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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

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
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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)

Sunday, January 16, 2022

letter to politicians about MEBO (draft 1)

Draft 1.

Below is a LETTER TO POLITICIANS about METABOLIC BODY/BREATH MALODOR.
Feel free to use, adapt, or write your own.
Writing politicians is our most useful action as :
1. They are unaware.
2. They can tell health systems what to do.
3. They can make things happen



Letter to politicians about METABOLIC BODY/BREATH MALODOR and simple things that can be done to help


Dear


I wish to draw your attention to the disorder ‘benign’ METABOLIC BODY/BREATH MALODOR.
And the misery it causes.
The only current diagnosis is TRIMETHYLAMINURIA (TMAU).
But TRIMETHYLAMINE is the only metabolite ever been tested.

In particular, there are probably simple things that could be done to help sufferers.


Concept of ‘benign’ METABOLIC BODY ODOR. (and typical pattern of disorder).

Most report of fecal smells (and other various gut smells including rotten egg).
Not many report of fish.
Most cannot smell themselves.
It seems a large minority of any population cannot smell sufferers either (probably ‘carriers’).
Most seem very transient sufferers.
For many it starts around puberty or teen years.
Most feel they have ‘gut dysbiosis’.


Important point :

While ‘textbook’ SEVERE TMAU is rare, it seems ‘very transient’ type is much more common.
Going by the haplotypes, it could be a fair few % at least ‘at risk’.


Is TMAU the correct diagnosis ?

Most can relate to TMAU in terms of the concept of metabolic, but most don’t report ‘fish’ smell.
1 theory is it’s the right enzyme identified (FMO3), but the smell is mostly from other FMO3 substrates (probably mainly gut sulfides).
So for now a better name may be ‘FMO3 MALODOR’ until better biomarkers (sulfides) are (easily) idenitified.
Most call it ‘fecal body odor’ (basically smelling of the gut colon volatiles, and more sulfides/amines).
As well as the psychological harm, its likely the person will fall into the ME/CFS category too (i.e.generally feel lousy … due to toxicity).


National approaches to TMAU (only diagnosis on offer) :

Very few countries test even for TMAU, but those that do, it seems to be 1 test service in each country, usually started by curiosity of individuals rather than policy.
Often those individuals have left and TMAU is a legacy test with no interest.
The clinical labs are part of genetic disorder biochemistry labs, and obviously TMAU will be the most trivial disorder to them.


Current Treatment :

Some countries refer to adult metabolic units, where the person is told to stay on low choline diet, with no choline testing etc. Some may see this as a ridiculous basic approach (choline deficiency may even play a role in the disorder).
No countries clinical system is interested, but it keeps metabolic unit dieticians busy.
TMAU is possibly the most common ‘’rare’ genetic disorder’ referral to Adult Metabolic Units.
No-one has confidence in TMAU therapy.


Confidence in TMAU test (not much).

Most in the community ‘pass’ the TMAU biochemical test.
Probably because they don’t smell of Trimethylamine.
It’s not the best biomarker.
It does seem to spot ‘severe’ FMO3 cases. But many false negatives.


Underestimating the numbers ‘at risk’ of FMO3 Malodor :

While ‘severe’ is well documented and seems rare, it seems the majority are ‘borderliners’, ‘outliers’ etc, and make up a fair amount.
It seems gut dysbiosis comes with the syndrome.
You could deem them like type 2 diabetes.
Most seem to be haplotypes of the common missense variants, or even including silents or intron variants.

A 2021 paper seemed to confirm this … https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8618768/

Quote

We realized an experimental study to investigate the role of several coding variants in the causative gene FMO3, that were only considered as polymorphic or benign, even if the available literature on them did not functionally explain their ineffectiveness on the encoded enzyme …

Conclusions: Even if further functional assays will confirm our predictive results, considering the possible role of FMO3 variants with still uncertain effects, might be a relevant step towards the detection of novel scenarios in TMAU etiopathogenesis.

To be blunt :
If you know anyone you thought had a ‘fart’ problem, or bad breath not deemed to be the obvious type, they are probably ‘FMO3 MALODOR’ transient cases.


What can be done to help ?
Unlike most disorders which are likely properly identified, much could be done for FMO3 MALODOR as the correct biomarker test is not available yet, and dysbiosis adds in a factor that is not genetic.


Some examples of possible help :

Correct biomarker test. (Test for sulfides and amines that are good FMO3 substrates).
Allow people to test direct and pay, without a Dr involved. Drs don’t want to order the test.
Add choline testing to the TMAU clinical visit.
Meet up with the community to discuss further possibilities.
Awareness campaign.
Perhaps look at possibility of e-sensor device.
Perhaps look for simpler test (e.g. lateral flow test, strip tests).
Order clinical test labs to publish test stats half-yearly.
Allow us to fund research (need advice in setting up).
Most ‘pass’ the urine test, so let them DNA test at same time. Charge a cost if need be.

This may be the last ‘relatively common’ disorder, and a pretty miserable psychological one.
The suicide rate is very high.

Sub-par FMO3 may also have a broader longterm negative health effect hitherto unknown. It has already been suggested that TMA-oxide (and some labs say TMA) may be a factor in CVD and perhaps other diseases.


Regards
 

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A EURORDIS and NORD Member Organization

1 comments:

luboss said...

sorry but politicians dont give damn about people they care only for them selfs and they families

Jan 21, 2022, 2:52:00 AM
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