Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out
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

Scroll down and select country
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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

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)

Wednesday, January 16, 2013

UK meetup 16th March : York

UK Meetup
York
16 March 2013

A message from a UK meetup arranger to the community. Everyone welcome.

So we have decided to have another Easter meetup. This time it will be on the weekend prior to Easter Sunday because I know a lot of people have already made plans for that weekend. Also we are going to meet a bit later in the day this time because check in isn't until 3pm in most hotels and I know a few people are thinking of going clubbing later in the evening. So the plan is:            

Meetup at yates bar between 4-5pm (23/03/2013 (http://www.weareyates.co.uk/york). Its looks like one of the nicer Yates bars, big and open plan just how we like it ;-). Have a few drinks and a chat there and then go for dinner. Then I know a few people are planning to make a night of it, not mentioning any names (Claire and Jan). Obviously people are welcome to come and go as they please, everyone will be made to feel welcome. Jan promises to kiss all new arrivals a big kiss. 

The meetups are a great chance to get to know other people with malodour conditions, ask questions and compare protocols/symptoms. Probably more importantly, they give us a chance to relax and enjoy good company without needing to feel self conscious. 

I've had a look and accommodation in York, on the whole it's pretty expensive for that night, but there are a few relatively cheap places. As always book early, if you're unsure whether you're able to attend its still better to book earliy, Just make sure the hotel/B&B offers cancellation insurance when you do. I will be staying at http://www.moorgarthyork.co.uk/room.html. Its the cheapest ive seen so far at £35. There is also the http://www.wheatlandslodge.co.uk/index.php at £44 for the night. Prices started to get crazy after that but if you want some luxury try http://www.laterooms.com/en/k16308894_york-hotels.aspx#uvmdrq

As always if you have any question you can message me on Facebook, ajmcclay@hotmail.co.uk or text/phone on 07564352288.

Look forward to seeing you all there. 

2 comments:

Anonymous said...

This is good wish I could come and share the experience but am far in kenya it will give me a different experience all the best and share what is discussed

Jan 20, 2013, 3:51:00 AM
Anonymous said...

I have sent an email using the email address given as I wanted to know how new comers are able to recognise the Yates Wine Bar group, however, I've had no response. My mobile number is 07876 500520. If anyone can help I would appreciate it.

Mar 10, 2013, 3:20:00 AM
Post a Comment