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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

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)

Thursday, March 22, 2012

TMAU audio story on BBC World Service and PRI stations

tmau story on bbc world service and pri
TMAU story on theworld.org 
Trimethylaminuria audio story on the world.org website
To be aired on BBC World Service and PRI
Scheduled for BBC World Service 28 March 12

Features owner of tmau.org.uk and FMO researchers Professors Ian Phillips and Elizabeth Shephard

Link to audio : TMAU story on theworld.org website

Thanks to the bravery of the owner of tmau.org.uk forum and to the kindness of Professors Ian Phillips and Elizabeth Shephard, a journalist, Ari Daniel Shapiro, has been able to compile a short but interesting audio program on a personal TMAU story for the public service website, 'theworld.org'. The program will be aired on the BBC World Service sometime on the 28th March, and presumably on PBS too, as they pool certain stories.

Our special thanks go to the owner of the forum tmau.org.uk who does so much on behalf of our community, and who has bravely volunteered for this story, which will result in more awareness of TMAU and the concept of systemic body odors/halitosis.

Please note on the 'theworld.org' website you can hear 2 audio programs. The official article itself, and further down an audio article on 'behind the story'.





About Dr. Ian Phillips,

We read in the Queen Mary University of London Public Radio International news about Professor Ian Phillips being a co-discoverer of the TMAU gene, and his frustration with it still not leading to a solution for patients,


Genetic testing opens doors - but doesn't always lead to solutions
Public Radio International

School of Biological and Chemical Sciences: Professor Ian Philips

Genetic testing opens doors -- but doesn't always lead to solutions

Public Radio International
Professor Ian Phillips is a co-discoverer of the TMAU gene, a disorder in which people are unable to complete the metabolism of a small molecule called trimethylamine. While most people break down trimethylamine in the liver, people with TMAU excrete the molecule in their urine, breath, and sweat, often resulting in a fish odour. In an article on sufferer Grahame Lancaster, Professor Phillips comments that he can’t convince funding agencies to invest in the research needed to develop a cure. “It’s frustrating because, having identified the genetic basis of the disease, we are no longer able to follow that up in any meaningful way that would be of use for the patients,” he says.
http://www.qmul.ac.uk/media/qmnews/items/71400.html

related links
tmau.org.uk forum
TMAU story on PBS NOVA website
TMAU audio and text on theworld.org website

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