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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

Monday, December 15, 2008

Many topics were discussed in yesterday's Conference Call

Yesterday's conference call was indeed global since we had callers from the U.S., U.K, and Australia. Kristen called us all the way from Australia, and we discussed the new forum she is creating for us to migrate to before MSN shuts our Support Group forum down in late February 2009. She presented many exciting features that she would like to add to our new forum; and we all agreed that we would first start with establishing a forum in which we could meet as a community to share our thoughts and feelings. Kristen said that this phase of this project would be up and running before the MSN forum goes down. She tells us that all the other features she plans to include will be added afterwards in time. It will be a work in progress for some time to come. This whole community is profoundly grateful to you Kristen for working so hard in keeping us together by providing us with a place we can call home.

Glenna discussed the very viable option of sufferers working from home with their own eBay Store. There have been a few people expressing interest in working from home to avoid the social tensions they have been encountering in their respective jobs as a result of their uncontrolled body odor. Glenna very enthusiastically agreed to be interviewed so that we may post it in this blog. She offered to research information for this interview to help anyone interested in pursuing this job opportunity.

Arun told us about the Christmas Meet-up in London that they had the day before. He was so moved by the experience of having met four new members and six others from previous meet-ups. They discussed how our Group seems to have a higher incidence of certain disorders such as Irritable Bowel Syndrome, Dyspepsia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivities.

Arun expressed his concern about the absence of sufferers in our group from Asia and other continents. He told us that in one of his previous visits to Asia, he posted an add in the local paper asking sufferers to contact him, and he was amazed at the number of very desperate responses he received. We discussed how there may possibly be a language barrier that prevents greater participation from the people in Asia and other continents in our community. We struggled with thoughts of somehow reaching all sufferers throughout the world, knowing that it might not be attainable for the time being.

We wished Arun a heart-felt bon voyage as he leaves Tuesday for Asia. He assured us that he will be in communications with us in our forum, the current one and the new one, and that he will try to set up impromptu conference calls for us to join him in every now and then. Have a great and safe trip Arun!


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