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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

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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Blog Archive

by 25 march ... nih framework survey
have your say (anon welcome) ... link to nih survey

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

Friday, March 27, 2020

March's Mental Health Column: Coping with Coronavirus Pandemic

Click on icon for full paper
Greetings from Holland
Our MEBO Mental Health Director reaches out to us yet again to guide us in times of trouble, especially now during this worldwide crisis - the COVID19 Pandemic.

"It is my belief that even though this is a very difficult and trying situation for all, TMAU, malodor and PATM sufferers might already have certain coping skills, that can help us get through these difficult times...some of us have lived or are still living socially isolated lives...tried to avoid crowds of people social contacts and now everybody across the globe has to do this?" (Click on tulips picture above for full paper)

Wishing you much strength and health! You are in my thoughts and prayers.
Take care,              
Crissan
careformoc@gmail.com





We thank Crissan for her steadfast dedication to our community as she understands us, she gets us, and she uplifts us each step of the way throughout the years. Thank you Crissan!


María

Link to paper: https://drive.google.com/file/d/1C3BG12sVVqfbzhDImTzb8db8naP1g4cN/view?usp=sharing

Monday, March 16, 2020

USA : Job Accommodation Network

USA
Job Accommodation Network
Appears to act as a 'facilitator' employment-agency type organisation for people with disabilities

Link to site

Quotes from JAN website ...

JAN is funded by a contract from the U.S. Department of Labor, Office of Disability Employment Policy (ODEP) (#1605DC-17-C-0038).  Its development has been achieved through the collaborative efforts of ODEP, West Virginia University, and private industry throughout North America.
...

The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace.
...

JAN’s trusted consultants offer one-on-one guidance on workplace accommodations, the Americans with Disabilities Act (ADA) and related legislation, and self-employment and entrepreneurship options for people with disabilities. Assistance is available both over the phone and online. Those who can benefit from JAN’s services include private employers of all sizes, government agencies, employee representatives, and service providers, as well as people with disabilities and their families.
...

JAN represents the most comprehensive job accommodation resource available. From Fortune 500 companies to entrepreneurs, JAN has served customers across the United States and around the world for more than 35 years. Its consultants are thought leaders and innovators on disability employment issues, and all have earned at least one Master's degree in their specialized fields, ranging from rehabilitation counseling to education and engineering.
...

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A EURORDIS and NORD Member Organization

Sunday, March 15, 2020

MEBO Karen at FINDACURE Conference

MEBO Karen gives a 5 minute TMAU lecture
where ? FINDACURE Conference, London, Feb 2020


FINDACURE : a small UK charity that looks for ways to find cures for rare diseases.
It specifically looks to promote DRUG REPURPOSING.

A small USA Charity with similar aims is CURESWITHINREACH

DRUG-REPURPOSING
This is where old drugs are tried for rare disorders, to see if they have any benefit.
For TMAU, it would be used to see if any boost FMO3 function.

Benefits of drug-repo :
Drugs dont need to go through safety trials etc (already approved)
Usually out of patent
Simple to set up study (lab technician tests many drugs in a lab)

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A EURORDIS and NORD Member Organization