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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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 Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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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