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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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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

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 area 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 to 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.


  • 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

  • Disease Information Organization: MEBO Research
  • 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 

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