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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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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, February 2, 2010

Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey

I have received a reply from Dr. Jennifer L. Greenberg, Psy.D., OCD and Related Disorders Program, Massachusetts General Hospital and Harvard Medical School,, 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."

This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns.I will let her email message speak for itself, and post it here with my reply to her below. Each sufferer and family member is welcome to make his/her own personal decision whether to fill out the survey,, and to email her any additional comment or information, as she is welcoming it. Please note the personal information disclosure at the beginning of the survey. You may opt to not provide this info online, and provide it later by other means.

Dear Maria,

Thank you for contacting us regarding our survey. As you know, body odor concerns are understudied and not very well understood at this time. We are very excited by the mutual interest and discussion generated by our survey. 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. This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns. For some individuals, the source of the body odor may be a diagnosed (or undiagnosed) medical condition; however, for others, no perceivable body odor is emitted, yet they spend hours/day worried about a perceived odor. We believe that all individuals with body odor concerns may suffer immensely with worry about the odor (or perceived odor) and its impact on their social/school/work life. In filling out the survey, we welcome your readers to write in about their specific symptoms, treatment experiences and/or medical diagnoses in an effort to help us better understand their experiences.

We hope to learn more about these various experiences, and look forward to a continued, fruitful dialogue.

Best regards,
Jennifer L. Greenberg, Psy.D.
OCD and Related Disorders Program
Massachusetts General Hospital
My reply to Dr. Greenberg:
Dear Dr. Greenberg,

I am so encouraged by your email. I will post it in my blog and in the forums to encourage all to give you feedback. Thank you so very much for your very compassionate and understanding position. Yes, we all suffer at a very deep level for years on end, with no hope in sight. I am certain that with better medical diagnosis of the causes of odor, we would be able to keep our mental and emotional focus in check, but all this uncertainty only triggers the most torturous and tormenting fears and totally disrupts not only our social life but also our ability to maintain employment, many college graduates give up and abandon their careers as the odor is a major obstacle, and even worse, some bright and inspired college students drop out because they can't stand the verbal attacks from not only classmates but even some professors.

Again, THANK YOU, for looking in our direction. If there is anything I can help you with in your studies, please don't hesitate to let me know. We are all so hopeful in that you would seek to understand our emotional/mental state and perhaps write an article or two in the professional journals to explain it to the rest of the mental health community???

Warmest Regards,

María de la Torre
MEBO Research
786 228-6880

P.S. I leave you with a quote from one of our posters:

Hi TMAU sufferers
I was diagnosed in 2005 after 20 odd years of not knowing what the cause was.It took a long time for me to pluck up the courage to seek help, though at the time GP was unhelpful as he thought it was all in my head and I was just paranoid.
I was in a relationship for 20yrs and my partner was unable to smell any offensive odour and by the way neither can I, which is frustrating and therefore difficult to establish if anything ie food stress sweating makes the condition worse.
I did eat fish last time about 20 years ago and I could smell it in my nostrils if I took a hard short breath through my nose and my father did comment that he could smell fishy odour.No surprise I didn't eat fish again apart from once testing if it happened again and the smell was not present in my nose.
I think it is very different for each individual
The only comments I have ever had are when I have been at work like in my presence, What's that smell? to aftershave being sprayed on me and a wash bag being thrown at me.
It makes you feel embarrassed, ashamed, angry,paranoid,frustrated and you just want to return to your home and not go out again.
I do think that my condition is not as bad as other TMAU sufferers and I am able to still be employed as my job involves travel and I work with different people almost all the time and not in an office environment with the same people
It is a struggle and I am always on my guard and only truly relax when I'm at home.
The biggest relief for me was finding out that I wasn't going mad and just paranoid and that I do have a metabolic disorder.
Hopefully I will get to chat to you at some stage and thank you for reading my story lots more to say but I think enough for now.


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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