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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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

Monday, September 12, 2011

A word from Karen James, our "ambassador" in morning


It has been a pleasure and an inspiration working with Karen James, as she is truly a great "ambassador" for our international community. Karen spearheaded the mail/email 'Raising Awareness Campaign UK General Medical Council (GMC) and others'' in March 2011, and has been relentlessly following up with emails to the proper authorities until she has managed to get a few very important steps accomplished through GMC. These accomplishments will be highlighted in future posts as publications are being made by the Royal College of General Practitioners (RCGP).

These accomplishments will be highlighted in future posts as publications are currently being made by the Royal College of General Practitioners (RCGP)...and UK DUETS.
Mark Fenton, Project Manager of the UK Database of Uncertainties about the Effects of Treatments (UK DUETS), has also been very instrumental in helping us prioritise new research questions/uncertainties, to assist us in obtaining research. By publishing our questions in their Database regarding body odor conditions, NHS is validating our concerns and our need for additional research, and thus, raising awareness. We consulted with experts in the TMAU field, who have been very willing to help our community, to assist us in forming these question, and they are finally compiled to everyone's satisfaction. As soon as they are entered in this Database, we will be posting more about it in this blog.

I asked Karen if she would like to tell us a little about her plight living and dealing with this condition to post in MEBO's Blog, and this is what she says,

My initial inspiration for wanting to work towards bettering the lives of malodour sufferers originally came from my frustration; having searched for over a decade for a reason for my appalling odour, I was eventually diagnosed with TMAU and then...NOT CURED! I also discovered that I was not alone and that I was one of many invisible people with an odour problem. I was outraged to find that odour conditions were considered an awkward taboo among the medical communities and decided that I should be invisible no more. I truly believe that if we work collectively and persistently we can change things. I am very disciplined in trying to manage my odour but cannot control it at all with the treatment protocols currently on offer. My only consolation is to try to change things for future generations of people like me.

On finding Maria and learning about the incredible things she was doing in the USA, I was inspired even more and found that, as a team, we could collaborate most effectively and combine different strategies to get things done. My work is very low level in comparison to that of MEBO Research: I try to contact the main British medical organisations and health politicians and appeal to their humanity through persuasive letters, e-mails and follow-up phone calls. Then Maria reinforces my efforts by contacting the same people and delivering a much more slick, scientific, professional message in the name of a registered charity. It works!! Somehow, we have managed to capture the interest of some important organisations and it has been a real pleasure to find a few committed, compassionate individuals among them (such as Mark Fenton of DUETS) in our search for recognition. I am truly grateful for their reactions to my persistent e-mails and also to the team of professionals who liaise with Maria to help our cause. Maria's efficiency, knowledge and dedication has helped us all and her positivity always makes me want to do more. And we will do more....

Karen has also represented us in the This Morning Show of ITV in the UK, and did a fantastic job at it. Thank you Karen. You are truly an inspiration to us all.


María de la Torre
Founder and Executive Director

A Public Charity
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