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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, June 28, 2009

Upcoming events discussed in our Conference Calls


In today's conference call, we talked about:

1. Systemic hyperhidrosis and bromhidrosis: Compensatory sweating and odor after surgery affirms that the cause of this condition is of an internal, systemic source.

2. Compilation of data: As a community, our goal is to compile data of our symptoms and possible triggers to look for patterns as the initial step for formal scientific research. All are encouraged to participate in MeBO Research and Arun's upcoming projects to achieve this goal.

3. Our 2009 Thames Festival Meet-Up: to take place on Saturday, September 12th and Sunday, September 13th in London –
a. Passports: WE NEED TO GET OUR PASSPORTS NOW; in the U.S., it takes about 2 months to process for 1st time applications.
b. A meet-up is likened to a pilgrimage: What an emotionally healing experience previous meet-ups like this one have been in such a beautiful setting, as we experience a strong sense of ‘belonging’, as opposed to our usual sense of being an ‘outsider’ in our every day social experiences.

One of MeBO Research’s aims is to promote social awareness of systemic body odor amongst the scientific/medical communities, and in the public and political spheres.4. Raising social awareness: One of MeBO Research’s aims is to promote social awareness of systemic body odor amongst the scientific and medical communities, and in the public and political spheres. Some of the members of the call have expressed an interest in participating in political lobbying and media exposure under the MeBO umbrella as a non-profit organization.

5. Strive for independence in self-management of our odor: Like any other type of physically challenging condition, a sufferer needs to manage his/her condition in as independent manner as possible. In the case of a body odor condition, the sufferer need to be able to identify her specific type of body odor with a personal scientifically-based device that can detect and identify the primary volatile compounds causing the odor, to be able to correlate it with the specific triggers in the environment (foods, chemicals, etc), and thus, the sufferer can make better choices to manage her condition without having to ask anyone for help or having to ask others, “Do I smell?”

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