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Saturday, March 17, 2018

2 for 1 research participation

To make your research investment of purchasing the “uBiome Gut: 10% OFF” go further in the research effort, it will serve you even better (2 for the price of 1) if you would also send the email test results to Danny Kunz and his Citizen Research Group in Germany to danny.kunz@gmx.de.

Also please email the results to MEBO's Scientific Director, Irene Gabashvili, PhD. In order to best help you understand these results in relation to your odor condition, you would need to send the results to me to maria.delatorre@meboresearch.org, so that I can de-identify them, and then I'll send them to Irene using DropBox, a more secure way of sending files. Otherwise, you can email your results to Irene directly to irene.gabashvili@meboresearch.org.

Also send the results to me to maria.delatorre@meboresearch.org, so that I can de-identify them, and then I'll send them to Irene using DropBox, a more secure way of sending files. She will then include you data in her study. Otherwise, you can email your results to Irene directly at irene.gabashvili@meboresearch.org.
She will then include you data in her study. Otherwise, you can email your results to Irene directly at irene.gabashvili@meboresearch.org.

Danny and his group are also volunteering to research our community with a very similar research project than Irene Gabashvili is doing.  Danny has asked MEBO for volunteers to participate in their gut microbiome research, as we noted in a MEBO Blog post on January 15, 2018, "Looking for volunteers gut microbiome research!".

Preliminary results and ongoing discussion on their research can be found in their blog, Body Odor Research Blog.

In sum, by sharing your results with both, Irene and Danny, you personally will be participating in two research studies that are independent of each other, while you only purchase one test through uBiome. What a return for your investment! To help, you can click on the “uBiome Gut: 10% OFF” button/icon on the upper right side of this blog and purchase your own gut microbiome test. You will receive your results directly from uBiome.

Please be a part of the MEBO Mission, and volunteer to be a research participant. It will have a great potential to help you and it will have a great potential to help the whole international community!

Thank you!

Below are the instructions provided by him and Kat on January 15, 2018:


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.comhttps://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 danny.kunz@gmx.de) 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

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
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