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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

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Monday, July 27, 2015

TMAU Testimony : StankGirlDiaries on Youtube

StankGirlDiaries is a Youtube user who is using Youtube to blog about her Trimethylaminuria (TMAU). This brave young lady started posting videos over the last few days and has already posted 3, which greatly help to raise awareness of TMAU.

Watch the first video below :  
Suffering in Silence: TMAU Body Fish Odor Rare Disease THE RAW TRUTH



Youtube Channel link : StankGirlDiaries


READ ABOUT AND WATCH PROFESSIONAL VIDEOS 
ON THE SCIENCE OF TRIMETHYLAMINURIA:

REFERENCES


Trimethylaminuria. Genetics Home Reference. January 2013; http://ghr.nlm.nih.gov/condition=trimethylaminuria.

Phillips I, Shephard E. Trimethylaminuria. GeneReviews. April 19, 2011; http://www.ncbi.nlm.nih.gov/books/NBK1103/.

Professor Elizabeth Shephard's Presentation for the Miami Beach Meetup/Conference 2012 - Pharmacogenetics & Personalized Medicine

Professor Elizabeth Shephard TMAU/FMO3 slideshow presentation, Trimethylaminuria and FMO3 metabolic enzyme,for the MEBO Washington DC Conference 2011

You can also read the 11 posts written on the MEBO Blog under Label, 'TMAU management protocol.' Scroll down to the last one (first posted) and proceed to read the newer posts.


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A EURORDIS and NORD Member Organization

1 comments:

Henry said...

I have TMAU Type 2 and I was cured with a course of Fluconazole.

Unfortunatly the symptoms came back after having Antibiotics.

If you are having trouble being diagnosed it may be that you need to have a high choline intake before being tested. or it may be that you have a different disorder such as DMG (Dimethylglycine).

Good Luck
Hope this helps

Jul 28, 2015, 12:40:00 PM
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