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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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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

Monday, January 15, 2018

Looking for volunteers gut microbiome research!

Please participate in this research study

For years, MEBO has been looking for an opportunity to find researchers that would be interested in an exploratory study of sufferers' gut microbiome in order to begin to identify which gut microbes are the culprit in producing odorous chemicals in our bodies. It has always been very expensive to get the necessary test for this, and even when one would become available, there was no research in place to compare the results with other persons who suffer from an odor condition.

The great thing about using uBiome's "smart gut" test is that it is currently covered by most U.S. health insurances. This makes it free for all persons residing in the US with valid health insurance!
Thankfully, the citizen research group from Germany is organizing an exploratory study using uBiome's fecal microbiome test, which involves genetic sequencing techniques. The great thing about using uBiome's "smart gut" test is that it is currently covered by most U.S. health insurances. This makes it free for all persons residing in the US with valid health insurance! If not, uBiome also provides other payment alternatives (see quoted text below).

If this research group manages to get 10 to 20 test results, it would be enough to make general statements about rare bacteria in the gut flora of body odor patients.
Sufferers are encouraged to then donate their test results to the citizen research group from Germany so that they can collect and compare the results. If this research group manages to get 10 to 20 test results, it would be enough to make general statements about rare bacteria in the gut flora of body odor patients. This is exactly what MEBO has been pursuing for years! It could potentially be most beneficial in acquiring better understanding of the various causes of breath and body odor conditions, if many sufferers volunteer for this research.

A member of this citizen research group from Germany, Danny Kunz donated a very interesting PowerPoint presentation for the MEBO Conference 2017, Metabolic pathway simulations on Aprocrine Bromhidrosis compared to Trimethylaminuria.

This research group also update their Body Odor Research Blog with interesting data they acquire through their research efforts.

Below are the instructions provided by him and Kat:

We are a small, citizen research group from Germany and have spent the last 1.5 years researching metabolic and genetic causes of body odour. Recently, we were approached by one of the body odour patients that we are in regular correspondence with, and were told about the following website and test provider:
uBiome (https://ubiome.com

As a San Francisco-based biotech company, uBiome offers fecal microbiome tests using genetic sequencing techniques. Some of you may have already tested your gut flora for healthy and pathogenic bacteria, especially if your body odour comes with IBS-d or IBS-c symptoms. UBiome offers the same service using a different, more modern technique.

The advantage for body odour patients in the USA is that their "smart gut" test (blue product) is currently covered by US health insurance. This makes this test FREE for all US citizens with valid health insurance! If you are uninsured, they ask you to contact their customer support to arrange for a reduced pricing scheme. If your doctor won't approve your test they also ask you to contact customer support because they can "connect you with an independet healthcare provider in [their] external clinical care network" (see website) to make sure you get the test done.

Their test is primarily aimed at people with gut conditions such as inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) including ulcerative colitis, people with symptoms such as constipation, diarrhea or bloating, plus people with diabetes or obesity. As you can see, the symptoms are fairly broad. The results you get include a Diversity Score which tells you if your gut flora contains any type of especially rare bacteria, which we think is quite relevant for body odour patients!

If you are not living in the USA but still think this tests sounds interesting: Their "explorer" test (orange product) is availble globally and without a doctor's approval. It costs 89$ for a one-time purchase and also includes the "Diversity Score". They offer a variety of other, broader products (more testing sites, testing offer time, ...) but we think the cheapest option should be enough to start with. As is common in companies providing medical testing, especially without doctors involvment, they caution that their tests are not for self-diagnosis. This is done for legal reasons as only doctors are allowed to provide diagnoses.

We think this test is a really great opportunity for the body odour community to collect information about our gut bacteria for no to very little money! This is why we ask all of you for two things:
- get this test done to educate yourself and learn about your good, bad and rare bacteria!
- donate your test results to us (email to so that we can collect and compare the results of you all. If we get the results from 10-20 tests, this will be enough to make general statements about rare bacteria in the gut flora of body odour patients and the whole community will benefit from this!

In 6 weeks it is Rare Disease Day again and the theme will be Research - again! Let's start off this year by getting 10 testers together by Rare Disease Day 2018 so that we can drive and organize our own research!
Our results will be shared with the Mebo team and the TMAU UP podcast as soon as they are available 🙂

Please be a part of this research study, if it at all within your power to do so! Each one of us can be a part of the solution our community is looking for as part of the MEBO Mission. Our most profound gratitude goes to Danny, Kat, and the rest of the citizen research group in Germany for this invaluable opportunity!


María de la Torre
Founder and Executive Director

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Anonymous said...

I have recieved my kit and will be sending back to usa there is at least one for your study!

Jan 30, 2018, 4:13:00 PM
Anonymous said...

I just sent the results of my study. I hope they are still accepting them.

Feb 7, 2018, 12:39:00 PM
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