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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

Tuesday, July 15, 2008

Mitchell/Smith TMAU 2001 paper : Their treatment advice both for then and in the future

The diagnosis of 'TMAU' was first recorded around 1970, and over the last 38 years it is unclear if there is much research attention either in TMAU or the enzyme involved, the Flavin Mono-Oxygenase enzymes (of which FMO3 is by far the most abundant and seemingly most important in humans). FMO are perceived as not having a majorly vital role in humans, and the sense is that few researchers are researching TMAU or the FMO enzymes, hence so few research papers have been published on the subject as well.

This is a well-known paper from 2001, written by 2 of the few researchers in the UK, Dr Steven Mitchell and R. L. Smith. For this post, we quote their long-term ideas as to solutions for TMAU, probably the ultimate goal being gene therapy.

It is unclear if gene therapy is possible today for TMAU. For instance, if it's more to do with no perceived need for it in terms of numbers of sufferers or the perceived seriousness of the problem by the medical establishment, or the cost, or practicalities (such as length of the treatment effect or effectiveness).

As to the future, one may envisage some new approach to treating or managing the condition quite apart from the obvious one of gene therapy with replacement of the human gene for FMO3. Alternative approaches might embrace the following: use of gut absorbents, such as charcoal or ion-exchange resins; modify the gut flora to reduce the bacterial species responsible for the conversion of precursors to trimethylamine; incorporate micro-organisms "engineered" with human FMO3 into the gut flora, to oxidize any trimethylamine released to its non-odorous N-oxide; provide riboflavin supplements, a precursor of the FAD cofactor for flavin monooxygenase function, in an attempt to maximize any residual activity; and finally, from the cosmetic point of view, the development of "malodor suppressants" in hygiene products to disguise the offensive smell of trimethylamine.


http://dmd.aspetjournals.org/cgi/content/full/29/4/517#SEC10

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