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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
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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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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, September 17, 2009

Topics discussed in the London body odor and halitosis meet-up: Research strategies

Many discussions regarding BO conditions took place in our annual Meet-Up at the Thames Festival, and I would like to share these with those who did not have the opportunity to attend. This particular post deals more with the research needs of our community. Some of the attendees are professionals while others are not, but all are sufferers who have put forth a keen effort at many levels through the years to try to make sense of our conditions.

...it would be helpful to address our condition...through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other...‘think out of the box’...As mentioned in my previous post, it is remarkable how many of us seem to have other similar medical conditions ranging from digestive problems, such as chronic abdominal bloating and irregular bowels, to skin problems, such as dermatitis, rashes, psoriasis, and eczema, while a significant amount of us also suffer from allergies, chemical sensitivities, autoimmune diseases including rheumatoid arthritis and lupus, and neurological conditions such as epilepsy ourselves or in our families.



We all found it to be very interesting that not everyone benefit from the same protocol, particularly the same diet. Some of us benefit tremendously by a low choline diet, while others are able to eat more choline as long as the diet would be generally low in protein. Others benefit from a low dairy diet, and still others from a low sugar/carb diet. And unfortunately, a few have to be in more than one of these diets, making their situation even more difficult.
This is the way our discussions went:

Once the compounds and genetic pathways are classified and linked, it is through this ‘link’ that we would best be able to determine what constitutes the various types of body odor...
As one of the members puts it, it would be helpful to address our condition from two main ‘focal points’, through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other. It is important to ‘think out of the box’ in these studies, because perhaps we may very well still be ‘missing it’ and have not yet fully identified the full picture of most of the different body odor conditions.


What are the logistic obstacles involved that prevent us from achieving this? Financial and even technological restrictions are the culprits. As Arun points out, we would need such a highly sophisticated and sensitive instrument that could detect, identify, and quantitatively measure the smallest compounds in our blood that could in theory be producing odor.

The reason emphasis is placed on the technique of analyzing the blood over urine, sweat, or breath, is to preserve the state of the compounds before they pass (or are filtered through or contaminated by) the sweat in the skin or through the breath’s exposure to higher oxygen or CO2 levels, which may potentially alter it in some way.

Once the serum compounds and genetic pathways are classified and linked, we would be best able to determine why some sufferers seem to manifest skin problems, allergies and chemical sensitivities, digestive problems, etc. It is through this 'link process' that we would be better able to determine what constitutes the various types of body odor, better identifying exactly what enzymes (as well as possibly other factors) are involved, and see what other secondary illnesses or conditions may be associated with the various pathways mutations. Somewhere in that link between the genetics and blood composition may lie the answer.

In order to carry out this research, we would just need a scientist who is interested in developing this type of very highly sensitive instrument, a geneticist who is interested in this field, and a benefactor who would be interested in supporting this effort for compassionate and lucrative reasons.

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