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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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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, October 15, 2008

A word of admiration from Maria to this great Community


WORKING TOGETHER, FISHING FOR ANSWERS

It amazes me how very driven this community is to find a cure. We have realized that this is probably the only real beam of hope we see that may lead us to a cure, and thus we somehow manage to muster up from who knows where energy and time. We have been screaming so much in the dark lost with no direction and with no hope for much too long. Now, we actually have a plan - a good one at that. It may just work... WE'RE NOT USED TO HAVING TANGIBLE HOPE, ARE WE???

I can appreciate that Arun, Ben, Richard, and my lady friend in the UK, and so many others are so very busy with their jobs, school, and medical conditions, and yet they are making time for the final stages of the anthology, such as the paintings, writing a preface, and the publishing process; making time for establishing a charity corporation in the UK with affiliations in the US and Australia; for arranging meet-up sites, and to help others write a cookbook and to post in our blogs, etc. – and the list goes on and on.

I know that we may be feeling stressed, perhaps even some anxiety, as we see this process shift from fantasy to reality. We are taking steps - one step at a time, and are carrying out a real action plan that is unfolding before our very eyes, and we are witnessing an organized effort from people throughout the world in this endeavor! We all know that as this phase is completed, we will then only be face with the new challenges of actually carrying out the fundraising projects throughout the world, no less. And we will persevere! As the saying goes, "Bravery is not the absence of fear, but what we do in the face of fear!"

We can make it happen, folks; and we are making it happen one step at a time! Yes, it feels like we're climbing Mt. Everest, but we're halfway there! We have already organized ourselves as a strong body of sufferers, we have participated in large numbers in a scientific questionnaire, and now the experts are conferring to draw up a more refined research survey as a result so that we may participate in this one as well.

We have also had participation from experts, particularly from Arun Nagrath, Dr. Detlef Werner, and now from Dr. Robin Lachmann who will soon answer our questions regarding TMAU. Folks, we have only accomplished all this in less than half a year! Our blog only went live on May 26, 2008. And the MSN Body Odor forum was revamped in less time than that, and the anthology has been in the works in even less time. This is only a reflection of the desperation and of the drive we feel to find answers, to find a real treatment plan, and to find a cure.

We need to give ourselves a well-deserved good pat on the back for a job well done, and to give each other a pep talk to keep up the momentum. We also need to extend our hands out to all sufferers to ask for additional assistance in these endeavors. We need everyone's contribution in this quest for a cure, and no one is insignificant here, we can all contribute in one way or another, for we are ALL looking for a cure!

Outstanding job everyone! We're a great people!!!

María

For additional information on the charity corporation being filed in the UK, see A charity corporation is being established in the UK for BO & Halitosis research

And for additional information on the anthology see Tell your BO experience : be a part of an anthology of short stories and poetry

Dr. Detlef Werner's paper in German: Yahoo Trimethylaminuria forum files

Dr. Detlef Werner's paper translated into English: TMAU Hints for a new therapeutic option with Desmopressin - translation into English

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