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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

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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

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BO Sufferers Podcasts

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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
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MEBO survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

Wednesday, November 27, 2013

New research paper on Isolated Persistent Hypermethioninemia

Paper title :  Spectrum of mutations associated with methionine adenosyltransferase I/III deficiency among individuals identified during newborn screening in Japan.

by : Nagao M, Tanaka T, Furujo M. Source Department of Pediatrics and Clinical research, National Hospital Organization Hokkaido Medical Center, Sapporo, Japan

pubmed link to abstract :  isolated persistent hypermethioninemia research paper

It has been noted in the blog before that  isolated persistent hypermethioninemia (IPH) is another known cause of 'metabolic malodor'. There is not much interest in this as it is generally regarded as being 'benign' (i.e. symptomless) apart from a malodour (probably in a transient form).

Only the abstract is free to read, but from the abstract it seems this is a similar paper that geneticists tend to do about metabolic disorders, i.e. checking out a small group of 'sufferers' to check the gene at fault for the sufferers' variants/mutants etc. They estimate that in Japan the 'disorder' may affect about 10 in a million, but 'facts' of these disorders tends to start on the conservative side and tend to focus on 'severe' genetic types. So it is presumably unknown how many may have this disorder in a more 'genetically milder' 'transient' form.

They also claim in this paper that it may not be a 'benign' metabolic disorder (i.e. malodor is not important) as some in their group had  "brain demyelination or neurological complications"

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