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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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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, October 13, 2020

Dublin TMAU study on mental health

A new TMAU paper by Prof/Dr Eileen Treacy et al at Dublin Adult Metabolic Unit.

Its a follow up to a 'stat' paper they did last year (stat papers are very useful, especially if DNA tested).
The unit has a TMAU Support Group (which no other Adult Unit worldwide seems to have).
From this, they first did a paper on results (biochemical and FMO3 gene).
Now they have selected 6 of those 20 people to ask about their mental health.

Impact of trimethylaminuria on daily psychosocial functioning
Daniel Roddy| Philomena McCarthy| Darragh Nerney| Jennifer Mulligan-Rabbitt| Edwin Smith| Eileen P. Treacy

National Centre for Inherited MetabolicDisorders, The Mater Misericordiae University Hospital, Dublin, Ireland

Quotes from paper ...

We have recently reported the biochemical and genetic characteristics of 13 Irish adult patients with TMAU attending the main Irish Reference Center. Research on the behavioral and psychosocial aspects of this condition is limited. This study explores the patients' perspec-tives of living with TMAU in Ireland

The results suggest that the participants experienced a negative journey to diagnosis. Fear, anxiety, paranoia, and dysfunctional thinking are a constant struggle. Participants reported using avoidant coping mechanisms and strategic planning to navigate daily life.

IDInitial diagnostic urinary TMA level (at presentation) (μmol/mmol creat)aMost recent TMA level (μmol/mmol creat)bGenotype
212.1<2.5No pathogenic variant detected
324.840.3Compound heterozygous for c.458C>T,p.(Pro153Leu) and c.682G>A,p.(Gly228Ser)
425.40.6Heterozygous for c.472G>A,p.(Glu158Lys) and c.932A>G,p.(Glu308Gly)
511.814.4Compound heterozygous for c.458C>T,p.(Pro153Leu) and c.694G>T,p.(Asp232Tyr)
635.230.1Compound heterozygous for c.458C>T,p.(Pro153Leu) and c.989G>A,p.(Gly330Glu)
>> Full Paper <<

side-note (opinion) : 
The first study used 'Nigel's' old TMAU urine test method at Sheffield, which seemed to roughly match the numbers of people on TMAU forums to a degree.
This new study used the NEW SHEFFIELD TEST METHOD, which doesn't seem to match forums (far far less 'positives') and seems to only spot 'severe' cases. The new method is similar or same to most/all other worldwide clinical TMAU test labs.
In summary, it seems to miss 'the grays' now. 

Some would argue TMA is the wrong biomarker for 'FMO3 Malodor'.
Or more biomarkers should be added (FMO3 Sulfides).

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