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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 29, 2019

Atmotube Esensor : right idea but tech not ready for FBO

Atmotube Esensor for detecting Volatile Organic Compounds

In the end the METABOLIC MALODOR community will need an ESENSOR to monitor their condition, as most cannot smell themselves (this seems to be typical for all forms of malodor).

It's unclear if the technology exists yet for a disorder such as Fecal Body Odor, or whether the will is not there (due to thinking there's no market).

So for now the Malodor community need to look around at what's available.

For Malodor disorders, an Esensor will likely need to be :
1. Very accurate
2. Detect low levels
3. Be handy and light (e.g. sensor for phone)
4. Inexpensive

Atmotube Sensor  
This new consumer Esensor looks like the right track.
It says it detects VOCs (but not exactly which ones other than a list of some).
It's relatively cheap.
But it's probably early days for this technology (?)

Would Atmotube do for Fecal Body Odor ?
Very likely not, as it's not probably telling you data on each VO.C
And probably won't include most VOCs that may cause FBO.
It seems more based on toxins found in urban air.

But it's inexpensive and the right track, so maybe people will want to experiment with it and encourage the company.

It seems to be an indiegogo project from 2018.

Possibly it's the nearest for the FBO market since the 'foodsniffer', but more appropriate a device.
Someday the market will realise what a huge market the 'malodor sensor' market is (even for the majority that do not smell), but for now we have to wait or try out what is available/

Atmotube website
Atmotube offer on New Atlas 

Does the future look good for a suitable Esensor for Malodor conditions ?
Yes. 

If anyone buys Atmotube you can let us know how it goes.
At this point, MEBO can't endorse AtmoTube.

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A EURORDIS and NORD Member Organization

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