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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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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

Wednesday, November 30, 2011

TMAU DIET ADVICE for Lady with TMAU on TV

Note : Video is currently blocked in UK.
UK viewers will need to watch the whole programme here : Food Hospital





TMAU DIET

Our very own very brave, Ellie James, who lives in Bristol, England, did not receive her TMAU diagnosis until after having struggled with TMAU and diet uncertainties for 11 years. Our community embraces Ellie in profound gratitude for having come forward and doing this interview to raise awareness in all levels of society, including the international medical community, sufferers of body odor, and all persons interested in understanding what life is like as a body odor sufferer. Thank you, Ellie, this wonderful Channel 4 programme "The Food Hospital," and the experts in this video for providing such valuable information about nutrition and the dangers of a self-determined and self-imposed restricted diet many body odor sufferers desperately resort to in order to control one’s odor.

Our community embraces Ellie in profound gratitude for having come forward and doing this interview to raise awareness in all levels of society
As body odor sufferers, we have a series of hurtles of seemingly monumental obstacles we must build our strength up to face and overcome. Our first obstacle is to find the courage to get tested, and the second obstacle is to accomplish all the impediments that arise in the process of getting a TMAU test, i.e., physicians not having heard of this test and thus blocking the process. In some countries, it is either very expensive to get tested, or there is no opportunity at all to be tested for TMAU. And there are virtually no tests in existence for other forms of non-illness related systemic body odor conditions.

Whether a sufferer accomplishes getting tested or not, and even if one is “privileged” enough to get answers by being in the 20 to 30 percentile of the people who test positive for TMAU, we join Ellie in believing that our only available resource is to turn to the internet for diet guidance from other sufferers (non-experts). Sadly, we find ourselves entering the realm of seriously limited information, or blatant wrong information from non-experts, about, “how to control this odor condition and still remain healthy.” But unfortunately, MOST sufferers from around the world have no other recourse but this unprofessional guidance. Thank you Ellie for sharing this wealth of this information with all of us! If people like you chose to not share information as you have, we would be in a very hopeless state indeed.

Most body odor sufferers, TMAU positive and TMAU negative, throughout the world do not have the advantage of having at their disposal professional nutritional guidance to be able to determine what diet can control their particular odor while still allowing us to stay healthy. So the international medical community and sufferers alike, turn to the very few experts, such as those seen in this video, for guidance. In Ellie’s case, even after having had a positive diagnosis, she was fortunate enough to eventually receive the nutritional information she desperately needed from these experts to help her develop an effective, healthy diet that allows her to control her odor to a large extent.

This is precisely one of the reasons why MEBO Research came into existence – to become and intrument by which all sufferers, physicians, and nutritionists in all countries in the world may have access to this and other diagnostic tools, treatment options, and to raising awareness so that physicians may also be informed of the limited treatment plan available. We hope that this blog serves this purpose well.

However, even the very compassionate experts seen on this video and a few others around the world have been hoping for years to get large grant funding to be able to further research TMAU and other body odor conditions in order to best help us. This is MEBO's other primary purpose for existing - to assist in every way possible to support these experts in obtaining funds to initiate research into all areas of body odor conditions, treatment, and cure. Scientists in the UK and other countries in the world would love to receive the grants necessary to carry out significant research to study at a deeper scientific level all the causes of body odor conditions, including TMAU, to then be able to develop more effective and permanent treatment for these body odor conditions.

As the program points out, “Hormones, illness and diet can all determine our particular smell.” This means that much more in-depth research needs to be done to understand the true dynamics of hormones, the environment (microbiota), and illnesses in relation to the various body odor and systemic halitosis conditions. But we can't stop there, we also need to research effective treatment options specific to the various causes of body odor conditions.
Again, we thank Ellie for the love she has poured over our whole community of sufferers and their families by stepping up and proactively pursuing the possibility to be part of the solution!

María

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition
MEBO Research

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