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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 8, 2008

Synopsis of Sunday's conference call by JMF

For anyone who missed the conference call they were very much missed. Here are some important highlights of the call.

Well firstly, Arun, our resident scientist was on the call Sunday. For those who don’t know it, Arun will be away for 4 months in Asia, so this is one of the last two calls he will probably be on till after that time. You still have one more opportunity to talk and listen to Arun this coming Sunday December 14th.

Arun touched on a number of topics, the first is what will happen once our stay on the MSN board ends? He informed us that he has bought a domain and that Kristen and her boyfriend will start working on the site. The site is not up and will not be up until probably after February, but it will be something to look forward to. The new site will consist of a database to hold the data from his surveys. It will have somewhere for us to upload videos and a section for our corporation and support group. Please be at our next conference for more details.

He also touched on the success of his most recent survey. A couple of years ago Arun did a survey and he only received 7 responses. And this time around, he had 98 responses. With his effort of spreading the word of the survey they received much success. He has shown this data to Dr Lachman, our consultant in metabolic medicine, whom took time to answer a many questions. We thank you Dr. Lachman.

But, Arun was going on about the importance of these surveys and to the research in getting an understanding of our conditions. In the future we need to get at least 120 replies to these surveys, so everyone’s participation is necessary. The more we participate, the more insight we will have into our condition, triggers to it, and how we can manage it.

As well, Mrs. Blog herself was on, our very special Mrs. Maria, to give us information on our upcoming Meet-up. She and Mr. Arun created a message board to discuss the trip. On this board will be up-to date information. For everyone coming it is best to go on the strand and tell us whether you will want to stay solo, share a space, etc. We need to get a number of who is coming and living arrangements, because there are some who would feel it would be more economical to split condos.

As well those that want to drive down please come on and connect on this strand so that you pick up people or get with others either farthest west going east or farthest north. Or for those that want to take the bus or train and meet at a location than drive down. This board, on the MSN will be there for all of these things.

We will be posting possible joint stay options, however we would advise you also look and see what you like as well and post it on the board in terms of condos so that we can look them over for you guys. I know many of you will be coming and we want things to go smoothly and that you are happy with your accommodations.

Maria and I will be here to answer any questions you may have. If anyone has any other question go to the MSN site or reach me at I hope that I am able to hear from all of you who were unable to make to call. I also hope you guys will be on the call to wish Arun a fond farewell. THE NEXT CALL WILL BE TAKING PLACE ON DECEMBER 14TH, HOPE TO HEAR ALL YOU THERE.



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