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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

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Blog Archive

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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
120.70.6N/A
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 <<

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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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A EURORDIS and NORD Member Organization

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