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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

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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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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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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