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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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Blog Archive

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

Tuesday, December 6, 2016

2nd UCL TMAU group session : official summary

2nd UCL TMAU group session
Summary of TMAU group session given by  psychologist Dr Monique Cloherty

On 22nd October 2016, the London NHS Adult Metabolism Unit (Charles Dent Metabolic Unit, UCL National Hospital for Neurology and Neurosurgery, London) held its second TMAU Group Meeting. This follows similar meetings this year at free healthcare Adult Metabolism Units in Dublin and NHS Birmingham, a breakthrough for the TMAU community.

Perhaps others can see if their regional Adult Metabolic Disorder Units might start TMAU group meetings.

Clinical Psychologist Dr Monique Cloherty hosted the session. The Charles Dent Metabolic Unit has kindly given this summary of the session  with Dr Cloherty for public release. :

Summary of TMAU session given by  psychologist Dr Monique Cloherty
The Charles Dent Metabolic Unit, London
22 Oct 2016


We got to know each other in small groups and shared our
experiences of TMAU.

We shared out stories of isolation. TMAU is very much a social
problem. A secret that we are constantly trying to hide. We told of
difficult events; name calling, bullying and not being believed that
have happened. People rarely spoke about a single event but a
sequence of events linked through time. We shared how TMAU made
us feel about ourselves, we can feel alone at times and paranoid.

We also heard about initiatives and steps that people have taken to
address the problems that TMAU can cause. We identified resources
and skills that made it possible:

Use of knowledge and being fearless
Assertiveness
Planning ahead
Having a supportive friend and family
Not putting up with it. Knowing which battles to fight, which
comments to let go.

Key messages to remember from the session were:

We are sharing this experience
Its been a relief to share it
We are not the only ones
We want to live a normal life
We are not going to be defeated
We want to be ‘in’ it.

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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

I know this question is geting bit boring now but I really would like to know if the uk researchers managed to get hold of the grants that they need yet or if there's anything us sufferers can do to speed things along?

Dec 18, 2016, 5:40:00 PM
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