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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

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MEBO survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

Tuesday, September 16, 2008

My weekend at the London Meetup

Hi everyone I am back in the States. I had such a great time over the whole weekend, and the two days at the meet-up at the Thames Festival were great. I met 15 people there, 6 of whom had never attended a meet-up, and not one of us could smell each other. We met under the umbrella, it was easy to find each other, and we walked to the other side of the festival along side the Thames and sat outside surrounded by musicians performing and food stands all around selling foods of all kinds from around the world. We talked and got to know each other well very quickly – probably much faster than if we had not shared a common malady. I'll be writing many posts in the following days about all the very interesting things we talked about; but mostly we just enjoyed being normal and wandered around the festival taking it all in.

Then, we strolled along the riverfront as we saw the boats racing, the musicians playing their instruments, the vendors selling their arts and crafts and ethnic foods. We reached the London Eye where there was an amphitheater along side of it with live entertainment and great food and drink stands all around.

On the second day, we took a cruise on the Thames that left the hotel where we had gathered at one end of the festival, that took us all the way to the other end of the Festival. It was a beautiful, bright sunny day with a cool breeze that induced a serene sense of well-being. We saw thousands of people along the waterfront enjoying the festivities. Then we went to a pub on the upper deck of one of the ships that was docked on the river, and talked for what felt like a lifetime. We talked as if we had been life-long friends who shared our deepest thoughts knowing they would all be understood by everyone.

We walked clear across to the London Eye again, got our dinner and drink, threw a blanket on the green lawn and listened to the sounds of the music from the amphitheater and the bustle of the people all around as we watched the sunset. We enjoyed the show under the stars until it was time to go.

Sadly, it is now over. We can only look forward to the next time when we’ll meet the same faces again and hopefully many new ones.

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