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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, September 2, 2008

Take the Reigns (excerpts from my anthology essay)


Picture: My sister [on the right] and me 1970


One warm Saturday Floridian night, my husband and I picked up our 14 year-old son, Alberto, his girlfriend, Pía, and five of their friends from the movies in our SUV to take them to their respective homes. All was well in Alberto’s relatively short life as he was enjoying the beginning of his high school years with his many new friends and beautiful girlfriend of almost a year; little did he know that all this would soon be detoured as the old millennium faded into the new one.

All of a sudden, a strange odor filled the truck that alarmed my husband and me. There were no mangroves around this part of Miami, so why did it smell like the peculiar odor of decomposing death? Is there something rotting in this truck, I thought. But we never smelled it driving to the movie theater on our way to pick them up. Then again, was it a mangrove odor, or possibly a burnt rubber odor, though not quite, or perhaps some type of sulfur acne cream that any of the kids could be wearing? But why would a manufacturer produce such a horribly smelling product in this day and age?...

Later that night as we were getting ready for bed, I dared ask my husband what he thought was causing this odor in Alberto. He seemed fixated in simply trying to identify the odor, “It smells like feces, but I don’t think it’s coming from his butt. It’s coming from his mouth, how could that be? In fact, I think it smells of bile...”

In spite of him withdrawing more and more into his room, most of his high school friends strove to maintain their friendship with him; and to this day, they have continued coming around our house. Most of them have loved him very much, and have seemed to treat him as the ‘guru’ of the group. Every time they each had a problem, they would seek refuge in his smelly room as they offloaded their inner turmoil on him, and they somehow found comfort and guidance in his smelly words. My heart died a little each day as I feared he was gravely ill, and I hated myself for yet again being totally powerless to save the people I love most...

One year after my sister’s death: As these eight years of Alberto’s odor passed with no answers, I had only seen my son falling into a very profound depression, which was deeply reflected in his beautiful face and in his reclusive loneliness… I can’t give up, I will fight back, and I must keep searching…

http://groups.msn.com/BodyOdorSupport/remediessupport.msnw?action=get_message&mview=1&ID_Message=21453&all_topics=1

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