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March20 podcast Dr Hazen
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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


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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
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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

Tuesday, June 1, 2010

More about the recent Olfactory Reference Syndrome press briefing by Dr Katharine Phillips

The recent annual convention of American Psychiatrists in New Orleans saw interest raised into Olfactory Reference Syndrome, a disorder psychiatrists have come up with to explain people who come to them with body odor or halitosis concerns which they or anyone else associated with the person do not smell. Dr Katharine Phillips, a psychiatrist from the Butler Hospital in Rhode Island, hosted a press briefing on her findings of a small group of patients designated as fitting the ORS criteria.

Of course the big question is, do they really have an odor problem ? The pattern with systemic body odor or halitosis seems to be that most cases are transient and usually relatives or loved ones cannot smell them when they do smell to others. It would seem if a psychiatrist had a potential ORS case's well being as the main concern, it would be sensible to test all potential ORS cases for trimethylaminuria first. Even this is not satisfactory to declare it is in their mind, since it is very likely there are other systemic body odor or halitosis disorders caused by weaknesses in other bodily enzymes, but it is the only form of systemic body odor the medical system will currently accept. Dimethylglycinuria (DMGU) has already been proven as another systemic body odor although it is possibly very rare; however, it suggests that if they look hard enough they will likely find other metabolic weaknesses which will cause body odors. Only one case seems to have ever been documented for DMGU. Mild Isovaleric Acidemia is potentially a more common systemic body odor than DMGU. There's sure to be more, but TMAU does seem to have a chance of being the most common.

So the message to psychiatrist's is, at the very least, always test a potential ORS case for trimethylaminuria. You will likely be very surprised. As a society, the best and cheapest approach to body odor and halitosis would be a research center and clinic, which is something people could write to their politicians about.

Here is more media coverage of the ORS press briefing by Dr Katharine Phillips :

LA Times blog: People who are certain they stink, and the psychiatrists who sense this may be a disorder

ABC News: People Who Think They Stink May Have Mental Disorder 'Olfactory Reference Syndrome'

Medpage today: Body Odor Delusion May Spark Suicide Thoughts

WebMD: Many Delusional About Smelling Bad

Psych Central: Do You Think You Smell? Olfactory Reference Syndrome

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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