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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

Wednesday, May 17, 2017

New paper : TMA producing bacteria in human gut

This is a new paper on which gut microbes may produce trimethylamine (TMA) :

Paper :
Uncovering the trimethylamine-producing bacteria of the human gut microbiota.
Silke Rath, Benjamin Heidrich, Dietmar H. Pieper and Marius Vital.
Helmhotz Center for Infection Research, Germany.

It's being posted quickly so people can read it. On 1st glance the specific 'types' of microbes could not be found by us.

It's not known if :
This is new information.
This will be all the gut microbes ever to blame.
If this type of research needs a 'consensus' and papers will show differing results. (i.e. do the experts agree).

So for now, everyone can read the paper at least

Background :
Humans don't 'eat' TMA (it's unpleasant) not produce it in their system. It is sourced from foods and drinks that contain 'TMA precursors', which then microbes break down the precursor and one by-product is TMA.
Known precursors are :
Choline
Carnitine
TMAO (in fish, broken down to TMA)

Currently advice for TMAU is a 'low precurosr' diet, but choline is an important nutrient.

Longterm it would be better for science to come up with a therapy to :
Block of interfere with TMA formation
Alter the flora away from TMA producers
Some other therapy that blocks, interferes or neutralizes TMA in the gut
   

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A EURORDIS and NORD Member Organization

5 comments:

Anonymous said...

WHAT WE REALLY NEED NOW, IS FOR SOMEONE TO PRODUCE A TMA BLOCKER THAT BLOCKS TMA FROM ENTERING THE GUT AS WELL AS BLOOD STREAM,I'M SURPRISED THAT THIS TYPE OF RESEARCH HAS BEEN GOING ON FOR YEARS, AND NO ONE HAS YET TO FIND A TMA BLOCKER TO BLOCK TMA PRODUCTION, OR A PROBIOTIC THAT WOULD WORK, I JUST DON'T GET IT AT ALL, SO MANY STUDIES BEING DONE WITH LITTLE RESULTS. A TMA BLOCKER WOULD SOLVES ALL THESE PROBLEMS, YET NO ONE HAS YET TO PROVIDE IT.

May 18, 2017, 1:37:00 PM
Mlk3y said...

Big Pharma will never cure this issue even though it is so simply done, they would rather manage it and charge you $$ for drugs that won't work.

May 25, 2017, 9:41:00 AM
Anonymous said...

Any news on ataluren?

Jun 6, 2017, 11:27:00 PM
blogcontributor2 said...

it seems to still be going. got approval in EU but not usa so far. but its only any use for nonsense mutations https://en.wikipedia.org/wiki/Ataluren

Jun 7, 2017, 2:23:00 AM
Anonymous said...

nonsense mutations meaning tmau type 1?

Jun 7, 2017, 11:38:00 PM
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