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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

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

Friday, November 1, 2013

Mass email and letter-sending campaign targeting British MPs

MEBO's Public Relations Director in the UK, Karen, has been very instrumental through the years in spearheading our Raising Awareness Campaign with significant accomplishments. As a continuation of this process, she sends us the following message today announcing a mass email and letter-sending campaign targeting British medical practitioners with a message introducing TMAU and its debilitating nature. Please be a part of this very important mission by letting your voice be heard. The more physicians are exposed to body odor conditions, the better they will be equipped to handle a sufferer who seeks their medical care. The following is a message from Karen:


Don't be put off if the MPs did not respond to us last time; things are changing. Organisations (Medical Research Council etc) are starting to take notice of our voices. Please take part in a mass e-mail and letter-sending campaign targeting British MPs.

We want MPs to recognise the disabling nature of odour conditions and to acknowledge the right of odour sufferers to access education, employment or disability allowance.

On or around the 29th of November, we will remind the British health secretary of our presence and our needs.

I am drafting an e-mail for this purpose and have the contacts listed below:

Draft e-mail:

Metabolic malodour disorders such as Trimthylaminuria (TMAU) can be of a severely debilitating nature. As malodour disorder sufferers emit a repellent odour through their breath, skin and/or pores, their conditions impact upon almost every aspect of their lives.

TMAU, an incurable disorder in which the sufferer cannot oxidise the malodorous trimethylamine, is a condition which encroaches upon the wellbeing of others, thus rendering the sufferer a ‘social misfit’ and inhibiting their career progression. Our community requests specific protective legislation to ensure young odour sufferers reach their full potential in the education system and to enable employed odour sufferers to work in an environment free of harassment and discrimination.
The Disability Act does encompass conditions which adversely affect a person’s daily activities. Yet malodour sufferers often feel unprotected by anti-discriminatory legislation because malodour conditions are still not explicitly regarded as disabilities, and most sufferers do not feel entitled to Disability Living Allowance. If awareness of malodour disorders was increased and more doctors informed about them, then the malodour sufferer would feel more empowered in the workplace. Moreover, if protective legislation were put in place, and malodour disorders clearly recognised as being disabling conditions, malodour suffers could not be so easily excluded from society and their basic human rights denied them.


South West Surrey Constituents
If you are a constituent and would like to write to Jeremy Hunt in his capacity as MP for South West Surrey please use the following contact details:

2 Royal Parade
Tilford Road
GU26 6TD
Telephone: 01428 609 416 (Constituents)

Non constituency enquiries relating to the Department of Health
If you are a not constituent of South West Surrey, but have any comments, feedback, or issues relating to health matters and you wish to write to Jeremy in his capacity as Secretary of State for Health, then please feel free to contact him via telephone number: 0207 210 4850 or via email by clicking on the following link: Contact Jeremy at DoH

Shadow sec of health: Andy Burnham

10 Market Street, Leigh, WN7 1DS
Tel: 01942 682353
House of Commons, London, SW1A 0AA
Tel: 020 7219 8250
Fax: 020 7219 4381

Please support this initiative and forward this message to fellow sufferers if you can

Many thanks,

All sufferers and their families around the world are encouraged to support Karen's mass email and letter-sending on November 29th, as an intricate part of our Raising Awareness Campaign - the first essential step to obtain help for sufferers.


María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization 


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