Admin Control Panel

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

Scroll down and select country
MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


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

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Sunday, May 19, 2019

paper : Mild Persistent Isolated Hypermethioninemia

disorder : persistent isolated hypermethioninemia (PIH)
enzyme at fault : Methionine S-adenosyltransferase
most common gene at fault for enzyme : MAT1A

Metabolic Body/Breath Malodors are probably due to weaknesses in an enzyme (or enzyme overload).
So any papers that may be to do with enzyme disorders that may create a smell are of interest.

Currently Health Professionals are only aware of 'smelly' enzyme disorders which are life-threatening or obviously disabling (apart from TMAU).
Usually these people will have very severe mutations and more likely to be 'homozygous' (mutation on both sides of gene).

Hypermethionemia is a very serious disorder, and so is tested for in some national/state NEWBORN SCREENING PROGRAMS.
Because of this, they will also pick up newborn data statistics on e.g. the commonality of carriers etc.

In this paper they have looked at newborn stats for HYPERMETHIONEMIA caused by MAT1A gene.
The full paper is not out, so its unknown how many were tested.

Paper (abstract. Pubmed) :
Mild Persistent Isolated Hypermethioninemia Identified through Newborn Screening in Michigan

Shades of Gray
Metabolic dept Professionals in Health systems tend to think of Metabolic Disorders as YES or NO. You either have (the severe type ... e.g. homozygous for a severe mutation) ... or not.
They don't contemplate the idea that 'carriers', especially COMPOUND carriers (carrying 2 or more different faults for same gene) may have health issues due to the faults.
Rather than being yes or no, these patients will have various SHADES OF GREY of a disorder, perhaps only having a transient smell (e.g. hypermethionemia, isovaleric acidemia).

Metabolic Consultant attitude to patients ..
Patient is comatose, obviously very ill, crippled, green, dying etc : Patient has something wrong.
You walk, talk, look ok .... Patient is normal.

In the case of MILD TRANSIENT METABOLIC BODY/BREATH MALODOR, this means they miss all cases and are unaware of the disorder.

HYPERMETHIONEMIA and SMELLING ?
In this case there must be a chance that CARRIERS may have a smell problem to do with this enzymes substrates (chemicals).

They say they picked up 16 cases of 'benign' PIH in this Newborn Screen Program.
"We describe 16 asymptomatic individuals with PIH"

Also of interest they say ...
"There were a disproportionate number of individuals with African descent in this cohort."

This seems to tie in with the MEBO Commnunity, but has also been said in a TMAU Paper by Monell.

CARRIERS CAN SMELL ?
It goes to show how even enzyme disorders which are life-threatening, limiting, crippling ... carriers may also have no problem other than a TRANSIENT SMELL, especially if they are COMPOUND carriers. (e.g. carry 2 or more variants for that gene).

Some may feel that FMO3 is still the most likely candidate gene for most cases, but it would seem sensible to also consider any ENZYMES (and so their GENEs) that may cause a smell. 

23andme and Heritage DNA consumer tests
Possibly you can look up these genes in various consumer DNA tests.
Probably they will not give info for the full gene codes, but often they show various fault codons.

Some disorders that may fall in this category
Hypermethionemia.
Isovaleric Acidemia.
FMO3 smells.

Possible Campaign Aims (write to politicians/health leaders etc)
Get Newborn DNA Screen Programs to test for FMO3 variants.
Create 'MET-BO' PROFILE TEST that includes the above enzymes/genes.

get New Posts by EMAIL : Enter your email address :



A EURORDIS and NORD Member Organization

0 comments:

Post a Comment