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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

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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

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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

Friday, June 19, 2015

Help ! I Smell of Fish documentary officially on Youtube


Help ! I Smell of Fish
UK documentary about TMAU , circa 2008

This video is a recording of a TV documentary that was aired around 2008 on a UK TV channel. It has now been uploaded by BarcroftTV on their Youtube channel. For many years it was helpfully uploaded to Youtube by a community member, but with Barcroft uploading it along with ads, it seems they will have copyright permission and the video will be there 'officially'.  

On a negative, the comments are pretty disparaging (due to ignorance), but on a positive note it has 45,000 views in 2 weeks, which is a lot for a TMAU video. So hopefully this will reach a far greater audience than previous Youtube uploads on the subject.

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2 comments:

Anonymous said...

Hi, I have been fasting from sunrise to sunset for the last 5 days. This seems to have helped reduce the odour completely. This is obviously not a permanent solution as we need food for normal body function but desperate short time solution.

Jun 22, 2015, 11:23:00 AM
Anonymous said...

It's such a relief to hear the other TMAU sufferers expressing the same feelings that I have had over the years! I realize even more that the feelings of shame, despair,
hopelessness, etc. are brought on by the condition and are not a part of my personality. Thank you for posting this video.

Jun 24, 2015, 11:59:00 PM
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