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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
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Latest click here (26 oct) :
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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, January 7, 2011

Exciting changes in Mental Health Field re Olfactory Reference Syndrome


I am very happy to say that I have received, and by extension our whole community has received, an email copy today of the OCD Center of Los Angeles Newsletter from the Clinical Director, Tom Corboy, MFT, with great news for the body odor community. Tom has created a web version of this email for better access to it by everyone. The part of this Newsletter that is of interest to the body odor community is the bottom of the page, "Proposed DSM-5 Changes for OCD and Anxiety Disorders." Tom is informing us not only of, “some very exciting changes at the OCD Center of Los Angeles” but also in the American Psychiatric Association regarding the classification and listing of Olfactory Reference Syndrome (ORS).

As some of us might remember, there was a movement of a group of mental health professionals this past summer of 2010 to include ORS in the in the American Psychiatrist Manual of Mental Disorders as a delusional condition, thus implying a state of psychosis. See the posts in this blog, “Olfactory Reference Syndrome published in PubMed.”

Well, I’m delighted to say that today’s email from Tom informs us, “…that the American Psychiatric Association [APA] is planning to list ORS in the Appendix for Further Research” as opposed to the more serious classification originally sought by some in the mental health field. Moreover, ORS has now clearly been redefined by this LA Center and other Mental Health facilities in the United States, as being “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category.”

This is great news for our International Body Odor Community! As a result of this change in categorization, we will no longer be accused of being psychotic, or schizophrenic or delusional because of our life-altering social anxiety produced by having a body odor condition. This negative former categorization was potentially very detrimental for the sufferer in any future litigation case or even employment possibilities.
In the new category, ORS falls on the neurotic vs. psychotic realm, and treatment will be more geared toward helping the sufferer cope with anxiety and panic attacks, and to help reduce reclusive behavior, as opposed to trying to convince the patient that they are being delusional.


Our Raising Awareness Campaign approach was launched with the help of the survey provided to us by Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School. Dr. Greenberg invited all the members of our community to participate in a survey to hear 'our side of the story,' and many of us filled out this survey. In addition, the online emails and comments we wrote in response to online articles written by various News networks also clearly explained the lack of scientific basis the psychosis ORS diagnosis had, which was based on the varying olfactory capacity of family, friends, and therapist. A post in this blog, entitled, “Raising Social Awareness in the Mental Health Field” depicts an email conversation I had with a representative of the OCD Center in Los Angeles. We emphasized how detrimental it was to try to convince a sufferer that their reality wasn't real simply because these individuals couldn't smell it.

We wrote over and over again how not everyone has the same olfactory capacity to detect scents, and scientific tests need to be developed to establish the presence or absence of odorous compounds in a sufferer perhaps detected only by a certain percentage of society before ever considering that the condition is delusional. As a result of all this effort, the outcome was APA classifying and listing ORS in the "Appendix for Further Research” listing.

Our community also discussed this at length amongst ourselves in the Mental Health Board of the Body Odor Support Forum, which helped us organize our efforts to raise awareness. Many in our community believe that we could benefit from mental health therapy to help us control anxiety, and the obsession we develop of fearing offending others and their potential nasty remarks, fears of loosing our jobs, and to help us come out of social reclusion that many of us find ourselves in.

The reader may refer to this blog’s post, “Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey”, in which she acknowledges that,
body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer.
As a direct result of our survey participation and Raising Awareness email campaign, Dr. Greenberg consequently shifted her opinion on the treatment approach and classification of our condition, as she was quoted on an ABC News article on ORS,

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."

Our campaign was very successful in achieving this final change in classification, THANKS TO EVERYONE WHO PARTICIPATED! If we had not taken action, it could have potentially been "written down in stone" that sufferers are delusional, and that's a scarry thought!

The Raising Awareness Campaign is a very valuable and powerful tool, and if each sufferer found his or her comfortable way to participate in it, all body odor sufferers would become very effective in being better understood by the medical community and hopefully we will achieve the research we so desperately need.


María de la Torre
Founder and Executive Director

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