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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
rareconnect.org TMAU

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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)

Monday, May 4, 2009

Conference Call Topic: Being Social

In today’s conference call, we dealt mainly with the emotional consequences and coping mechanism of daily living with a body odor condition. Some of the emotional responses frequently expressed by body odor sufferers are the following:

1. A strong sense of pessimism;


2. Develop a perception that others are attempting to take away our humanity, our sense of self-worth through social rejection, sometimes in a very hateful manner;

3. Our capacity to love people and to establish relationships is diminished to a certain degree;

4. Social powers decrease at work, school, friendships, and even with family members who are non-sufferers

5. Our awry social development may very well manifest itself while we attempt to establish relationships with each other in this community, however being more aware of the impact of our common social experiences with this condition we can help each other other grow to become better social beings in spite of our past experiences.

We can’t focus on everything that surrounds us in life, so we have to choose what we want to focus on...Recommended coping mechanism within the community and outside:

1. Improve communication skills in our community by seeking to become involved in as many social opportunities as possible. This may be participating in "multi-dimensional" communications involving hearing and seeing each others' voice tonality and body language, as opposed to our customary one-dimensional communication tool of posting in a forum. The most ideal situation would be to participate in meet-ups, the seconds best situation would be participating in conference calls, and of course, continue to participate in the forums.

2. Change our focus to what’s really going on with people around us as opposed to self-centeredness in which we become the focus of our attention. Realize that people may be talking, laughing, and thinking about their own issues as opposed to about us at any given moment in time.

3. Eye contact: When we feel shame, we tend to avoid eye contact, thus sending a message that, “I don’t want to connect with you.” We need to change our social approach to having eye contact in an inviting manner, so that others may see our humanity.

4. Think positively: Avoid thinking in negative terms:
a. Negative: I hope I don’t stink today.
b. Positive: Today I will be stress-free and I will smell good as a result.

5. Strive to be independent of needing praise: Change from being an insecure person to a more independent one; and acquiring an ‘I don’t care’ attitude regarding the odor while in a social setting.

6. Strive to be a group of selfless people – focusing less on our individual selves and more on the big picture of where we would like our community to take us – toward physical and emotional healing

7. We chose what to focus on: We can’t focus on everything that surrounds us in life at all times, so we have to choose what we want to focus on, either on the negative or the positive. Which will it be?

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