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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

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

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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)

Tuesday, March 20, 2018

Sheffield CH publish a TMAU document

Sheffield Children's Hospital have published a TMAU document on their website.
It's an ABRIDGED version of the powerpoint they presented to the UCL London TMAU community group.
While the document is welcome it's still a long way from what a lone national test lab could offer the public.
The lecture was to explain the differences between the 'old' TMAU test they did up to 2016, and the 'new' method.

Sheffield CH TMAU Powerpoint PDF
Page with document link

Some initial eye-catching about the document.

 Assay running for one year
 n = 725
 Includes repeat samples and monitoring patients,
including those on treatment
 147 results below limit of quantitation
 Very low levels, unable to provide quantitative result
 453 results within ref range for TMA and N-oxidation
 94 results outside ref ranges for TMA and N-oxidation
 8 results outside ref range for TMA, within ref range
for N-oxidation
 23 results within ref range for TMA, outside ref range
for N-oxidation
 Mainly known patients on dietary restriction

The document includes a graph of the 725 results



They say :

 Important to note:
 Results from the ‘old’ method cannot be directly
compared to those using our ‘new’ method
 Results obtained by our method cannot be
interpreted using other laboratories reference ranges
(such as those quoted on scientific papers)

Whether that is subjective cannot be confirmed.

Sample Exchange Program between the 4 main known  TMAU labs :
The 4 best known TMAU test labs seem to test each others samples in a small survey each year, presumably to double check results.
It's not clear what this entails. Probably retesting samples to see if they get same results, even though they all use different methods. 
Perhaps they could add South Africa to their program.

Ref ranges :
These seem to have been taken from a 1997 paper (Maschke et al) and from 37 'control' samples to confirm.
1997 paper
Whether this ref range is conservative or 37 controls is standard is unknown.

So the document is welcome but still more for the public would be welcome.
Such as a TMAU page on the site where the public can get details how to test etc. 
People might think that a good minimum for a national test lab. 

Comments are welcome.

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3 comments:

Deb said...

Hi, do you recommend doing the test at Sheffield? or is it better to wait? Thanks

Mar 21, 2018, 9:32:00 AM
blogcontributor2 said...

well it looks like around 16% got a tmau diagnosis.
I think the old test was more.
I expect most people to be 'normal' though.
So you pays your money ...

Mar 21, 2018, 10:17:00 AM
blogcontributor2 said...

with the old test about 1/3 got a positive

Mar 21, 2018, 11:11:00 AM
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