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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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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
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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, June 20, 2014

MEBO Raising Awareness Campaign: Body Odor and Halitosis

As part of MEBO's Mission to raise awareness in the medical field and community at large around the world, all sufferers are invited to use any information below to support this effort.

As the Founder and Executive Director of MEBO Research, Inc. (MEBO), an international patient-advocacy Charity, I would like to depict the psycho-social effects of living with uncontrollable or difficult to control body and breath odor conditions. MEBO's Mission is to work with laboratories from around the world to launch trimethylaminuria (TMAU) test programs, to initiate research for treatment of rare genetic metabolic diseases that result in body malodor and halitosis, and to carry out our Raising Awareness Campaign through media networks and professional medical journals.


Chronic and difficult to control, if not impossible to control, body odor and halitosis are the result of a physical impairment that causes social isolation with significant adverse implications on quality of life, productivity and psychological health. It is a rare universal disease, which transcends national and racial boundaries, as depicted by sufferers coming together from around the world under MEBO’s flagship to proactively pursue research for treatment and a cure.


All human interaction experienced by body odor and halitosis sufferers is compromised at a most basic level, whether it is in the workplace, education, general public or indeed romantic and family life, leading to discrimination transcending the home, workplace and in the general public. Offensive odor as a stimulus for the uninitiated creates a strong aversion, an evolutionary response to potentially infectious stimuli. The evolutionary response to noxious olfactory stimuli is one of disgust. It has been suggested that this serves as a method of guarding against contact with potentially infectious and harmful substances. It is possible that the impact of these conditions on patients’ lives is great. Social relationships are one of the pillars of quality of life, and social isolation is known to correlate with psychological comorbidities, such as chronic depression and anxiety. Patients with difficult to control body odor and halitosis frequently tell a sorry tale of constant social rejection, psychosocial assaults, and as a result, usually have lives of isolation with all the associated psychological comorbidity that this entails.


Human nature being what it is, there is likely to be discriminative and human rights issues if this malodorous medical condition is present, no matter what the qualifications, personality traits, personal appearance and demeanor of a job candidate. Few employers would be willing to recruit a malodorous person to a workforce, especially for work involving the general public, such as sales assistant or waiter/waitress. The repeated rejections are not usually openly discussed, as employers are quite careful not to incite discrimination suits against themselves.


Those body odor and halitosis patients who manage to find employment are prone to face further discrimination and develop a deep sense of job insecurity and instability, which further contributes to chronic depression and the development of an anxiety disorder. As mentioned previously, malodor medical conditions are virtually unknown by members of the general public. The workplace becomes just another platform of compromised social interaction. There are frequent reports of unfair dismissal, sustained bullying campaigns and other inequalities such as being overlooked for promotion, etc.

Such is the stigma and social unacceptability of suffering with malodorous medical condition such as TMAU that many patients attempt to work from home. In these times of global recession however, work of this nature is difficult to come by without specific skill sets.


It is unnatural and unhealthy for an individual to exist in a state of constant social rejection. Such maltreatment all too frequently comes at a psychological cost to the patient. Chronic social anxiety and depression are especially prevalent, and these are well known issues related to decreased productivity and unemployment.


It will by now be readily apparent that even if the symptoms of body odor and halitosis can be controlled (not always possible for many patients), its management can become a lifestyle, demanding constant attention and research. If the patient manages to find employment that provides medical insurance benefits, few medical insurance policies cover conditions like TMAU, resulting in tremendous financial cost to the patient.

The rareness of the conditions can mean that patients must travel long distance to specialist physicians for consultation and treatment. This is costly not just financially, but in terms of time costs, which could make work difficult for sufferers.
Dietary supplements, specialist foods, soaps and antibiotics and the other products that aim to control the symptoms do not come cheap, and nonetheless, are limited in its effectiveness in controlling symptoms.


Since body odor and halitosis symptoms present at an early age, education is adversely affected, leading to restricted employment opportunities throughout the person’s potentially productive years. As such, It is a condition comprising of anxiety, depression, social maltreatment, bullying in the schools, and general discrimination, which leads the sufferer toward a reclusive life of isolation. This is particularly most damaging during the developmental stage in one’s life, in puberty, when the odor most typically worsens with hormonal changes. It is during this time, that a sufferer is bullied in school, compromising his or her normal psycho-social and psycho-sexual development. In addition, since hormonal changes trigger more severe odor symptoms just before and during menstruation, females are particularly compromised in their psycho-social and psycho-sexual development. As a result, many sufferers drop out of school, which later manifest in restricting employment options.


In addition to TMAU, there are other yet-to-be diagnosed systemic body odor conditions not related to well-known physical illnesses that may also cause uncontrollable body odor, halitosis and bromhidrosis. It is most unfortunate that not all body odor sufferers can financially afford to pay for a TMAU test in the United States in light of the employment difficulties these conditions produce, and thus, the uncontrollable odor condition remains undiagnosed. Additionally, not all who test positive for TMAU are able to control their odor with the recommended TMAU Odor-Management Protocol, thus implying that there may also be additional causes of odor that still need to be researched and identified.

For all of the above-mentioned reasons, I would like to ask you to consider Minerve Jacques for SSI benefits. These benefits will assist her in receiving the much needed help to provide a fundamental financial support while she undergoes mental health therapy to assist her in coping with living with this condition. Your assistance in this matter will be greatly appreciated.

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María de la Torre
Founder and Executive Director

A Public Charity (em português)
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