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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)

Tuesday, May 14, 2013

Responses MEBO informal Survey: Odor Conditions

Please participate in Survey below
Click on icon below for updated stats results.


Discussion

**PLEASE WRITE YOUR COMMENTS BELOW.
LET'S HAVE A DISCUSSION.
YOUR OPINION MATTERS**

Thanks to all who participated in this informal survey. It is intended to show Odegon what the needs of our community are, and as expected, it is very diverse. Some of us tend to forget that the vast majority of sufferers test negative for TMAU, and MEBO is committed to pursue answers to this undiagnosed group of sufferers. As Steve Rawlings, Director of Odegon tells me, this product will works well on some conditions and not as well on others. For example, it will do nothing for halitosis, unless using the product in a mask; and it may not make much of a difference if used under the arm when odor is emitted from the scalp, breath, chest, groin, etc. Each area would have to have the proper protection in order to control the odorous chemicals in that area, whenever possible, and it's not always possible.

Approximately 1/3 of the 30 participants of this survey said they suffer from Bromhidrosis, Hyperhidrosis and "Other", approximately 1/3 suffer from trimethylaminuria alone, and approximately 1/3 from a combination of TMAU and Halitosis. Only one person suffers solely from Halitosis, possibly because since the Odegon technology would not be helpful in controlling breath halitosis symptoms, other halitosis sufferers didn't participate in the survey.

An interesting note is how most sufferers of TMAU seem to have odor throughout the body, though some noted groin, axillae, or feet only. Perhaps as a TMAU sufferer manages to reduce odor with the TMAU odor-management protocol, only certain specific areas remain with some degree of odor. In this case, if it is the groin, underarm, feet, collar area, chest or back area that remain odorous, the Odegon patches or garments may help. They are hand or machine washable, and dry cleanable as well. In more extreme cases, perhaps one would need to change clothes in the middle of a workday or school day to another garment with the patch. It may work for some, but not for others, and only each sufferer can determine his or her own needs, which may not apply to other sufferers.

One thing I've learned from my years of working with this international community is that the causes and manifestations of our conditions vary from sufferer to sufferer, and in fact, vary from time to time in each sufferer. Therefore, each sufferer needs to pursue understanding through testing and becoming involved in research personally, or supporting research financially. All need to strive to become informed and knowledgeable to better determine what may work or not work for himself or herself. Each must become sophisticated in the decision making process to determine when and what special occasions requiring special measures.



María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
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