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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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BO Sufferers Podcasts

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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

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MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Wednesday, July 31, 2019

TMAU Petition : Dominican Republic

A young lady has started a TMAU Petition on Change.org.
Anyone can sign a Change.org 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 !!

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