produce the volatile to define the volatile's metabolic origins (precursor). In doing this, he will point us in the right director for MEBO to pursue more targeted future research.

Question: How long will this breath analysis instrument be at any testing site?

It depends on the demand expressed by sufferers in filling out the Requisition Form. It costs money to ship the instrument to a location and to rent a room where we can collect samples. The funds will come from the $345 participants pay. $300 will go to Menssana for sample analysis, and $45 for shipping and renting the locale.

Question: If the BCA 5.0 instrument is donated, why does the test cost $345?

Normally, Menssana rents out the BCA 5.0 instrument and charges for the analysis of the samples. But they have allowed us to use it for one year without charging MEBO. Menssana charges $300 per sample for analyzing the samples collected, and for analyzing all the data obtained from samples (sufferers’ and control group’s samples), and writing the conclusion to the study.

The cost of the test is $345/USD per person.
This amount does not cover the total cost of this study, and therefore, donations are welcome using the donate button provided below. This exploratory study will benefit our body and breath malodor community, as this is only an initial step towards discovering the causes, treatment, and ultimately, the cure for all types of body odor and halitosis conditions.

MEBO VOC Alveolar Breath Research Study

On behalf of our united international community, I would like to thank you for your participation in whichever way you can.


María de la Torre
Founder and Executive Director

A Public Charity
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baguio said...

I'm not sure what level of interest has been shown in this round of testing, but I would encourage as many of you as possible to participate in this.

Clearly, it's not cheap - but this type of research doesn't come cheap. As I think Mariá alluded to at some point in her blog, we have all spent $ on this product and that product that we thought might help. If you think of all the products you have bought, procedures you have undergone, professional opinions you have sought - and second opinions, etc - within that context, this testing will represent a far greater return on your investment.

As has been pointed out, there should be no expectation of immediate definitive answers. However, it will be a valid stepping stone on the route to us all successfully overcoming this disorder.

Apr 11, 2012, 7:42:00 PM
Maria de la Torre said...

Thanks, Baguio, for your well thought-out argument that is based on very common experiences most, if not all, sufferers have endured. I am happy to say that we have already received 17 filled-out Requisition Forms of people in the United Kingdom, United States, and Spain.

I can fully appreciate that it may take time to be able to afford paying for this test, but do keep in mind that only the Chicago testing is taking place this month, 21st & 22nd of April. The people in the UK seem to want to test in London, so I don't think it's worth the shipping cost to Birmingham, and we'll test in London on a later date.

The following testing site will be in the Miami Beach meetup on June 23rd and 24th, and we've had a good response for that as well.

The more Requisition Forms are submitted, the greater the chances are that testing will be scheduled in strategic locations to ensure that anyone wanting to test will have the opportunity to do so within a years time.

Thanks for your support, Baguio.

Apr 11, 2012, 8:01:00 PM
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