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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, April 6, 2011

Skype group chat with the Washington DC 2011

TO OUR INTERNATIONAL COMMUNITY (including the US)

We are hoping to be able to let those members of our international community who can go on the internet join in the meetup for FREE in some ways. One way we will be with a Skype group live call, which also has a chat feature. Anyone wishing to join this call will require to have a headset or computer speakers, and a microphone (built in on your computer, webcams, or separate microphone attachment). Hopefully, you would be able to ask questions or comment during the Q & A session of each in this group Skype call.


Note : The usual US Bi-weekly phone conference line will also be available to dial into the meetup.
USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix


Privacy : If concerned about privacy, it is best to set up a new skype account using false details etc., and forward that username to us at meetup@meboresearch.org.

In order to do this, you would need to install Skype in your computer by Friday night. This is the way to do it:
  1. You can install the free Skype program using this Link
  2. click on the "Join Skype" button in the upper right of the page.
  3. If you don't already have a Skype account, you can create one using whatever name you like, your username on any forum would be good, but any other you prefer would be fine.

Once installed, or if you already have a Skype account, please follow these steps:
  1. click on Contacts on the upper right menubar
  2. Click on Add a Contact
  3. Add contact Username: meboreserach and then click on "Add." This will generate an invitation to MEBO, and you will then be accepted by MEBO into the conference group. I think there might be a limit as to the amount of people that can be part of a group, possibly 25. We will continue to accept new group members as long as it is accepted.

DEADLINE FOR JOINING THE SKYPE CONFERENCE CALL!
Saturday, April 9th at 11:00a.m./EDT
It is imperative that anyone wishing to join the conference call do so before 11:00a.m., Eastern Daylight Savings Time (EDT) on Saturday, April 9th, because once the conference has begun, your call will not be answered. If you call after 11:00a.m., a very annoying telephone ring will interrupt the conference and others won't be able to hear the call. We will try to program it so that no calls will be able to ring in after 11:00a.m.


It is therefore suggested that you install Skype and join the group today, Thursday, or Friday, AND JOIN THE MEBO GROUP (as per instructions above) to have it done in advance. We won't have time to accept members on Saturday as we eat breakfast as a group and begin our meetup.

You may call in anytime on Saturday between 10:30a.m. and 11:00a.m., even though the session won't begin until 11:00a.m, and you do not have to speak. There will probably not be someone there to talk until 11:00a.m. You might just hear silence or people talking in the background. This way, the circuits won't get busy with everyone calling in at the same time around 11:00a.m.
For those who can't call in, don't worry. We will do all possible to record the whole conference, and all the visual PowerPoint presentations, documents, and links used, will be posted in this blog.



María

María de la Torre
President and Executive Director
A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

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