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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
rareconnect.org TMAU

Popular Posts (last 30 days)

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Blog Archive

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)

Tuesday, June 21, 2022

Campaign for choline testing TMAU patients

CAMPAIGN TO ASK FOR CHOLINE TESTING FOR TMAU PATIENTS  

Choline does not seem to be tested by health services.
Even a private lab is impossible to find.

TMAU cases have a right to choline testing.

Why ?
TMAU people are probably prone to TMA-dysbiosis. TMA destroys diet choline in the gut.
There must be a good chance TMAU people are always choline deficient. 
Choline is important for health, especially the liver (anti-NAFLD ... it's a fat decongester) and brain (it's part of acetyl-choline).
Ironically TMAU patients are told by consultants to go on a low choline diet.

How would the TMAU-prone get choline ?
Currently it would need to be via injection.

Whatever, a test can rule this theory in/out.

Hence the campaign : TMAU people have a right to choline testing.
This should be along with the TMAU urine and DNA test.
(FMO3 gene test is recommended more than the TMAU urine test, but you have a right to both).

TMAU urine test :
Very few labs test, but they seem to use the same method, which results in 0 TMAU2 cases.
A suspicion is the TMAU urine test only spots severe genetic cases. which is maybe like 5% cases.
This would mean 95%  'mild genetic' cases being missed (gene test should spot some, but not all).
Nigels pre-2017 Sheffield test seemed to spot quite a few 'mild TMAU1' cases and had mostly TMAU2 cases. That method was replaced in 2017 by the one used in most other labs, and now there are 0 TMAU2 cases and much reduced TMAU1 cases.

Choline test a better 'FMO3 malodor' test ?
Maybe choline is a better biomarker. 
Maybe not, but maybe.

Could the smells be 'chronic choline deficiency' ?
There's an outside chance. Who knows.
Testing would at least spot a deficiency.

Choline's importance for general health is currently underestimated by society.

So a TMAU patient 1st visit should be along the lines :
FMO3 gene test.
TMAU urine test
Choline blood test

Choline testing should be followed up a few times.

What to do re the campaign ?
Anyone seeing a metabolic consultant, mention choline testing. This is to pressure them long-term. They will probably reject individually, but health professional mindsets are like turning tankers around.
Mention to Dr.
Write to politician.
etc.

Dr Steven Zeisel is seen as the 'godfather' of choline understanding in humans.
(probably a bit behind the curve imho)
Here he talks of choline a few years ago.

       

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A EURORDIS and NORD Member Organization

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