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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

Saturday, May 19, 2018

Mental Health: A step closer to the right diagnosis

A step closer to getting the right
The difference between Trimethylaminuria,
PATM, Other Malodor conditions and Olfactory Reference Syndrome

MEBO Mental Health director

Disclaimer: Please be aware that the information shared in this article is not a replacement for advice, diagnosis and treatment from a professional, such as a health practitioner, therapist, psychologist or psychiatrist. If you want to talk and need support from a professional, I would recommend you to contact your doctor for a referral or find licensed professional in your country.

"...feelings of shame, social rejection, depression, anxiety and isolation"
Our MEBO Health Director, Crissan Rosalia, Health psychologist, MSc., is always thinking of ways to help us cope with the emotional consequences of the overwhelming uncertainty that comes with the absence of diagnostic possibilities for malodor and PATM conditions around the world. We realize that this is due to the lack of research resulting in the lack of knowledge and understanding on the part of the scientific and medical communities around the world.

"Are the symptoms caused by a physical or psychological condition?"
Crissan has written the following 13 page paper in order to help us put into perspective the events and resulting emotions facing sufferers on a daily basis, from the, "feelings of shame, social rejection, depression, anxiety and isolation" to the lingering question sufferers, families, and health providers ask, "Are the symptoms caused by a physical or psychological condition?" The following are excerpts from the Introduction section of Crissan's paper:

Finding out what the cause is can help sufferers take the right steps to get adequate diagnosis, treatment and support. However for people suffering with symptoms of body odor and social isolation, it can a very difficult and long road to find out what is causing their symptoms. Some people may have doubts, because they are not able to detect the symptoms themselves and are dependent on the reactions, social cues and comments of people around.

Families and friends might deny the symptoms because they are not able to detect the odors either. Sufferers are then judged to be mentally unstable and are not believed by their families. However, strangers and people on the street might comment on odors, coworkers might harass, complain or isolate the person who is suffering. All of this can lead to a lot of distress and an increase in frustration and isolation for the sufferer who is very aware that something is wrong but is left alone in his or her search for answers.

When sufferers consult a professional they are quickly labeled with having a mental illness such as Olfactory Reference Syndrome (ORS), Delusions or Depression. This
might inhibit sufferers of consulting a professional and this can also delay the process of taking the necessary steps.

In this article, we will discuss different malodor conditions, PATM and a couple of psychological conditions, such as ORS. The aim of this article is to illustrate the causes, similarities and differences of these different conditions and the importance of getting the right diagnosis, which can lead to an adequate treatment plan and alleviation of malodor symptoms, whether the nature is psychological or physical.

PART 1: Different physical malodor conditions, symptoms and diagnosis includes Primary and Secondary Trimethylaminuria (TMAU), Other Metabolic conditions, Bromhidrosis, Fecal Body odor, Halitosis, Diagnosis, Psychological impact.

PART 2: PATM, What is PATM and how is it diagnosed?

PART 3: Psychological malodor conditions, Olfactory Reference Syndrome (ORS), psychological effects of ORS, Phantosmia, Cacosmia and Hallucinations.

PART 4: How do you know if your condition is physical or psychological? Steps to take.

See all of Crissan's posts in this blog (scroll down and click on Older Posts to see them all) with this link.

I'm certain I speak for our whole international community when I thank Crissan for her volunteer work to our community with the countless hours she dedicates to writing papers such as this one for our benefit and well-being. Thank you, Crissan!


María de la Torre
Founder and Executive Director

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Anonymous said...

Porque se rinden en la busqueda de ayuda porque no sienten compasión de nosotros. Vale la pena seguir viviendo así, la dieta significa dejar de comer todo,nunca jamás volver a salir a la sociedad escondernos como ratas. Me siento defraudada nos dejaron solos. Somos tan poco valiosos que no les importa si morimos por que no podemos mas con esta enfermedad que no deberia llamarse con el nombre que tiene si no enfermedad de la verguenza la tristeza o el odio que siente la gente por mi solo por llevar esta catastrofe de enfermedad sobre mis hombros. Yo soy un amor de persona despierto solo odio porqué me juzga por mi olor. No se hasta que día pueda mas con esta enfermedad

May 22, 2018, 7:30:00 PM
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