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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 :
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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

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

Wednesday, May 1, 2013

Raising Awareness Video WTXL, Tallahassee

Posted: Wednesday, May 1, 2013 6:15 pm | Updated: 7:07 pm, Wed May 1, 2013.
Christina Reznack

[Christina] Some sufferers describe their scent as fishy, a reason TMAU has earned the nickname "Fish Odor Syndrome." Others say they smell like garbage, rotten eggs or even burnt rubber.

[Maria] "What happens is there are other chemicals in the body." "Just like any fragrance, if you put some perfume on your skin, it might smell a little different on different people because of each of the various chemicals in your body, so that's why we need to find out about the other chemicals that come through...

I started this company with the idea of trying to unite researchers, experts and sufferers so that we could try to work together. I realized there is some information, I just didn't know where to look, and there was a tremendous need to bring all this information together. So I did."

[Christina] For people like Mardis, it is another outlet for her to spread her message of hope.

[Lisa] "I'm here to let you know that you are a beautiful person, and unique, and never give up," Mardis said, "Because there is hope out there. We can support one another. We can be there for one another."

[Christina] To learn more about TMAU or get involved in helping MEBO's research efforts by donating money or volunteering with the organization, visit their website at

Visit Lisa's support group

Our gratitude goes out to Abe McKinsey for his art contribution.

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A EURORDIS and NORD Member Organization 


Anonymous said...

Thank you Maria. Thank you Lisa . Thank you Abe Abe .

May 3, 2013, 5:20:00 AM
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