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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
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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)

Saturday, October 17, 2009

Bloodborne body odor & halitosis : asparagus urine test experiment

It has been mentioned here before, that asparagus is known to make some people's urine smelly, but others not. However it is not widely known that there seems to be a 3rd category where the person is unable to smell smelly asparagus urine. Since it is a 'trivial' problem, probably not enough research has went into finding out all the categories and the reasons. But given the compounds thought likely to cause 'asparagusuria' (sulfides etc), it was thought it may be interesting to find out what the 'pattern' is amongst systemic body odor and halitosis readers may be. For instance, it may turn out to be a way of telling whether people are 'FMO3-vulnerable' or not. Or it may not.

Research into 'asparagusuria' has been very limited, and the few papers done can give conflicting outcomes. For the purpose of this post, it will be assumed that the work of Mitchell is the most convincing, since he has done the most extensive research.
Mitchell 2001 summary about asparagusuria
1987 study : Odorous urine following asparagus ingestion in man.

It appears that people may fall into the following categories :

excretor (of smelly asparagus urine) or non-excretor
and
perceiver (can smell smelly asparagus urine) or non-perceiver

So there are 4 categories people can fit into. For example, someone can have smelly asparagus urine and not perceive it, while someone else can have non-smelly urine and can perceive smelly urine. The excretion part is about whether the person has unmetabolized smelly asparagus compounds in their urine. The 'perceiver' part is about the persons abilty to smell such compounds in urine. Of a study Mitchell was involved in in 1987, of the 800 volunteers, about 43% were 'excretors', and a much smaller amount excretors of very 'potent' smelling urine.

Since smelly compounds are involved, it was thought it may be worth doing a 'snap' poll of our own urine after asparagus consumption, especially since many cannot smell themselves (non-perceivers). A poll is also set up for family/partners as an anecdotal experiment, although the whole experient has the possiblity of 'non-perceiver' over it, since we don't know now for sure if we couldn't smell it or it didn't smell. Not unless you get a known 'perceiver' to smell it !

And so, onto the rules of the study
Asparagus urine test :
eat at least 5 sticks of asparagus (in a meal will do)
sniff urine over the next 12 hours. Especially the next 'batch' of urine after asparagus consumption.

The polls can be read below

Bloodborne body odor : If someone else smelt your urine, could they smell anything ?

Bloodborne body odor : Did your urine smell after asparagus consumption ?

Bloodborne halitosis : If someone else smelt your urine, could they smell anything ?

Bloodborne halitosis : Did your urine smell after asparagus consumption ?

2 comments:

asparagus-friends.com said...

Very interesting poll, most publications say, that the urine of almost 50% does not smell

Feb 27, 2010, 12:45:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

Urea in urine is odorless, however bacteria usually increases the pH as they break down urea to ammonia. A diet high in citrus fruits, vegetables, or dairy products can increase your urine pH (alkaline). A diet high in meat products or cranberries can decrease your urine pH (more acidic).http://www.nlm.nih.gov/medlineplus/ency/article/003583.htm There are many factors that affect odor in the urine.

Feb 27, 2010, 1:33:00 PM
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