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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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

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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

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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

Wednesday, March 12, 2014

Message from Founder and Executive Director

MEBO RESEARCH FOUNDER
AND EXECUTIVE DIRECTOR

Many sufferers call the MEBO phone line or email me personally in hopes to receive expert consultation and advice. Please be informed that I am not an expert, and for this reason, I am not available or qualified to give one-on-one counseling to sufferers. This role or function was never my intention when I founded MEBO simply because I am not qualified to do so. As a complement to my Intro Letter post of April 10, 2008, I would like to clarify my position and role in MEBO Research as the Founder and Executive Director.

Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails.
As noted in my Intro Letter, I am a mother of a Primary TMAU sufferer who has responded very well to the TMAU odor-management protocol. It is precisely because of my son’s condition that I founded MEBO Research with the sole purpose of promoting research to find a better more reliable treatment, and ultimately a cure. There is no cure at the present time and experts do not foresee a cure in the near future. We can only hope for a better, more reliable treatment to come out of the research currently underway in the United Kingdom and the United States. In the meantime, since Secondary TMAU was not being tested in the US, I found it beneficial to start the MEBO TMAU Test Program.

Since I am not available or qualified to give one-on-one counseling to sufferers, and since MEBO consists of a fully volunteer staff of sufferers and family members, there are no experts available to offer telephone consultations or available to answer large volumes of emails. Therefore, MEBO has gone to great lengths to interviews experts, work with RareConnect to hold webinars given by experts, and to gather literature on Trimethylaminuria and other body and breath odor conditions found in professional journals to post about them in the MEBO Blogs.

In addition, I have put in place a secret, totally private online support group, which consists of a few hundred members that is thriving very well. No one outside the group can see participants’ names, usernames, or pseudonyms associated with MEBO or anything written in this site. In this group, there are sufferers who have many years of experience fine-tuning their respective odor-management techniques, who are very willing to give excellent testimonial to each other and to new members. The topics most discussed in this group are the expert-prescribed odor management protocol and recommendations, and how to face the challenges of school environment and the workplace among other topics. I’ll be happy to invite anyone interested to this group for help and guidance. If interested in being invited, please notify maria@meboresearch.org.

REFERENCES:

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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A EURORDIS and NORD Member Organization

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