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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

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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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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

Monday, March 9, 2009

Future goals discussed in our Conference Call

In our Conference call yesterday, we discussed the goals and strategies MeBO Research we have already initiated since this non-profit limited by guarantee company was registered in England on February 5, 2009. We also discussed plan we would like to undertake in the near and distant future. As mentioned before, it is the long-term goal of MeBO Research to become a charity in the UK and to establish an affiliated non-profit company/charity in the US as well to be better equipped to fund raise for larger research grants since then all donations would be tax deductible by the donor.

mebo body odorThe new business discussed in the call is the activities MeBo has been currently involved in to pursue research. We have sent ‘cold call’ emails to experts such as medical doctors, scientists, labs, and universities to introduce ourselves and to promote discussion on the various body odor conditions.

All left feeling very hopeful and optimistic about the year ahead filled with great opportunities to intently pursue research into our body odor conditions.The topic of conversation of this three hour conference call was what should the group do to promote research. It is very difficult to answer this question because of the wide variety of symptoms experienced by members of our community. It is for this reason that Arun did his Body Odor Survey to which there was an overwhelming response of 98 participants. Arun is in the process of purchasing a database in connection to the forum he has also purchased for us for the next 10 years, to analyze all the data to determine the best research approach for each manifestation of this body odor condition.

We discussed the variety of symptoms different sufferers experience from generalized body odor to halitosis, bromhidrosis/hyperhidrosis, vaginal odor, and foot odor. We also discussed how different members respond better to some diets than others, and what works for one may not necessarily works for other. Some benefit more from a low choline diet, while others from a lacto-ovo vegetarian diet, or vegan diet, while others from a non-dairy diet, or low carbohydrate and low sweet diet. There is no one fix for everyone.

After much discussion that seemed to raise more questions than answers, we all left feeling very hopeful and optimistic about the year ahead filled with great opportunities to intently pursue our needs living with this condition, since we now have a new forum this community call home, and a new non-profit organization that we can hang our banner on as a united group, and with all the support and healing we have been extending each other in our conference calls and meet-ups.

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