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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 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)

Monday, August 12, 2013

Survey - Message from the TMAU.ORG.UK Management

TMAU.ORG.UK has been serving the TMAU community since 2009 with their website and forum, which includes inspirational stories, interviews with experts, press releases/interviews, videos, and general TMAU tips.

As a member of this group, I have received an email from The TMAU Forum Management notifying us of a survey sufferers who have tested positive for TMAU are invited to participate in. I have copied and pasted below the information The Management has sent me with the links exactly as they noted. All persons with TMAU are encouraged to assist in this survey.



Hi All,

Please see the below email from Min Li, MD, PhD
St.Paul's Hospital,Vancouver,B.C.

I would be grateful if all members could take a minute and respond directly
to either:

minli@hotmail.com or Dr. Ramesh Saeedi's rsaeedi@providencehealth.bc.ca





Dear TMAU website members,

We have previously described a patient with trimethylaminuria (TMAU) who
also has very high cholesterol level due to heterozygous familial
hypercholesterolemia (Journal of Canadian Medical Association Journal
2011;183:929-931). A CT angiogram (an x-ray of the heart vessels after
injection of dye in veins) preformed in this 71 year-old patient revealed
no evidence of hardening of arteries in her blood vessels. This was very
surprising in view of the fact that she was not treated (most patients with
this condition develop early heart disease). A recent paper published in
Nature (Nature 2011; 472:57-65) suggested that trimethylamine N oxide (TMO)
plays an important role in the development of heart and blood vessels
disease. Based on these observations, we think that individuals with TMAU
may be protected against heart disease because of decreased production of
TMO in this condition.

To test this idea, we need more information. Specifically, we would like to
get information regarding the frequency and severity of heart disease in
patients with TMAU. Could you kindly supply the following information?

• Have you ever been diagnosed with heart disease? If yes, at what age?
• Have your family members been diagnosed with heart disease? If yes, at
what age?
• Have you ever been diagnosed with high blood pressure, and diabetes
(elevated blood sugar)?
• Have you ever smoked?

This information is important for us to understand the role of TMO in the
development of heart and blood vessel disease. All the information gathered
will be confidential. No names will be published. Thank you for your help.

Sincerely,


Jiri Frohlich, MD, FRCPC
Min Li, MD, PhD
Ramesh Saeedi, MD, PhD

Healthy Heart Program, St. Paul's Hospital, Vancouver, BC, Canada
Department of Pathology and Laboratory Medicine, the University of British
Columbia, Vancouver, BC, Canada

--
Thanks, The Management

María


María de la Torre
Founder and Executive Director

  A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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