Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Saturday, August 26, 2023

The Timeline of MEBO and PATM studies

In a new blog post, we delve into the evolving landscape of research and community engagement surrounding poorly understood medical conditions MEBO and PATM. The timeline spans from the late 1990s to 2023, capturing key milestones:

Late 1990s - early 2000s: The Dawn of Online Support Forums 

2006-2007: Birth of MEBO and PATM Communities

2008: Broadening the Dialogue

2009: Formalizing Research Efforts

2010: Unveiling the Microbiome and Genetic Factors

2011: The Advent of Genomic Data Sharing

2012: Empowering Patients Through Technology

2013: Deepening Theoretical Insights

2014: Therapeutic Innovations

2015: Expanding Testing and New Molecular Targets

2016: Streamlining Diagnostic Approaches

2017: Diagnostic Breakthroughs and the Social Media Shift

2018-2020: Advancing Research and Understanding

2021-2023: Ongoing Challenges and Future Directions


Despite significant advancements, the post underscores the challenges faced by these communities, including the lack of interest from mainstream science and the absence of definitive cures. It serves as both a historical account and a call to action for increased scientific inquiry into these conditions.

get New Posts by EMAIL : Enter your email address :


A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

This is so impressive. Surely such amazing work will bring about some definitive results in the near future.

Sep 22, 2023, 12:51:00 AM
Post a Comment