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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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
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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, May 28, 2010

ABC News article on Olfactory Reference Syndrome

RE: ABC News article on Olfactory Reference Syndrome

Back in January 30, 2010 we received an invitation in a comment in this blog under this post, from Drs. Jennifer Greenberg, Psy.D., and Sabine Wilhelm, Ph.D., who invited us to participate in their survey as they were conducting a research study on Olfactory Reference Syndrome (ORS). Many in our community participated in this survey, and Dr. Greenberg and I had a great deal of discussion regarding this diagnosis as noted in this blog’s post, Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey’ and Dr. Greenberg’s reply.

"What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder." Dr. Jennifer L Greenberg, Psy.D
Even though this ABC News article is profoundly upsetting in that it talks about some psychiatrists considering potentially listing ORS as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders, thus giving it greater validation, I am pleased to say that Dr. Jennifer Greenberg, stood up and gave her opinion in this article about her shift of treatment focus from ORS to OCD. This is a step in the right direction. The customary treatment focus for ORS is geared toward curing someone of a delusional condition. However, Dr. Greenberg has shifted her opinion on the treatment approach,

A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.

While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."

The patients who end up at specialized clinics such as Greenberg's, Phillips' and the OCD Center of Los Angeles often receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking.

This is an initial positive step forward with signs of having been influenced by MeBO's Raising Social Awareness Campaign as a united international community. Here's one of the comments I wrote in this article on May 28, 2010,

Thank you Dr. Greenberg for shifting the focus of treatment from trying to convince a patient that they are delusional to instead be a disorder that is closer to OCD, in which the patient is encouraged to receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking. It is very true that not everyone in society perceives their odor, so at least there is a window of opportunity to enjoy a productive social life. Unfortunately, those persons who are offended by one’s body odor would not be good candidates to socialize with, but there are those persons who simply don’t perceive some body odors.

Maria de la Torre
Founder and Director
MEBO Research

Thanks to everyone who participated in Dr. Greenberg's survey and who wrote to her as she reached out to us to gather information. I also recommend that anyone who feels lead to do so write a comment in this article thanking Dr. Greenberg for directing her attention to our needs.

María de la Torre
President and Chief Executive Officer

UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.


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