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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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Blog Archive

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, January 16, 2013

UK meetup 16th March : York

UK Meetup
16 March 2013

A message from a UK meetup arranger to the community. Everyone welcome.

So we have decided to have another Easter meetup. This time it will be on the weekend prior to Easter Sunday because I know a lot of people have already made plans for that weekend. Also we are going to meet a bit later in the day this time because check in isn't until 3pm in most hotels and I know a few people are thinking of going clubbing later in the evening. So the plan is:            

Meetup at yates bar between 4-5pm (23/03/2013 ( Its looks like one of the nicer Yates bars, big and open plan just how we like it ;-). Have a few drinks and a chat there and then go for dinner. Then I know a few people are planning to make a night of it, not mentioning any names (Claire and Jan). Obviously people are welcome to come and go as they please, everyone will be made to feel welcome. Jan promises to kiss all new arrivals a big kiss. 

The meetups are a great chance to get to know other people with malodour conditions, ask questions and compare protocols/symptoms. Probably more importantly, they give us a chance to relax and enjoy good company without needing to feel self conscious. 

I've had a look and accommodation in York, on the whole it's pretty expensive for that night, but there are a few relatively cheap places. As always book early, if you're unsure whether you're able to attend its still better to book earliy, Just make sure the hotel/B&B offers cancellation insurance when you do. I will be staying at Its the cheapest ive seen so far at £35. There is also the at £44 for the night. Prices started to get crazy after that but if you want some luxury try

As always if you have any question you can message me on Facebook, or text/phone on 07564352288.

Look forward to seeing you all there. 


Anonymous said...

This is good wish I could come and share the experience but am far in kenya it will give me a different experience all the best and share what is discussed

Jan 20, 2013, 3:51:00 AM
Anonymous said...

I have sent an email using the email address given as I wanted to know how new comers are able to recognise the Yates Wine Bar group, however, I've had no response. My mobile number is 07876 500520. If anyone can help I would appreciate it.

Mar 10, 2013, 3:20:00 AM
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