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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 map@meboresearch.org

MEBO Private Facebook Group
to join : go to
or contact
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

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Blog Archive

Sunday, March 24, 2019

USA Undiagnosed Diseases Network

Any American with an undiagnosed disorder can apply to the UNDIAGNOSED DISEASES NETWORK program. It's a number of top USA labs who will try to determine your condition through biochemical and genetic testing. It seems to have funding from the NIH. Includes Uni's such as Harvard.

Link to UNDIAGNED DISEASES NETWORK

How would this apply to Metabolic Malodor ?
in 2 possible ways :

1. If you have an undiagnosed metabolic malodor, or were negative for TMAU.
2. If you have TMAU but do not feel TMAU fully explains the smells.

Ideally someone from the community would get on the program and we could move further on than the only current possible diagnosis, TMAU.

Chance of getting accepted : probably very low, but maybe many requests will make them notice. 


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Thursday, March 21, 2019

Upcoming Conference in Netherlands and Belgium April 2019

In collaboration with a small group of TMAU sufferers, the VKS has organized the first official national conference for people dealing with odor conditions, including TMAU. Two guest speakers will give a presentation, Professor Ron Wevers, PhD., expert in the field of genetically determined odor conditions, Radboud UMC "Malodour", and a dietician (To be announced).


DATE: Saturday, April 13, 2019
TIME: 2:00 pm to 5:00 pm
LOCATION: Accommodatie Domstad, Koningsbergerstraat 9, 3531AJ Utrecht
LANGUAGE: The conference will be in Dutch
REGISTRATION:
People can sign up for the conference by sending me an email at crosalia26@gmail.com.
Enrollment has to be as soon as possible, before the end of this month (March).

PROGRAM:

2:00 pm - 2:20 pm: Walk-in with coffee and tea
2:20 pm - 2:30 pm: Welcome by Crissan Rosalia, Health Psychologist, MSc., MEBO Mental Health Director
2:30 pm - 3:30 pm: Presentation on "Malodour" by Professor Dr. Ron Weber, Radboud University Medical Center
3:30 pm - 4:00 pm: Presentation by dietitian (to be announced)
4:00 pm. - 4:30 pm: Discussion / Exchange experiences

LANGUAGE: Dutch
People can sign up for the conference by sending me an email at c.rosalia26@gmail.com
Enrollment has to be as soon as possible, before the end of this month (March).
We are most grateful to Crissan Rosalia for reaching out to experts representing our community in hopes to establish a coordinated effort to find answers, solutions, and some day, a cure.


Some information on Dr. Wevers' work:


"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper



Dr Wevers webpage

Media links on the story :
Gizmodo
Medical Xpress
Science Daily
Genengnews
UCLA press release


María
María de la Torre
Founder and Executive Director



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Tuesday, March 12, 2019

Online Live Group Session on Anxiety Report

Click on icon
Session report
On February 24, 2019, MEBO's Mental Health Director, Crissan Rosalia, Health Psychologist, MSc., conducted our first online group session on "Coping with Anxiety". There were approximately 15 English speaking participants from around the world, including the United States, Canada, Europe, Africa and the Philippines. It was uplifting to see the openness of many participants to talk openly and freely about their symptoms, social situations and tips with each other. Crissan provided us with excellent guidelines throughout the session to empower sufferers with better coping skills.

Crissan has provided us with a follow-up of the session write-up while protecting the confidentiality and privacy of all participants. This piece is a true depiction of our experience and it's an easy, free-flowing reading that captivates the reader throughout. It covers identifying levels and characteristics of anxiety, thoughts, vicious cycle, triggers, physical sensations, and action/behavior.

Questions discussed were the following,

  • What makes it difficult for you to manage your anxiety?
  • What are healthy ways to cope with anger, bitterness?
  • How does one deal with long-term rejection?
  • How does one prevent from becoming a recluse?

The second online group session will be held on Sunday, April 28, 2019 at the same venu, Zoom. More details will follow soon.

Crissan Rosalia's Bio
For the past year, with handouts and her Mental Health Monthly Column in this blog, Crissan has been providing us with greater understanding and direction on topics, such as,


Crissan has also participated in a TMAU raising awareness short documentary in a scientific show in the Netherlands, FOCUS on NRT.

We thank Crissan for her steadfast professional support, love and dedication.

María

María de la Torre
Founder and Executive Director

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



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at no extra cost to you.
MEBO gets small commission from Amazon.

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A EURORDIS and NORD Member Organization