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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 :
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

Tuesday, June 22, 2021

Preliminary 1 week results COVID-19 BTN Study

Preliminary results from the
COVID-19 Back-to-Normal research study

Survey in English
eConsent in English
Survey en español
Conentimiento electrónico en español

See above-noted documents for privacy commitments

One week after MEBO launched this study, our MEBO Scientific Director and Founder of Aurametrix, Irene Gabashvili, PhD, writes her first post in her Aurametrix Blog about the preliminary results based on the responses to the survey of the 24 member of the MEBO community and 6 of their family members from various countries around the world. The responses refers to reactions to the Astrazeneca, J&J, Moderna, Pfizer and Sinovac/Coronavac vaccines, documenting the reactions sufferers of breath and body odor have experienced.

Urine and axillary odor are becoming slightly more aversive in healthy humans, as a function of immune activation. But this is not supposed to last too long… Interestingly, Pfizer vaccine that caused no or very mild reactions in several MEBO participants, was also the vaccine that possibly caused temporary worsening of odor symptoms in one person in the community. Another MEBO participant that reported possible worsening of odor from Moderna vaccine had one thing in common with the other individual - they both had pre-existing conditions related to their upper digestive tract. Some Astrazeneca recipients also reported odor issues but did not think it was worse than usual…We'll be posting more observations and comparisons with over 600 participants of our study from other communities.
I [Irene] have a lot of data now on bad adverse reactions to vaccines, so I can answer any questions to those who are still hesitant.
These are just very preliminary results, of course, only one week into the study, and the goal is to ultimately compare them to other communities of persons who do not suffer from odor conditions to determine whether there may be any significant differences.

Irene requests the following from us:
  1. It would be interesting to know if we had more cases of (possible) COVID infections in the group.
  2. We can accept people's stories as e-mails or PMs to or
  3. .
  4. It's OK to skip some questions in the survey.
  5. Even if you were never vaccinated, you are welcome to share your observations about COVID infections or how they avoided COVID.

Message to our community from Irene:
I have a lot of data now on bad adverse reactions to vaccines, so I can answer any questions to those who are still hesitant. I mean, I agree that some people should be very careful about vaccination as certain pre-existing conditions could cause really bad reactions. Even more so if infected. It's better to know what to expect and to be prepared.
Thank you, Irene for all you do for us on a pro-bono basis. Your dedication to our MEBO community around the world is greatly appreciated beyond words!


María de la Torre
Founder and Executive Director

A Public Charity
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization


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