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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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

Thursday, May 7, 2009

Anthology update #5

I apologize for the lateness of posting the final draft of the anthology, because of computer problems. It will be posted no later than Saturday May 23, 2009 and submitted to our first publishing company no later than Saturday May 30.

To the new members joining the group since January
and who have not read this and the following 2 paragraphs I posted on the General Board, welcome to the group! My name is Rich (or Richard). I am the editor of an anthology book that the group is currently working on. I’ve been away from the board since January. The book consists ff essays, poems, short fiction, certain posted messages that had been chosen from the board, etc. I might be contacting some of you soon to ask for your permission to place any of your posted messages into the anthology.

Please don’t feel intimidated and think that your writing is not good enough to put into our book. Any mistakes will be corrected. We are all amateurs here; none of us have been published yet.

If you want to find out whether this is something you’d be interested in participating in, please contact me at Also, send your work that you wish to be included in the anthology to that email address. New deadline: Friday May, 22, 2009. Let me know if you think you might be a little late.

The following paragraph was taken from the last update posted in January; I want to remind everyone of how we plan to get our book published.

I’ll submit our manuscript to several regular publishing companies first: the ones that don’t require a fee to publish our book. I should hear from our first publishing company 2-4 weeks after they receive our work. If we are rejected by them, I will send our book to the next one until we have exhausted all of our efforts to get it published for free. At that time, we would have to submit the manuscript to a vanity publishing company: one that requires a fee for publication. In this case, we would have to raise anywhere from $500.00 to $800.00 to get our book published. Details on how we can all donate whatever we can will be included in a future update, if necessary. Again, all of this will take place only if we are rejected by all of the free publishing companies we can contact. One way or another, our book will be published.

If you have any questions, please post them on this board. I will answer them as best I can and post the answers. If you prefer, you can also email me your questions.

I need for everyone to keep your fingers and eyes crossed that we won’t have to pay to get our book published. It wouldn’t hurt to cross your toes, too. Or would it?



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