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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, August 29, 2012

Myths about asparagus urine smell

pp. 8-13 in: McDonald, J.H. 2011. Myths of Human Genetics. Sparky House Publishing, Baltimore, Maryland.


As stated in this article written by John H. McDonald, Ph.D., Professor, Department of Biological Sciences, University of Delaware,

After they eat asparagus, some people notice that their urine has a strong, unusual odor. Other people don't notice anything unusual. This was first thought to result from genetic variation in whether or not sulfur compounds in asparagus were secreted into the urine, with the allele for secreting being dominant. Later it was suggested that everyone secretes the compounds in their urine, but only some people can smell the compounds.

After citing works from renowned experts dating from 1950s through 2011, McDonald seems to be saying what we as sufferers have discussed in meetups amongst ourselves and have experienced in our own lives - that "in addition to variation in excretion, there is also variation in the ability to smell the compound," as Dr. McDonald states in this article. He adds,

This complication means that the ability to smell stinky compounds in one's own urine after eating asparagus is not a simple genetic trait. It is not known whether the two separate traits, secreting the compounds and being able to smell them, have a simple genetic basis.

This blog has made reference in posts listed below to the dichotomy sufferers have to deal with on a regular basis - some argue that a particular sufferer is not emitting odor at any given moment in time, while at the same time, others are offended by the odor. This phenomena makes everyday life a very torturous ordeal because a sufferer never knows who does or does not perceive the odor, and thus, what reaction to expect from others. Consistency in social reaction to one's behavior or one's appearance, helps maintain a sense of control and security. This sense of control and security erodes in the life of sufferers because of the unpredictability of people's reactions due to the varying degrees of olfactory sensitivity. Slowly but surely, normal psychological reactions to feeling out of control and vulnerable begin to creep in, such as anxiety and depression, and ultimately, social isolation. Moreover, personal relations are strained when loved ones deny the existence of odor and suspect mental illness is the cause of the "imagined" odor.

When trying to understand whether a person suffers from body odor/halitosis, the following questions need to be addressed:
  1. Are odorous compounds are present or not? Of course, this should be established by scientific tests that identifies and quantifies the compound(s).
  2. Is it that they are present on an intermittent basis? Possibly triggered by diet, mood/mental state, hormonal changes, weakened metabolic, etc.
  3. Is it that only some people who have a keener sense of smell can detect it, while others cannot? "Beauty is in the eye of the beholder, as well as "Odor is in the nose of the beholder."


It is refreshing to read Dr. McDonald's Conclusion:
It is clear that there is variation in two different traits: excretion of sulfur compounds in urine after eating asparagus, and ability to smell those compounds. This means that asking people whether their own urine smells odd after they eat asparagus is not a good way to study this. The limited amount of family data available suggests that excreting may be a simple one-gene character, with the allele for excreting dominant, but more work needs to be done. There is no family data on the smelling/non-smelling trait, only the genomic association study of Pelchat et al. (2011), so more work needs to be done on this trait as well.


Scroll down to read all the related articles in this blog under the following links:

María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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