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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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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

Thursday, February 19, 2009

What should be done with the personal donations to MeBO ?

These are some provisional ideas:

Proposed methods of raising funds for Mebo Research :

1 .corporations/businesses/organisations/benefactors
2. personal donations. Expected to be much lower, but sufferers have a right to be able to donate. At the start, this source would likely be 100% of the income source.

Primary Aims :

To upkeep MeBO Research as cost-effectively as possible
To promote awareness of all systemic body odors and halitosis (e.g. get politicians involved)
To promote and/or conduct research into systemic body odor and halitosis
To get metabolic body odors recognised as a disability

With the arrival of MeBO Research, our pre-charity company created for the main purpose of researching and raising awareness about systemic body odor and halitosis, hopefully including external body odor and local halitosis (but systemic is the priority), it is envisaged there will be 2 forms of income: one, in the long-term, is from philanthropists, corporations, private businesses, and government agencies; and the other is from personal private donations. The main aim is to get contributions from commercial groups and government agencies so that work can start on a body odor and halitosis research center and clinic(virtual or not), and other projects.

mebo research into body odor and bad breath and odor and sweating The question arises as to what to do with the personal donations. Personal donations will likely be much smaller than from commercial groups and government agencies, but will likely be the initial only source of income. Nonetheless, it is hoped to put this fund to immediate good use for the benefit of our body odor and halitosis community. The obvious priority would be the minimal upkeep of MeBO Research to enhance our ability to further this cause, but it is hoped to also make some instant use of the money in ways which will help the community to find out what is wrong (diagnosis) and to encourage outside help (raise awareness).

One idea is to do small anecdotal studies to try to identify a pattern into systemic body odors. An example would be a leaky gut study, where members of the forum are offered the leaky gut test funded by MeBO. This study would not tell us anything conclusive, but if those that participate have leaky gut, it may tell us it could be a factor. Another example is B vitamin status. Many B vitamins are produced by a good gut flora. B vitamins are involved in many enzyme functions (often being a cofactor). If there was a vitamin deficiency involved, it would likely be a B vitamin. These amateur studies are far from ideal, but may tell us something, and are probably more enlightening than where we currently are. These small studies may also act as a focus and a template as to what the group can achieve in the future as well.

These are currently just opening suggestions, and it would be interesting to see what other ideas people have. The premise being that any income in the first few months will likely be from personal donations, so our challenge will be trying to make best use of these funds in an inspiring and hopefully most meaningful and efficient manner. Of course, the upkeep of the pre-charity is the priority, in an effort to prolong its life to further optimally serve this community, and the disbursement of funds will be as transparent to the community as possible.

Possible areas of speculative testing with personal donation money:

genetics : DNA tests. FMO3 testing. Detoxigenomic test
vitamin status : probably B vitamins mostly
mineral status : Magnesium ?
dysbiosis tests : candida, parasites, etc.
leaky gut testing
Trimethylaminuria testing
Malodorous Volatile Organic Compound testing

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