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

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at UK Findacure conf 2020

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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
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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

Wednesday, March 27, 2013

MIndfulness for OCD and Anxiety

Mindfulness Based Cognitive Behavioral Therapy (CBT)
for OCD and Anxiety Disorders

A new article, Mindfulness for OCD and Anxiety, written by the OCD Center of Los Angeles therapist, Kimberly Quinlan, MA, provides concrete steps individuals can take to integrate an ancient eastern philosophy of “mindfulness” with traditional Cognitive Behavioral Therapy (CBT) in order to better manage OCD and Anxiety. In this article, she walks us through a few easy steps to help face fears by being mindful.

Dr. Quinlan gives us an example of how an anxiety attack can kick in while on "a metaphorical drive in the wilderness," while nothing takes place other than in one's mind. Even though sufferers do encounter all kinds of negative social reactions in real life when the odor symptoms flare up, how much does the end product - social anxiety - contribute to our misery? As we work towards finding ways to decrease the odor, we can also strive for mental health techniques to help us reduce social anxiety.

Mindfulness Based Cognitive Therapy (MBCT) - Originally developed as a treatment for depression, its primary goal is for clients to see unwanted thoughts and feelings as "passing events in the mind rather than identifying with them or treating them as necessarily accurate readouts on reality".

Kimberley Quinlan, MA, is a psychotherapist at the the OCD Center of Los Angeles, a private, outpatient clinic specializing in Cognitive-Behavioral Therapy (CBT) for the treatment of Obsessive-Compulsive Disorder (OCD) and related conditions. She can be contacted

A EURORDIS and NORD Member Organization


Anonymous said...

I appeciate this post, I understand how it can help people in a positive way. Devils advocate....body odor sfuffers are less likely to be hired for jobs. Not all body odor suffers earn gainfull employment with at home careers. Some sufers can not afford cmputers and internet acess. Some suffers are turned away by homeless shelters forced outside. Some suffers are isolated from family and friends. Etc etc etc...yes wecan utilize these tools but the anxietywill always be there in some form at some time. Because we can not force eployers to hire us. We can not force shelters to take us in. We can not aquire food shelter and clothing without money or help from someone. I do appreciate this post. Please remember how people with body odor conditions are not JUST people with OCD and anxiety. These techniques will not elliviate the side affects of anxiety no matter how positive we in our thoughts, no matter how hard we try to live disite our disability..we still suffer the phsical and emotinal affects of anxiety.

Mar 28, 2013, 2:07:00 PM
Maria de la Torre said...

Anonymous, I totally hear you. The solution to our problems is NOT mental health treatment any more than pain killers are the solution to pain producing medical conditions. Nonetheless, pain killers makes it more tolerable and may even help the sufferer become a little more active in life, as mental health treatment to control anxiety can help sufferers find greater peace, and maybe become more active. This is why we have organized as an international community to promote research to find targeted diagnosis for all kinds of body odor and breath conditions, to then find effective treatments for all, and ultimately, to find a cure. Nothing would replace the value of that.

Mar 28, 2013, 2:14:00 PM
Anonymous said...

I agree 100%!!!!!! Thank you for the post. I have had people in and out of the medical community say things like its ind over matter, if you chose to you can overcome it etc. Its true we should all feel free to participate in life and not allow it to pass us by. Life is short you only get 1 life, don't let anyone or anything stop you from experiencing things. We all have jst as much a need to exerience life as anyone else, never allow another person to influence that. But to psychologists, doctors and SSI they need to understand its never that simple,

Mar 28, 2013, 2:47:00 PM
baguio said...

Hi all. Just thought I would add my 2cents on this.

I have had an issue with social anxiety for quite some time. Whether it's as a direct result of this condition is something that I have often pondered. The conclusions I reach in that respect are always inconclusive. However, I can say with certainty, that it has at the very least been a contributory factor (and continues to be..)to this social anxiety disorder which I am challenged with.

In relation to mindfulness - I have been blessed to have been introduced to this concept 18 months ago. Since then, I have tried to apply it and practice it. I have to say with certainty that there is definitely something in it. As a direct consequence of mindfulness practice, I have been able to wean myself off a highly addictive anti-anxiety medication (one that is reported as being more addictive than heroin!).

With regard to CBT, all the indicators are that it is beneficial and can only lead towards a positive outcome when tackling the issue of anxiety/social anxiety. On a personal level, I have found it very difficult to take this approach - but I guess it's a case of matching the treatment options to the specifics of the individual.

I'm glad that María has posted info surrounding this. Clearly, there are many others with this disorder - who as a consequence - have anxiety-related issues. You would be doing yourself an injustice if you didn't pursue a treatment option in this regard.

Apr 5, 2013, 7:57:00 PM
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