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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

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MEBO Map Testing & Meetups

Full details :
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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
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

Friday, November 16, 2012

Volunteers needed for MEBO Research's 2013 Grant-Seeking Campaign

One of MEBO Research's aims for the year 2013 is to embark on a vigorous grant-seeking campaign to assist our experts around the world in carrying out their research proposals for our community.


One of the tools we wish to use is our MEBO, donation-funded video, in which Cheryl Fields presents a "TMAU sufferer's perspective." This powerful tool has had over 2500 hits in only 9 months! Cheryl agrees that we should modify it as needed in order to create one or more different versions showcasing the need for the research project(s) at hand.

For research into TMAU, the video would be modified to include one of MEBO's Scientific Advisors' explanation of Primary and Secondary TMAU, and how the proposed research would benefit sufferers. Another version could be focused on FMO3 deficiencies, not exclusively TMAU related, but perhaps of other types of body and breath odor conditions and medical conditions as explained in Dr. Elizabeth Shephard's PowerPoint presentation for the 2012 MEBO Miami Beach Meetup. As we progress with researching other types of body odor conditions, MEBO can either continue to create different versions of this video, or to create new donation-funded videos that we could use to approach various potential research benefactors around the world.

any limitations we have experienced throughout the years...could have been easily overcome simply by increasing community involvement.
To carry out this video campaign to its optimum potential, we need for the videos to be the property of MEBO Research, funded by donations from sufferers for this purpose in order to avoid any copyright infringements. To carry out this campaign effectively, MEBO needs to call upon every sufferer in our international community to become involved in one way or another.

Ideally, the following are the talents and contributions we need from our community for this purpose:
  1. A video technician or photographer who can provide the same quality video production Amy Jarvis created with Cheryl's video,
  2. Persons who are photogenic and charismatic public speakers, such as Cheryl and Karen, who can represent sufferers around the world by delivering our message in a powerful manner,
  3. MEBO's Scientific Advisors, who have already volunteered their services countless times to our community,
  4. Donations from our international community to help meet the production cost of these videos.

THE ANSWERS: Give this question much thought, and consider the following:
  • "WHAT CAN I DO?" Instead of thinking what ideas you can present that others can do, think of an idea that YOU can do with others or by yourself. Think of how you can transform your idea into reality. Don't hesitate to ask MEBO for help, and everything possible will be done to bring sufferers with common goals together to achieve them.
    THIS NEED IS HIGHLY RESPECTED BY MEBO RESEARCH; all you need to do is say so.
    The biggest factor holding sufferers back from volunteering their services is the need for anonymity and privacy, and their fear that this would be an impossibility. You are not alone. Most of the MEBO volunteers are completely anonymous, and our international community doesn't even know they exist, or how much they have contributed to our cause. You can be one of these very active, yet anonymous, volunteers.

I can't stress enough how any limitations we have experienced throughout the years in getting all the necessary research off the ground could could have been easily overcome simply by increasing community involvement. It is easy to understand how a small group of people can only realize small accomplishments, whereas a larger group of people working together towards a common goal would only increase the chances of achieving great feats that have always been out of our reach.

Everything MEBO Research has accomplished in only five years has been on the backs of volunteers who don't want to sit back helplessly, but instead want to take action to become empowered to change our reality. I would like to invite as many of you to please be a part of this call for change in our lives. We refuse to surrender to this condition as an inevitable reality - WE CAN BRING ABOUT CHANGE. It's a personal choice to be a part of the solution.



María de la Torre
Founder and Executive Director

A Public Charity
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