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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

Friday, March 2, 2018

Mental Health Support

In addition to pursuing appropriate protocols to help sufferers control odor symptoms, there is a very very strong need for guidance and counseling to help cope with living with this condition. We are most fortunate that Crissan Rosalia has been available to us throughout the years reaching out to us in our online private support groups.

Crissan has the following message for us at this time:
The psychological consequences of coping with Trimethylaminuria, malodor conditions or PATM can be extensive. Some people are in so much emotional pain that they feel that they are not able to cope anymore. A lot of members feel hesitant to seek psychological help because they do not think the root (cause) of the problem is of psychological origin. Even physical illnesses can have such an impact on our lives that they can lead to stress, emotional dysregulation, depression, anxiety, eating disorders or other mental or emotional disorders.

Other reasons might be:
  • Some people are afraid of the stigma of seeing a therapist because of their cultural or religious beliefs.
  • Lastly, some people say they don’t have the money, insurance or finances to pay for treatment.
Please don’t let doubt, lack of finances, beliefs about the cause of the condition, cultural beliefs about mental illness, keep you from seeking help. There is always a fitting option for you. You can get the necessary support you need.
If you want to talk to someone or If you feel that you need help, for example with stress management, emotion regulation, depression, anxiety or thoughts about suicide.

Please consider the following steps:

  1. Talk to your family and close friends about your thoughts and feelings
  2. Talk or reach out to people in the support group MEBO, TMAU/PATM and Rare connect
  3. Talk to people in support groups for people with Anxiety, Depression or other psychological conditions
  4. Talk to your doctor/ general practitioner
  5. Seek help from a professional, for example, a coach, counselor, psychologist or psychiatrist
  6. If you’re spiritual and need prayer, there is a group of members that are willing to pray for you, the group is called TMAU overcomers. You can also talk to your pastor, church elders or spiritual counselors.
  7. As a sufferer and psychologist, I offer online counseling services to all members with malodor conditions. If you are interested and want more information, please send me an email at
If you’re having suicidal thoughts or feeling suicidal:
  1. Call a suicide hotline
  2. Call 911 or the helpline in your country (see the list of international phone numbers beneath)
Crissan Rosalia, Psychologist
Coach/Counselor at Compass Holistic
Coach at Re-Charge Coaching & Counseling
March 1, 2018


María de la Torre
Founder and Executive Director

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Ánonimo said...

Me siento triste porqué es tan difícil dar respuesta a una enfermedad que parece tan sencilla. Aqui en colombia toda una ciudad estaba contaminada de malos olores a causa de unas fabricas que queman desechos de res inmediatamente lo resovieron crearon un producto

Mar 3, 2018, 9:19:00 AM
Ánonimo said...

Crearon un producto para todo el ambiente de una ciudad completa que neutralizaba el mal olor. Porqué es tan difícil entonces para nosotros no se si seguir teniendo esperanzas con lo que nunca podra tener solucion ni respuesta a nosotros los enfermos.

Mar 3, 2018, 9:22:00 AM
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