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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


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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

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

Wednesday, February 20, 2019

Live Online Support Group Meetings for MEBO Community

INVITATION AND DETAILS
FIRST SUPPORT GROUP MEETING
FEBRUARY 24, 2019
Click on icon
to see invitation
FEBRUARY 24, 2019

The goal of these meetings is to share experiences, ideas, learn from each other and offer support. Each meeting will be based on a theme, which will be selected by popular vote.
Will you join our very own MEBO Mental Health Director, Crissan Rosalia, Health Psychologist, MSc., on Sunday, February 24, 2019, for the first of many bimonthly online Support Group Meetings? Please join me in this very exciting event in which we can raise questions, share experiences and learn from Crissan and each other as we move forward in our quest to find solutions to TMAU, PATM, and other malodor conditions, which we are currently exploring through research. Crissan will host this and future free online support group for the MEBO, Facebook and RareConnect groups.

Themes can vary from dealing with coworkers, family members, relationships, stress, anxiety, depression etc.
Those who are comfortable with joining in on the conversation with headsets and microphones and do so. Those who prefer to be more private can use the site's chat to participate in discussions or they may opt to just simply listen in.

The following is a message from Crissan to our community explaining her program:



Online support meetings for mental health support


I can offer professional advice and share coping techniques during these meetings, but I believe that we all can learn from each other so the focus will be more on the overall group experience. So everyone can contribute with advice and ideas!
Starting from February I would like to host free online support group meetings for the MEBO, Facebook and Rareconnect groups. Sufferers with TMAU, PATM and other malodor conditions are welcome to attend these meetings. These meetings will be held every two months.

The goal of these meetings is to share experiences, ideas, learn from each other and offer support. Each meeting will be based on a theme, which will be selected by popular vote. So you guys vote and the theme which gets the most votes wins and will be discussed.

We are also looking for volunteers who would like to host weekly meetings in a smaller setting.
Themes can vary from dealing with coworkers, family members, relationships, stress, anxiety, depression etc.

I can offer professional advice and share coping techniques during these meetings, but I believe that we all can learn from each other so the focus will be more on the overall group experience. So everyone can contribute with advice and ideas!

We are also looking for volunteers who would like to host weekly meetings in a smaller setting.

Where to go to join the meeting,


With regards to large meetings taking place every two months, these will be held on Zoom, a private conference call program. Only people who have access and have the meeting password will be admitted. You can attend the meeting with an anonymous name. Camera and headset is preferred but not a requirement. If you want to stay private and just listen in, that would also be okay. We highly value and respect your privacy. Questions can be asked by unmuting your mic or typing in the Q & A box.

Zoom only allows 45 minute calls, so the first part of the meeting will last for 45 minutes. After taking a short break, we can continue with the next part. The limit for each meeting is 100 participants, so it’s important to enroll on time. The language spoken in the meetings is English.

I would be happy to hear what you think about this:

So can you please share:
  1. If you are interested in attending such meetings. ( send me an email at c.rosalia@meboresearch.org)
  2. Which theme would you pick for the first meeting? (Please vote and send the theme of your choice to c.rosalia@meboresearch.org, the choices for the first meeting are a) Coping with Anxiety b) Coping with family members c) How to stay positive and hopeful).
  3. If you would like to volunteer by hosting a weekly support meeting for smaller groups. (send me an email at c.rosalia@meboresearch.org)

Kind regards,

Crissan

So, please join Crissan and me in this very worthwhile and informative session. The following meeting will not be until April, so don't wait until then to get the info you want to be discuss. Come join us!


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization

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