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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)

Thursday, August 6, 2009

Annual UK Meetup London, Sept 12/13th 2009

Hi guys, I want to invite you to the annual UK Meetup, which has been arranged to coincide with the Thames Festival 2009, which is on that whole weekend.

Outdoors, at the downstairs cafe of the Guoman 'The Tower' Hotel, Tower Bridge, London at 12pm Sat 12th September and 12pm Sun 13th September.
We will meet for coffee outside The Tower Hotel, right next to Tower Bridge, London at 12pm Sat 12th September and 12pm Sun 13th September too. The event lasts the whole day (both days) but members can come and go as they see fit.

This is a social gathering for all people with odour conditions. Advice and stories are shared and is usually a good day out. It is running over two days. Although it is not an official meeting with an agenda, it is an opportunity to meet others and build networks.

London meet-up : are you going ?

I am expecting around 15-20 members in all, including 2 members from the U.S and 2 from Norway. There will of course be discussions about helpful products, testing, diet etc. But it will also be largely a social event to get to know each other so that we can be more effective and for Group support too.

In the evening, you will have a lot of fun. There will be fireworks on the river, floats, carnival, Afro-Carribean steel bands, barbecue, international food stalls etc etc. ENJOY!

http://www.thamesfestival.org/weekend/highlights/

For those Group members who are traveling from far, I would suggest you book your hotel ASAP. The one I am recommending is the Travelodge in Tower Bridge, London :-

E-mail address: ArunNagrath@hotmail.com
Phone (land line): +44 (0) 1375 484 269
Mobile 07753 492 759

N.B. - I will have my mobile with me the whole weekend and will be checking for texts frequently.

(Only dial the 0 digit if calling FROM the U.K, otherwise leave it out). If calling from the U.S or Canada then prefix the above with 011. If calling from elsewhere then prefix with 00

Please Note - Strictly no photography is allowed of other members although you may take photos or videos of me or Maria if strangely inclined!

Arun Nagrath

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