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

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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

NO LONGER RECRUITING

Participation info : LINK English

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TMAU Petition world
TMAU UK end total:262
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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


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Return cut-off date : passed
Analysis can take 6/8 weeks
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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

Tuesday, February 24, 2009

2007 paper : Monell Senses Center : Trimethylaminuria in a sample of body odor and halitosis visitors

Medical Paper 2007: Human breath odors and their use in diagnosis.

Whittle CL, Fakharzadeh S, Eades J, Preti G

Monell Chemical Senses Center, 3500 Market Street, Philadelphia, PA 19104, USA.

http://www.ncbi.nlm.nih.gov/pubmed/17435133

This is probably the current medical 'signature' paper on the concept of systemic body odor, albeit, it seems as if they only accept trimethylaminuria in regards of this concept, and possibly will historically be seen as an interim paper until serious research into systemic odors is conducted broadly by the medical community. The paper is thought-provoking nevertheless, but unfortunately the full paper is not available free. If anything, it shows how far off we are to understanding fecal body odor and such types of systemic odor problems which seem to be the most common type on the body odor forums. An especially interesting point is that out of all those who attended the Monell Center in the paper (300+); of the 102 who went on to fail the TMAU urine test, it seems very few could be smelt (10% ? after the choline challenge ?), and of the 6 who done a certain group of tests, only the 2 with the severe TMAU smelt of fish (?). It isn't clear exactly was meant in these statements, and would need to be clarified.
...In our population, all of whom have been seen in person, the fish odor presentation was present in only about 10% of individuals who
are TMAU-positive. Further to this point, these individuals emitted a strong fish odor recognizable at social distances only after choline challenge...

... TMAU is known to be caused by a “spectrum” of genetic changes to the gene that codes for FMO3. Consequently, this variation may be due, in part, to differences in the genotype of each of the TMAU-positive individuals. This is supported by our clinical observations regarding the odor of different individuals as well as genotyping data. Two of the six TMAU-positive individuals whose saliva was analyzed presented with overt fish odor from their upper body and oral cavity after (∼22 h) choline challenge. As noted above, each of these male subjects had a low conversion of TMA to TMAO (<25%)

Amongst other things, this paper eludes as to how the odor in TMAU varies in type of odor as well as in its inconsistent manifestation, since it may be sporadic. This intermittent presentation frequently results in the sufferer being referred to a psychiatrist when family members or physicians at times don’t smell the odor, and therefore arrive at the conclusion that the sufferer has developed an Olfactory Reference Syndrome. This seems to be the biggest source of conflict between sufferers and their families and or physicians.
TMA is a gas at body temperature and has a foul, rotten fish odor. At low concentrations it may be perceived as unpleasant or garbage-like...The main difficulties experienced by TMAU-affected individuals are psychosocial ones that are caused by sporadic, undiagnosed odor production.
They mention that a 'fish odor' for trimethylaminuria is not always correct, and that it can vary . The discussion section of this paper (page 10) states,
Consequently, the assumption that the individual with TMAU will always smell "like fish" is incorrect and is often the reason that many TMAU-affected individuals are sent from one clinical specialist to another: quite often they are sent to a psychiatrist since their reported symptoms are thought to be subjective.
On the Monell website, they mention trimethylaminuria causing other smells, but not fecal or gas odor. It's up to each reader as to how to interpret this omission of what seem the most common smells on the body odor forums.
TMA has a foul, fishy odor. At low concentrations, it may be perceived as unpleasant or “garbage-like.”

http://www.monell.org/TMAU/pretiTMAU.pdf (pdf download)

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