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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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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
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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Wednesday, October 9, 2013

Comment about the recent TMAU paper involving Professors Phillips and Shephard

We posted in the blog recently about a new research paper on trimethylaminuria in which Professors' Elizabeth Shephard and Ian Phillips were involved. They have kindly given us permission to post a quote about the paper.

The abstract of the paper can be read on pubmed : Relationships between flavin-containing monooxygenase 3 (FMO3) genotype and trimethylaminuria phenotype in a Japanese population

link : Pubmed TMAU paper abstract


Below is the quote given by Professors' Elizabeth Shephard and Ian Phillips about the paper 

Prof Phillips and Shephard : involved with this TMAU paper
1. Of the 13 individuals diagnosed as severe TMAurics are homozygous or compound heterozygous for mutations that severely affect FMO3 function. Given this preponderance of severe mutations, It is likely that the other 3 have unidentified mutations (in promoter or introns) that have a severe affect on expression or processing of FMO3.

2. Most of the TMAurics are classified (on the basis of urinary excretion) as moderate or mild TMAurics. Of these, none is homozygous or compound heterozygous for mutations that severely affect FMO3 activity. This suggests that it is unlikely that these phenotypes are a consequence of unidentified mutations that severely affect expression or activity of FMO3. However, it is possible that some of these individuals have unknown mutations that have moderate effects on expression of the gene or processing of the RNA.

3. Genotype-phenotype correlation: individuals homozygous or compound heterozygous for mutations that have a severe affect on FMO3 activity will suffer from severe TMAU. Therefore, severe TMAU can be diagnosed genetically. However, most TMAurics suffer from moderate or mild forms of the disorder; these cannot be diagnosed genetically and, thus, must be due to factors other than FMO3 genotype. It is likely that exon sequencing would identify only those affected by severe TMAU and, thus, would not be informative for the majority of TMAU sufferers.

4. For the group there is a strong correlation between total urinary TMA (TMA + TMA N-oxide) and the amount excreted as the free amine (TMA), which implies that individuals with moderate or mild TMAU would benefit from a reduction of total TMA load. 


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