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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Sunday, March 27, 2011

International support needed for UK TMAU sufferer's Raising Awareness Campaign, Part 1

Today is the last day we, as an international community, can unite with the London TMAU sufferers spearheaded by Karen James, who met on Friday 18th March to write a brief testimonial asking the UK Medical Research Council, General Medical Council, British Medical Association, Royal College Physicians, and more to simply Raise Awareness. You can find ideas of what to write about in your testimonial from the thread (pages 1 and 2) started by the group leader, malory, in the Body Odor Support Forum.

Our community is so very much stuck in a loop that has become such a monumental obstacle to break, and here is a 'loop' that we seem to be 'stuck' in, and anything you write that can help break this loop would be a great accomplishment.

Little is known in the medical community about BO conditions, including TMAU, due to lack of funding for research

doctors dismiss us as delusional without pursuing tests (only TMAU test exists), because they are not informed about uncontrollable body odor conditions not related to diseases, intermittent strong body odor conditions, and how only a certain percentage of the population detects the odor and react strongly in an aggressive manner against the sufferer

only very few sufferer find ways on their own to test (only TMAU test available in few places in the world and is costly). Persons suffering from body odor conditions that test negative for TMAU have no other test to turn to for answers because they have not been designed due to lack of funding for research

little is documented on TMAU and other BO conditions

companies don’t want to invest in researching and developing devices and treatment options for our community without more data that justifies the expensive research regulated by government agencies

brings us back to the beginning of this cycle…

We need to let them know that we exist in greater numbers than they think, except that we are "under-researched" and "under-tested."

Everyone is invited to copy and paste anything said in the Body Odor Support forum and in MEBO's website and/or Blog to write to these organizations. All we have to do is to send it to malory today, and she'll submit it as a group effort. This is our opportunity to break this loop. Let's make our presence felt!


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