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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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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
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NORD Member Organization
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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, October 30, 2019

Prof Shephard London TMAU meeting 19/10/19 : update and summary

Long-time FMO3/TMAU researcher, Dr Elizabeth Shephard, hosted a TMAU community discussion on 19 Oct 2019 in London.

Here is the approved version of the meeting summary :

Meeting with Dr, Azara Janmohamed and Professors Elizabeth A. Shephard, and Ian R. Phillips
19.10.19. at St Mary’s Hospital.

We discussed:

 The issue of disability rights for odour sufferers, including those odour sufferers without
diagnoses. The goal is to acquire disability status for all odour-producing disorders. The
starting point to achieve this is an application to the Halley Stewart
Trust http://www.sirhalleystewart.org.uk/what-we-do/what-we-fund/ .
If successful, the Trust will fund a post for a research associate who will conduct interviews/written surveys with the community. With quantitative evidence of discrimination in the workplace/social inequality etc, the backing of Halley Stewart Trust, and support from UCL, we hope to establish an All Party Parliamentary Group to represent TMAU/metabolic odour disorders and effect change via MPs. The outcome of this application will be known only in about 5 months time.

 The possibility of liaising with other researchers to talk about their findings on volatiles other
than TMA; of exploring a new test; of discussing possibilities for blood or urine tests. Test
accuracy should be the focus of any test procedure.

 The idea of producing a leaflet specifically for patients to take to GP consultations. Liz
Shephard suggested brief info/bullet points that are informative but brief. The draft
leaflet would be shown to a group of clinicians to ensure they felt it contained sufficient
informative information. The final leaflet would then be prepared.

 The problematic lack of communication between the different clinical specialities involved in
managing metabolic odour disorders (eg. Endocrinology is just one department). The lack
of communication between specialities impedes progress.

 The idea of investigating the relationship between stress and odour, but this would be
difficult because it would be unethical to deliberately cause psychological stress to the
patient.

 The idea of making a video, using actors, to recreate a scenario of odour discrimination.
It was decided that:

 The ‘fish odour’ misnomer should be requested to be removed from the NHS website.

 A list of consultants with experience of working with patients with TMAU should be collated

A summation may be, that a grant request to hire a researcher to gather evidence testimonials of TMAU has been put forward to the Sir Halley Stewart Trust. The request will be considered around February 2020.

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