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MEBO TMAU urine test

MEBO Research
TMAU Urine Test
United States only
PROGRAM IS PERMANENTLY SUSPENDED AS OF 2 MAY 2017

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Test analysis performed in batches of 20 or more

DATE: 2 MAY 2017
Currently on : PROGRAM IS TEMPORARILY SUSPENDED

Samples analyzed since June 2012 :
352
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
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Blog Archive

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/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

Sunday, January 14, 2018

Lawsuit stems from worker's 'chronic body odor'

Chronic body odor is the focus of a lawsuit filed against the city of Indianapolis.

Author: Fatima Hussein, IndyStar
Published: 8:11 AM EST January 2, 2018
IndyStar, Part of USA Today Network

In response to a complaint by a chronic body odor sufferer to HR, the 6-year employment of a lead staff of the U.S. Distric Court for the Southern District of Indiana was terminated because she installed air freshners throughout the work are to "improve the overall quality of air in the office."


The U.S. Equal Employment Opportunity Commission in some cases considers body odor a protected disability...The EEOC's website states the law exists in order to protect individuals from actions based on unfounded assumptions that their relationship to a person with a disability would affect their job performance.

She had an "exemplary and unblemished employment record," according to the complaint.

The ADA prohibits discrimination based on relationship or association with a disabled person...If body odor results from a disability, employers should consider whether reasonable accommodation is appropriate, according to the Job Accommodation Network, a service of the U.S. Labor Department. Accommodations could include allowing flexible restroom breaks, providing a private office with an air-purification system or reassigning the person to a position that does not involve direct contact with the public...

Due to the hard work of the MEBO Directors and volunteers, and by MEBO being an organization member of NORD and EURORDIS, we have elevated consciousness to some extent, to the point of an odor condition to be protected by the U.S. Equal Opportunity Commission and by the American with Disabilities Act. This is a major advancement for sufferers in our community!

By educating ourselves about what has already been accomplished in terms of raising awareness in the U.S. as we have in the U.K., we can see the fruits of our labor come to fruition. We have been recognized by serious, well respected medical institutions, such as those listed below. This in turn, provides ammunition to include body odor sufferers under the protection of the American with Disabilities Act, and possibly other laws in other countries. Our goal is qualify for on the job accommodations whenever possible in order to preserve and protect the dignity of sufferers.

We will follow this case very closely, because the whole legal system in the US is based on precedence - Judgments arrived at in previous litigation. This is definitely a milestone for our community!

It is always a very good idea for sufferers to keep a list of national organizations that validate odor conditions that can protect sufferers under the Americans with Disability Act, or similar programs in other countries.

Some of the best organizations that have represented us well in our efforts to elevate not only TMAU, but other yet to be defined body odor and systemic breath odor conditions, are the following:

The National Organization of Rare Disorders U.S.(NORD)

  • of which MEBO is an organization member.

  • EURORDIS

  • See the links posted in Eurordis about TMAU and MEBO. MEBO has two representatives who are moderators in RareConnect, malory and barnowl. RareConnect offers sufferers a voice in many languages from around the world. MEBO is also listed as an organizations members of RareConnect.

  • Orphanet

  • Severe primary trimethylaminuria
  • Orphanet also mentions the UK part of MEBO, as well as other representatives around Europe. A total of 37 organizations! Very interesting!
  • Orphanet first 2 pages pages of links to TMAU, FMO3, and .

  • U.S. National Library of Medicine (NIH), Genetic Home Reference

  • has links to Trimethylaminuria
  • they list the following:
    ...FMO5 gene: subpopulation with reduced TMA N-oxidation capacity resulting in TMAU
    ...FMO3 gene: More than 25 mutations in the FMO3 gene have been identified in people with TMAU

  • MedlinePlus

  • talks about Metabolic Disorders

  • National Human Genome Research Institute

  • Learning About Trimethylaminuria

  • Genetic and Rare Diseases Information Center (GARD)

  • Is part of NIH National Center for Advancing Translational Sciences
    ...GARD lists MEBO as the organization for Systemic Body Odor and Halitosis



  • María

    María de la Torre
    Founder and Executive Director

    A Public Charity
    maria.delatorre@meboresearch.com
    www.meboresearch.org
    www.mebo.com.br/
    MEBO's Blog (English)
    El Blog de MEBO (español)
    MEBO Brasil - Blog (Portuguese)



    SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
    at no extra cost to you.
    MEBO gets small commission from Amazon.


    get New Posts by EMAIL : Enter your email address :



    A EURORDIS and NORD Member Organization

    Thursday, January 11, 2018

    Announcement: New MEBO Community Outreach Director

    It is with great pleasure that I announce our new MEBO Community Outreach Director in the United States. Akiya J. Browning has accepted this official part of MEBO Research with much enthusiasm, which can best be stated in her own words:


    Maria, it would be my absolute pleasure to become an official part of MEBO Research, and I would be more than happy to accept your offer. I am willing to do whatever it takes to make sure MEBO and TMAU sufferers around the world have the best opportunity to find this community, to help raise awareness, finding support for discovering alternative treatments and eventually a cure, and everything in between. I am truly honored, Maria, and becoming a member of MEBO would be my pride and joy.

    Akiya has been instrumental in demonstrating great initiative in proactively performing work for MEBO that has achieved the goals she mentions above. I am very much looking forward to what she can accomplish for our international community in years to come. For example, she created an image of cards back in 2016, which she had printed, in her effort to raise awareness locally for MEBO and TMAU. She is more than happy to send these cards, free of charge, to to members who may be interested in participating in her Raising Awareness Campaign.



    Below is some information about AJ Browning:


    - (Name) Akiya J. Browning
    - Criminal Justice Undergraduate
    -Emergency Dispatcher for 2 years
    - Raising Awareness locally for MEBO and TMAU for 1 year (and I'd like to send you an image of the cards I ordered last year, and I'm willing to send those cards out to members for free if they're interested)
    - Has had TMAU for over 9 years
    - Volunteer researcher for MEBO group members

    We welcome you as a director with open arms, and I ask everyone in our community to support you in your initiatives.

    María

    María

    María de la Torre
    Founder and Executive Director

    A Public Charity
    maria.delatorre@meboresearch.com
    www.meboresearch.org
    www.mebo.com.br/
    MEBO's Blog (English)
    El Blog de MEBO (español)
    MEBO Brasil - Blog (Portuguese)



    SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
    at no extra cost to you.
    MEBO gets small commission from Amazon.


    get New Posts by EMAIL : Enter your email address :



    A EURORDIS and NORD Member Organization