Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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)

Wednesday, July 14, 2021

UK TMAU Test Stats 2017-2021 : Activist uses FOI act

A TMAU Activist used the UK Freedom of Information Act to ask Sheffield Children's Hospital the number of TMAU tests done using the new method, and how many were positive.

It took months for SCH to reply but finally they did.

The results are  (using the new TMAU test method)
Feb 2017 : May 2021
samples tested : 1757
tested positive : 212 (12%)

That would suggest say 440 tests a year, with 50 positives.

Nigel's old TMAU Test method 2010 gave results (roughly) :
samples : 600
positive : 200 (33%) 


SCH say the new method is superior and the old method may have been subject to contamination.
Some community members feel Nigel's test gave a better reflection of the community, and so was the better test. Maybe if it was contaminated, it was GOOD contamination !! (i.e. spotting FMO3 cases better).  

Nigel's test had many tmau2 cases (majority), whereas the new test has 0.
This 0 is in line with the few other international TMAU test labs who also have 0 tmau2 cases.
The fact there are no tmau2 cases ever seems unrealistic, making Nigel's old test seem the more realistic test.
Even the old MEBO TMAU test (no longer available) had tmau2s.

Despite the new SCH being as 'strict' as the other few test labs, there are still positives.
212 is 12%. 
A theory is the new method no longer spots tmau2s or 'milds', and so maybe the positives are on the more severe side. The theory is the TMAU test labs only spot severe cases now (and misses the majority, the milds and tmau2s).

At least with positives still being spotted, it seems likely the test will continue to be available despite now being a legacy test in the lab, and probably a bit of a nuisance to them. Certainly the least important test.

NHS Best Policy suggestion : Publish rare disorder test results every 6 months.

UK TMAU test results : 1998 - 2009

UK TMAU test results 1998 - 2011 

 

get New Posts by EMAIL : Enter your email address :


A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

I had my test done through Nigel Manning back in 2008, before submitting a urine test he advised me to do a choline load the night before. The test came back positive for TMAU2, back in 2000 (unbeknown to me) I had had my urine tested for TMAU but it came back negative, no mention of a choline load on that occasion.

The body can vary in how much trimethylamine is stored, so a choline load is advised to determine if the body can metabolise it, thus giving far more accurate results. When I attended the event at the Mark Holland unit in Stockport a couple of years ago, they didn’t advise us to load up on high choline foods, so with TMAU2 a lot of the tests done could come back as a false negative.

Jul 16, 2021, 9:58:00 AM
Post a Comment