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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
TMAU UP Podcasts

Videos : TMAU stories

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

Tuesday, February 19, 2019

London meetup 2nd March

MEBO's Karen has this message ...

SATURDAY 2ND MARCH
from 2pm
MEET UP AT
TATE MODERN, LONDON

It's time for another meet up! Anybody affected by any form of body/breath odour is welcome to come. This also includes relations/loved ones of odour sufferers. The more, the merrier!
Everyone is welcome. You can have fun and socialise normally in a relaxed environment, you can exchange ideas, you can rant and express how you really feel, or you can discuss ideas about improving our situation by contacting NHS /MPs etc. It's up to you.

Venue:
Tate Modern
Bankside
London SE1 9TG
https://www.tate.org.uk/visit/tate-modern

For details contact :
karen.james@meboresearch.org


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A EURORDIS and NORD Member Organization

Tuesday, February 12, 2019

2 UK Gov replies about TMAU to 2 MP's

2 UK residents wrote their MPs to ask them about TMAU.
Both MPs wrote questions to the Health Minister.

Here are the replies :

5feb19
To ask the Secretary of State for Health and Social Care, what steps the Government is taking to address the need for research into Trimethylaminuria; and if he will make a statement.

Reply :
Caroline Dinenage Minister of State (Department of Health and Social Care)

The Government supports research into common and rare diseases through the Department funded National Institute for Health Research (NIHR) in England. The NIHR welcomes funding applications for research into any aspect of human health, including Trimethylaminuria. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

The Government also supports research into rare diseases through the Medical Research Council, funded by the Department for Business, Energy and Industrial Strategy.

Full info


6feb19
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of funding for research into methods for (a) treating and (b) curing Trimethylaminuria.

Reply :
Caroline Dinenage Minister of State (Department of Health and Social Care)

The Government supports research into common and rare diseases through the Department funded National Institute for Health Research (NIHR) in England. In 2017/18 the NIHR funded one research study into the trimethylaminuria disease which took place at the NIHR Guy’s and St Thomas’ Biomedical Research Centre and NIHR Guy’s and St Thomas’ Clinical Research Facility. The study investigated the feasibility of a novel assessment tool to measure the treatment efficacy in patients suffering from Trimethylaminuria. The study ran for nine months and finished in February 2018.

The Government also supports research into rare diseases through the Medical Research Council (MRC), funded by the Department for Business, Energy and Industrial Strategy. An MRC award of £361,000 from 2013 to 2016 supported researchers at University College London in testing a new therapy to be used for the treatment of trimethylaminuria. Further information on the project, including publications outlining the results can be found at the following link:

https://gtr.ukri.org/projects?ref=MR%2FK015494%2F1

Rare diseases patients also benefit from the pioneering research under the 100,000 Genomes Project. As of October 2018, over 3,000 researchers in 387 United Kingdom and international institutions were part of Genomics England’s Clinical Interpretation Partnership, which have been set up to improve understanding of genomic medicine and its application to healthcare; improve understanding of diseases; and lead the way to developing new diagnostics and treatments.

Full Info


Write Politicians about TMAU
Writing to Politicians is a major way to influence change to TMAU in the Health System
Politicans put pressure on the Government and Health agencies to affect change. Without that it is unlikely there will be any progress for TMAU or Metabolic Malodor Syndromes.

A suggestion would be to write your representative about TMAU.
They will probably send a question to the Health Dept Head.
A great way to get TMAU on the radar at the top.

Petitions

UK : Ask UK Residents to sign the UK Petition
Petition to Gov about TMAU 

International TMAU Petition
Change.org TMAU Petition

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A EURORDIS and NORD Member Organization

Saturday, February 9, 2019

Crissan's Mental Health Column: Resilience

Click to read article




FEBRUARY 2019

MEBO Mental Health Monthly Column
MEBO Mental Health Director
RESILIENCE
Action plan

THE STRONGEST
PEOPLE ARE NOT
THOSE WHO SHOW
STRENGTH IN FRONT
OF US BUT THOSE WHO
WIN BATTLES WE
KNOW NOTHING
ABOUT
In her December Mental Health Column post, Crissan focused on coping with the holidays and offers an action plan for stress management. Now in her February Mental Health Column post, she addresses misconceptions about resilience, the different types of resilience, such as natural, adaptive and restored resilience. She points out the effects stress and trauma tend to have on resilience over time, and elaborates on the concept of Locus of control, differentiating between internal and external locus of control. Two pages of this paper expounds indepth discussion on how to increase resilience, with step by step methods of how to develop it.


Resilience is not a trait, but rather a set of skills that can be developed with practice. Malodor and PATM patients can learn to be resilient in order to deal with the hardships they encounter on a daily bases. Sometimes this can come easy, other times it can be difficult, but with training it can definitely be attainable.

The love and care with which Crissan takes her time to write these articles for us never ceases to amaze me. She does so with such careful thought to make sure we get it right. We can freely make use of the valuable tools with which she provides us in order to attain the wherewithal to improve our lives. She gives her heart and soul to lift up our community so that each can find happiness and peace. Thank you for this, Crissan!


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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A EURORDIS and NORD Member Organization