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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

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or contact
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BO Sufferers Podcasts

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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
rareconnect.org TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, May 15, 2013

AGENDA FOR 4th ANNUAL MEBO CONFERENCE 2013

AGENDA FOR 4th ANNUAL
MEBO MEETUP AND CONFERENCE at Memphis
May 17th through 19th 2013


The conference part of our meetup in Memphis will be held at the Memphis Embassy Suites Presidential Suite on Saturday, on May 18th  following  This year’s conference will include the presentations noted below, and a great deal of time will be employed to group discussion on the material presented this year as well as of the three previous MEBO Annual Conferences listed below.  Please review some of the vast amount of information given out during these conferences, and formulate your questions and comments to enhance our group discussion.  Attendees of the conference are encouraged to bring literature and/or products for body odor and halitosis.

1.    Trimethylaminuria

a.    Presentation by Maria de la Torre, MEBO Founder and Director, of  the MEBO TMAU Test Results (Handouts on test results stats and TMAU odor-management protocol)
b.    Group discussion focused on following topics:
                                  i.    “Do I really have TMAU?”
                                 ii.    Is the TMAU odor-management protocol right for me? 
                                iii.    UK Medical Research Council Award for TMAU

2.    Halitosis: 

Discussion of paper, “How can we understand whether halitosis comes from mouth or breath?” written for our MEBO Conference by Dr. Murat Aydin, DDS, PhD, Doctor of Philosophy in Microbiology.  An analysis of,
a.    Oral Halitosis (oral malodor, oral and tongue odor)
b.    Breath Halitosis (comes from blood gases)

3.    Bromhidrosis/Hyperhidrosis:  

a.    Powerpoint presentation on Bromhidrosis, by MEBO’s Public Relations Director, Glenna Gonzalez, MBA
b.    Odegon products display: Military technology to tackle body odor.  Discussion on article published by UK News Mail Online, “M&S introduce the suit that can banish B.O. – using World War II gas mask technology.” Group discussion on personal needs, including what could or could not help in work/school environment. 

4.    Sneak preview of the film, “The Boy Who Smells Like Fish”:  

Our gratitude goes out to the Director, Analeine Cal y Mayor and the producers of Rhombus Media for allowing us to watch this movie at our conference.

5.    Other references for group discussion,


a.    the MEBO - Menssana Alveolar Breath Exploratory Study: Data-collection in Chicago, Miami, New York, and London phase completed. Data currently being analyzed by Dr. Michael Phillips, MD, PACP, and his team of experts.


c.    Webinars

d.    MEBO Publications :
                                  i.    : “Dimethylsulfidemia: the significance of dimethyl sulfide in extra-oral, blood borne halitosis.” British Dental Journal 2013.
                                 ii.    My body produces an offensively pungent chemical” Karen James, MEBO UK Community Outreach Director, Oxford Journals of the Oxford University Press, InnovAiT 2012; doi: 0.1093/innovait/ins093. 
                                iii.    Karen has also worked with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence, to publish 10 body odor related uncertainties / questions, now found in the Library of NHS UK database, about the effects of treatment for TMAU. 

PREVIOUS CONFERENCES PRESENTATIONS (2010-2013)

1.    Miami Beach Conference 2012

a.    Powerpoint Presentation, “Pharmacogenetics & Personalized Medicine.” Elizabeth Shephard, PhD, Professor of Molecular Biology, Vice Dean Education, Biosciences, Institute of Structural and Molecular Biology, Division of Biosciences,Darwin Building, UCL Genetics Institute, University College London, MEBO Research Scientific Advisor, Member of the MEBO Institutional Review Board.
b.    Powerpoint Presentation, “Dimethylsulfidemia:  its significance in extra-oral blood borne halitosis.”  Dr. Colin Harvey-Woodworth, BDS and
UK MEBO Research Scientific Director
.  See April 12, 2013 publication in the British Dental Journal of the Review: “Dimethylsulfidemia: the significance of dimethyl sulfide in extra-oral, blood borne halitosis.”
c.    Presentation by Irene Gabashvili, PhD, Founder of Aurametrix, MEBO Research Scientific Director, Member of the MEBO Institutional Review Board.
d.    Presentation, “Seeking Employment,” by Cheryl Fields, MEBO US Community Outreach Director, Member of the MEBO Institutional Review Board
e.    PowerPoint Presentation by Glenna Gonzalez, MBA, MEBO US Public Relations Director, Life Coach
f.     Statistic Report provided by Nigel Manning, Principal Clinical Scientist, Department Clinical Chemistry, Sheffield Children's Hospital, MEBO Research Scientific Advisor

                                  i.    TMAU test performed in the UK and TMAU diagnoses from 1997 to 2011
                                 ii.    Statistics TMAU Test results: Primary TMAU, Secondary TMAU, and normal results from 1997-2011

3.    Nashville Conference 2010

Discussion of Nigel Manning’s paper written for this conference, and discussion of other papers.

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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2 comments:

Anonymous said...

Food service, hospitality, bar tender, waitstaff, hostess, health care, cruise ships, day care centers, the list goes on...buisness owners will lose money and customers if their establishment smells bad...some people have a mild odor level and fuction fine...some have severe odor levels that are much more life crippling...we are not all buisness oriented we can't all get bachelors and masters degrees...etc...it is important to keep in mind that, and i speak from experience, as I learn how to decrease my odor levels all apects of life including
employment are easier to obtain...we need to remeber some people have body odors way more extreme than yours ay be, so getting back up may not be as easy for them.......some suffers are lucky to have mild odors, some suffers have extremly over powering odors.......

May 15, 2013, 9:40:00 PM
Maria de la Torre said...

I wish you would join us at the meetup. This meetup will have more group discussion than the previous ones, and we hope to have input from everyone present. There is a wealth of information in the 1,266 posts of the English MEBO Blog and 209 posts of the Spanish one, and in the webinars, powerpoint presentations and handouts experts have done specifically to benefit our community. We need to discuss this information, and see how it applies to the wide diversity of causes and symptoms of each persons halitosis and body odor. I have a feeling that the group discussions are going to be very interesting indeed. Hope you can attend!

May 15, 2013, 9:53:00 PM
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