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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
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"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

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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
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Metabolomic Profiling Study

Start : Aug 2016
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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, September 25, 2019

11 'self reporting' adult smell patients ? : most have 158 and 308

A new French anecdotal study.
11 adults self-reporting with smells. 

Seems to be a Paris Hospital  Metabolic Testing dept and lab (including psychiatric dept).
They have 13 volunteers.
2 are children with severe TMAU1
11 are 'self-reporting' adults who 'can't be smelt' and all are told they are 'normal' for TMAU (as shown in TMAU urine test result)

But curiously :
Of the 11 adults ...
1 refused testing (why add them to the results ?)
1 did the FMO3 gene test only (they were homo for 158)

so 9 adults did both the DNA and urine test ... (all deemed normal for the urine test)
FMO3 mutations in summary (in the 9 adults that DNA tested)
2 carried (hetero) 158
3 were homo for 158
2 had the combo 158 - 308
2 had no mutation

FMO3 mutations in 10 'self-reporting' adults

158 158 (didn't do urine test)
158 308
no DNA test (refused) ... but - +ve urine test

FMO3 mutations in summary (in the 9 adults that DNA tested)
2 carried (hetero) 158
3 were homo for 158
2 had the combo 158 - 308
2 had no mutation

So only 2/9 had no FMO3 mutation (or none regarded as mutations) in the 532 coding sequence.

E158K , V257M , E308G
FMO3 coding sequence is a 532 amino acid code.
The most common type of 'variant' is a missense, the wrong amino at a codon.
FMO3 has 3 very common missense variants (known as SNP's) :

E158K (at codon 158, E is code for amino, K is code for wrong amino)
V257M (at codon 257)
E308G (at codon 308)

These 3 SNPs are very common :
E158K : maybe 40% carry ?
E308G : maybe 20% carry ?
V257M : maybe 10% carry ?

Given the commonness, they must be relatively mild (to just carry one, or else e.g. 40% of the world would smell).
So these 3 variants are much milder compared to 'severe' mutations.

Back to the paper :
Even though they are common, a curious mind might still find it unusual 158 and 308 showed up so often in the self-reporting adults

9 adults
3 were homo for 158
2 had 158 308 combo
These 5 are a bit unusual
another 2 carry 158 (not too unusual)

The surprise (?) is that only 2/9 carry no FMO3 mutation

Motive of the test :
It seems a psychiatry dept was involved, perhaps leading the study.
Since one adult did no tests, it could be suspected it was a 'psychiatric' initiated study.
Perhaps the 2 kids were added to the study to show what 'real TMAU results' look like.
The 2 kids had smelt to Dr's.
The 11 adults had never smelt to Dr's.

Curiosity 2 :
The 2 kids only 'carried' 153.
TMAU1 is taught as being 'dominant'.
153 is a much rarer mutation, and presumably quite severe.
Both the kids carried another mutation as well as 153, but maybe 153 is the 'sinker'.
One carried 140 (perhaps another severe one).
One carried the common 257.

Hospital metabolic lab papers :
Sadly it's probably a 'drive-by' paper, maybe initiated by the psychiatry dept.
A researcher interested in TMAU would maybe think 'this 158 308 among them is odd and worth more investigation'.
But in this case its probably the end of the road and perhaps the 11 adults will get a ORS diagnosis.

FMO3 consumer testing ?
Its maybe worth seeing if you carry 158, 257 or 308.
Probably all ancestry tests have them in their raw data.
It won't bring you nearer to a diagnosis but adds to the group evidence maybe ??

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