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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

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

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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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.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
www.meboresearch.org
www.mebo.com.br/
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2 comments:

Anonymous said...

I have recieved my kit and will be sending back to usa soon.....so 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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