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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, April 7, 2016

Telling physician patient's perspective

Golden Girls Episode
Telling physician patient's perspective

Frequently sufferers of uncontrollable breath and/or body odor get this same response from their physician. It is OK if doctors are not familiar with what could be causing this problem because the science is not available, and the patient would accept a sincere and compassionate response. "Compassionate" is the key word.


María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

3 comments:

Anonymous said...

I'M WONDERERING WHY WE HAVEN'T HEARD BACK FROM ANYONE ON HOW WELL THE RESEARCH ON TRIMETHYLAMINURIA IS GOING, I MEAN, ITS BEEN A WHILE SINCE SOMEONE HAS COME AND UPDATED US ON HOW EVERYTHING IS GOING. DOES IT STILL LOOKING PROMISING, OR DOES IT NOT, I MEAN WE AS SUFFERERS HAS THAT RIGHT TO KNOW WHATS GOING ON WITH THE MONEY THATS HAS BEEN GIVEN FOR THIS RESEARCH. I DON'T KNOW ABOUT ANYONE ELSE, BUT IT WOULD MAKE ME NOT WANT TO DONATE IF THEY CAN'T KEEP US UP TO DATE AND INFORMED..

Apr 25, 2016, 2:11:00 PM
Stephanie said...

I'm not sure which research you are asking about. The last I heard trinzyme research was at a stop due to no funding for the next phase of research.

Apr 27, 2016, 5:55:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

I wish we had more information about the TMAU therapeutic research in London, but the most updated information offered to the public is found on the UK Gateway to Research, provided by Research Councils UK, http://gtr.rcuk.ac.uk/project/772B5BB8-C185-455B-9AE2-C4BC7F8369DF

It states on the right hand column that this research was funded £360,684 from August 2013 through April 2016. The project is still active, but we have not heard of any additional funding. Hopefully, they will get some soon.

May 2, 2016, 2:24:00 PM
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