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MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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 Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Thursday, July 19, 2012

EMAIL PROTEST CAMPAIGN TODAY

TODAY IS THE DAY OF OUR
EMAIL PROTEST CAMPAIGN

halitosis research
Please copy and paste the following and email it to the links below. You are invited to modify, add, or omit whatever you like, or you make just copy and paste. Please send an email to each link separately, in order to avoid going on the receiver's Spam folder.


I was extremely disappointed to learn that the grant application for research into the intestinal bacteria of TMAU (Trimethylaminuria) patients and patients with foul-odour-producing metabolic disorders was turned down by the Medical Research Council. This research could have led to the identification of the specific types of bacteria present in the guts of odour sufferers and to the possibility of using fecal bacteriotheraphy/human probiotic infusion as a treatment therapy.

TMAU and other foul-odour-producing disorders are incredibly distressing conditions and, for many, there are no truly effective treatments available. The number of sufferers is ever-increasing and the number of children being diagnosed is also increasing. I would like to urge you to reconsider this erroneous decision and to allow the specialists to research into potential cures and treatments for the condition of Trimethylaminuria as a matter of urgency.

Former campaigns had greater effect when several e-mails and letters were received simultaneously. Our community would be very grateful if you could support us in this venture,


With kindest regards,
[YOUR NAME]


linda.willmott@headoffice.mrc.ac.uk
corporate@headoffice.mrc.ac.uk
felicia.rodriguez@headoffice.mrc.ac.uk
GPSD@headoffice.mrc.ac.uk

GrantsPostAward@ssc.rcuk.ac.uk
grants@headoffice.mrc.ac.uk
GrantsMRC@ssc.rcuk.ac.uk
Claire.Wyllie@headoffice.mrc.ac.uk
Rebecca.Hodges@headoffice.mrc.ac.uk
amt@headoffice.mrc.ac.uk


For more information on the Raising Awareness Campaign, see posts.


THANKS TO ALL WHO PARTICIPATE
from around the world!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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A EURORDIS and NORD Member Organization

3 comments:

Tiago Lopes said...

Sent it to all of the e-mail addresses.

To all TMAU suffers around the world - we'll make it. Stay Strong!

Jul 19, 2012, 5:28:00 PM
Baguio said...

Done. Please note that one of the email addresses is duplicated ;-)

Kind Regards,


Baguio

Jul 19, 2012, 8:09:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

Thanks, Tiago and Baguio for your support. It is much appreciated. Together we can make things happen.

I removed the duplicate address posted in error. Thanks for pointing it out.

Jul 19, 2012, 8:15:00 PM
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