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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

Monday, August 5, 2013

A message from Karen regarding Trinzyme

The following is a message from MEBO Research helper Karen James about the Trinzyme research project and fundraising :

Thank you to those people who came forwards to present fundraising ideas for the MEBO for Trinzyme Research Project which will hopefully culminate in the development of an effective therapeutic for TMAU. The £358K Medical Research Council grant will cover the initial stages of research, but we anticipate that research will need to be much more extensive than the grant allows. The scientists involved (including UCL’s Dr.Liz Shephard) want to avoid sponsorship by profit-oriented pharmaceutical companies so that we can keep the cost of the therapeutic low enough for odour sufferers. Therefore, the more money we donate now, the more likely it is that the eventual therapeutic will be marketed at an affordable price.

This truly unique study may just lead to a TREATMENT for various malodor conditions, not just diagnosis, theory, or fact-finding! That is what makes this endeavor so special -- and why it has become an intense 'MEBO Focus.'

BUT WE CANNOT DO IT ALONE, WE NEED YOUR HELP!

We now have some interesting ideas to work on. However, discussions with other sufferers have highlighted the odour sufferer’s overwhelming concern for his/her anonymity/invisibility/non-traceability. If we were raising money for cancer research, everybody would wear a T-shirt proudly stating that fact and then take part in a sponsored event such as a bike ride or run, or even try crowd-funding. Unfortunately, the social stigma attached to our conditions means that people are unwilling to raise funds publicly, and some may even be reluctant to donate via Paypal for fear of being associated with ‘the odour cause’ (we’ve seen similar problems when people have been asked to sign a petition).

Although this is a frustrating situation, we are looking for ways to overcome it. Most importantly, we need to be sure that any fundraising project we undertake will generate an adequate amount of money to balance the time and effort put into it; obviously all of us are volunteers and have to prioritise work and family commitments. So, though some of our ideas are promising and fun and can increase our community’s cohesion (online magazine, E-bay page, fundraising club night, online auction, raffle), they may not be immediately lucrative. Realistically, what we need RIGHT NOW is to raise at least £1000 before Christmas 2013 to show the UK’s Medical Research Council that we are a united, proactive community committed to finding a cure. This responsibility should not fall to a minority: every odour sufferer has the power to generate enthusiasm for the fundraising project by ‘spreading the word’ in a positive fashion. You may not be able to donate personally (financial hardship comes hand in hand with the under-employment of our community), but you can inform others about the project and incite them to support it. Any one of us could ask our relations to donate to the project in place of giving us a birthday or Christmas gift, for example, and any one of us could send this link to friends and fellow sufferers:

http://www.meboblog.com/2013/06/details-of-uk-medical-research-council.html



A EURORDIS and NORD Member Organization

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