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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, May 7, 2009

Anthology update #5


I apologize for the lateness of posting the final draft of the anthology, because of computer problems. It will be posted no later than Saturday May 23, 2009 and submitted to our first publishing company no later than Saturday May 30.

To the new members joining the group since January
and who have not read this and the following 2 paragraphs I posted on the General Board, welcome to the group! My name is Rich (or Richard). I am the editor of an anthology book that the group is currently working on. I’ve been away from the board since January. The book consists ff essays, poems, short fiction, certain posted messages that had been chosen from the board, etc. I might be contacting some of you soon to ask for your permission to place any of your posted messages into the anthology.

Please don’t feel intimidated and think that your writing is not good enough to put into our book. Any mistakes will be corrected. We are all amateurs here; none of us have been published yet.

If you want to find out whether this is something you’d be interested in participating in, please contact me at richardrcook2@aol.com. Also, send your work that you wish to be included in the anthology to that email address. New deadline: Friday May, 22, 2009. Let me know if you think you might be a little late.

The following paragraph was taken from the last update posted in January; I want to remind everyone of how we plan to get our book published.

I’ll submit our manuscript to several regular publishing companies first: the ones that don’t require a fee to publish our book. I should hear from our first publishing company 2-4 weeks after they receive our work. If we are rejected by them, I will send our book to the next one until we have exhausted all of our efforts to get it published for free. At that time, we would have to submit the manuscript to a vanity publishing company: one that requires a fee for publication. In this case, we would have to raise anywhere from $500.00 to $800.00 to get our book published. Details on how we can all donate whatever we can will be included in a future update, if necessary. Again, all of this will take place only if we are rejected by all of the free publishing companies we can contact. One way or another, our book will be published.

If you have any questions, please post them on this board. I will answer them as best I can and post the answers. If you prefer, you can also email me your questions.

I need for everyone to keep your fingers and eyes crossed that we won’t have to pay to get our book published. It wouldn’t hurt to cross your toes, too. Or would it?

Rich

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