Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Wednesday, July 31, 2019

TMAU Petition : Dominican Republic

A young lady has started a TMAU Petition on
Anyone can sign a petition.

TMAU Petition (Dominican Republic)
to Ministry of Public Health
Dominican Republic

Petition (spanish .... original language)

Promover la concientizacion y realización de análisis para el TMAU (Mal olor corporal)

to Ministerio de salud publica

El TMAU o también llamado Síndrome de olor a pescado es un raro desorden metabólico que afecta a nivel Psicosocial a quienes lo padecen.
Soy una chica que posiblemente padezca la enfermedad pero que gracias a la ignorancia del sector de la salud en República Dominicana no tenga en mis manos un diagnóstico y por lo tanto no pueda tratarse. ¿Que como se que es posible que tenga el TMAU? Mi respuesta es la Internet y gracias a esta he podido enterarme de que alrededor del mundo hay cientos de personas que no han sido diagnosticadas o que gracias a los altos costos no han podido llevar a cabo la realización del estudio. También me enterado que no existe cura... Ahora imaginate vivir el resto de tu vida siendo rechazado por la sociedad, aislado de las personas, sin vida social, sin un diagnóstico, sin la comprensión de los demás y sólo la crueldad de las personas ante los desagradables síntomas de esta enfermedad.
Es por ello que hago esta petición, porque todos aquellos que tenemos la sensación o los síntomas de esta enfermedad merecemos por lo menos un diagnóstico, un tratamiento que nos permita tener una vida lo más remotamente normal, que cuando se busque asistencia médica no se te diga que es un problema en tu cabeza, que es algo psicológico porque no lo es, merecemos comprensión y una oportunidad de vida. Esta petición es para hacer una llamado al sector de la salud y a todo aquel que pueda ayudarnos a quienes posiblemente tengamos el TMAU, si esta petición tiene éxito será un alivio para la comunidad Tmau, será una oportunidad de vida!!

In english ...
Promote awareness and analysis for TMAU (Bad body odor)

to Ministry of Public Health

TMAU or also called Fish Smell Syndrome is a rare metabolic disorder that affects those who suffer from it at the Psychosocial level.
I am a girl who possibly suffers from the disease but that thanks to the ignorance of the health sector in the Dominican Republic does not have a diagnosis in my hands and therefore cannot be treated. How do I know what TMAU might have? My answer is the Internet and thanks to this I have learned that around the world there are hundreds of people who have not been diagnosed or that thanks to the high costs they have not been able to carry out the study. I also learned that there is no cure ... Now imagine living the rest of your life being rejected by society, isolated from people, without social life, without a diagnosis, without the understanding of others and only the cruelty of people before the unpleasant symptoms of this disease.

That is why I make this request, because all those who have the sensation or symptoms of this disease deserve at least a diagnosis, a treatment that allows us to have a life as remotely normal, that when you seek medical assistance you are not Say that it is a problem in your head, that it is something psychological because it is not, we deserve understanding and a chance of life. This request is to make a call to the health sector and anyone who can help us who may have the TMAU, if this request is successful it will be a relief for the Tmau community, it will be a chance of life !!

get New Posts by EMAIL : Enter your email address :

A EURORDIS and NORD Member Organization


Post a Comment