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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

Scroll down and select country
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)

Monday, February 24, 2014

How to control body & breath odor in 2014?

Not everyone has the same cause of BO/BB, so the treatment to control odor is not always the same for everyone. Not everyone has TMAU, and some are more concerned with other types of FMO3 body odor also resulting in halitosis (bad breath), generalized body odor, vaginal odor, and/or bromhidrosis (underarm, external groin area, feet). Some of the causes of breath and body odor may be localized, like the dorsal tongue, tonsillitis, tonsilloliths, or bacteria on the feet, for example, these are things that your dentist, podiatrist, gynecologist, and/or medical doctor can help with.

However, most difficult-to-control odor comes from within. It usually originates in the intestinal flora. Some of the metabolic pathways (FMO3 and others) that could be deficient work with, but are not limited to, the metabolism of TMA, sulfur (hydrogen sulfide),
Image Aurametrix
(click on picture)
volatile fatty acids (scroll down to see all posts on short chair fatty acids), alcohols, auromatic ring compounds, sugars, dairy and others. See medical paper about the emerging role of H2S in the colon - 2003 paper, "Emerging role of hydrogen sulfide in colonic physiology and pathophysiology" suggesting H2S as human "gasotransitter." Unfortunately, there are limited tests available, such as the blood test for diabetes and the TMAU test. In addition, in some cases, the sufferer's metabolism may not be working well at metabolizing to a non-odorous state certain odorous chemicals that we get from food and drugs, see post “FMO3 Odor (not necessarily TMAU)." When we mention “drugs” we are referring to some (not all) prescription medications, over-the-counter medications, alcohol, marijuana, and street drugs. Also see PowerPoint presentation made for MEBO by Dr. Elizabeth Shephard, who is currently undergoing government funded research for a therapeutic for TMAU odor, "Pharmacogenetics & Personalized Medicine," and "FMO3 - a protein that can multi-task."

Your gastroenterologist can help look for digestive disorders that may be producing odor, such as H pylori or GERD, for example. Unfortunately, the existence of others test for odor conditions are unknown to our community. This is why the MEBO community around the world work so hard to pursue research, and the raising awareness campaign is very much a part of this pursuit.

RE DIET: Aside from the diabetic diet and diets recommended by gastroenterologists for digestive health, there really isn't any other diet published in professional journals specifically for odor conditions, other than the low choline diet for TMAU sufferers. Coincidentally, the low choline diet is also somewhat low in proteins and sulfur, so this diet also may help those sufferers whose gut flora may be producing too much odorous chemicals from these food sources or from medications. As we know, the human body needs protein, choline, fats (the good kind), and carbs (as opposed to simple sugars). Even if an attempt is made to completely eliminate any of these in everyday diet, eventually our bodies will scream out with strong, uncontrollable hunger urges for these foods; otherwise, we will become very ill and potentially die. So, the solution to successfully stay on a diet as a lifestyle change, food from these food groups need to be consumed. Therefore, in order to control odor, each sufferer would need to decrease the amount of the foods that produce body/breath odors while trying to consume food that keep us healthy and odor-free.

DIET:


HALITOSIS (BAD BREATH)


BROMHIDROSIS


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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A EURORDIS and NORD Member Organization

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