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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

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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

Friday, December 26, 2008

Things are changing, by Cabel Hall



Things are changing in our lives and in our community. Look at all of the great things that are happening around here lately. It's amazing to see. It fills me with great hope for the future.

What is different now than before?

Well, it's not just that we are finally communicating with each other. Although we are communicating now more than ever, we have always had phones and email addresses and cars to go to meet ups.

No. I see the change happening within ourselves.

I see it when a new member comes in our group and this person is flooded with emails. I hear it when one of the "old timers" come on the conference calls for the first time and it is like talking to an old friend whose words have been with you for ages.

I see it in Maria who sacrifices much of her time to love us and I see it in Arun when he gets more and more assurance that he will finally be able to study this disorder when in the past he was hindered.

We are finally as a community thinking about one another before we think about ourselves. We are finally becoming friends...and friends hate to see each other in pain. We always want to help our friends.

Think about how far we have come in a year! Think about where we will be in 3 years from now.

Let me be very serious with all of you:

We will not have a cure unless we know how many of us there are in this world and what our symptoms are.

Treat it as a mission...treat it as your life's mission to find all of us that you can. Treat it as a mission to be there in the depths of despair with a fellow sufferer. They need you, and you need them.

I think about how far we have come and I think about how far we need to go. There are still those of us out there on the brink of suicide...there are some of us who just need someone to talk to who can FINALLY and TRULY understand what they are going through.

I see so much fear in us but I also see love...it's just been buried under a mountain of insults and tears. It shouldn't sit well with any of us here that there are people like us who are languishing in fear and depression. It actually helps us when we help other people.

I am always amazed at how love can change us. It helps the lover and the loved. I am always amazed at how love can drive away fear.

Cabel From an MSN forum post

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