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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 map@meboresearch.org

MEBO Private Facebook Group
to join : go to
or contact
Ubiome Gut EXPLORER
10% OFF
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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
BannerFans.com
RESEARCH DETAILS

DONATIONS THRU 31-NOV-2016:
£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

MEBO UK PAYPAL FOR TRINZYME

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MEBO US PAYPAL FOR TRINZYME

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Blog Archive

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.

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Saturday, May 11, 2019

London Meetup 8&9 June at 2pm

London Meetup
Saturday June 8 & Sunday June 9
2pm 
Entrance hall/foyer ROYAL FESTIVAL HALL (South Bank)

Message from Karen and the UK Meetup Group.

LONDON GROUP MEETUP

We will meet from 2pm on both days at the front (main entrance/foyer) of Royal Festival Hall in South Bank. https://www.southbankcentre.co.uk/venues/royal-festival-hall
This venue has indoor and outdoor areas; it is spacious, has plenty of bars and also street theatre nearby, plus Jubilee Gardens.
Everybody is very welcome to come and will feel comfortable in our company.
No photographs will be taken without permission, and people's privacy is always respected.
Please come along and talk about anything and everything.
We will welcome you whatever mood you're in!!
If you can't find us when you arrive, please ring: 07505590972
Contact email : karen.james@meboresearch.org

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Tuesday, May 7, 2019

UK : New MP Email Campaign

To get POLITICIANS aware of METABOLIC BREATH/BODY MALODOUR and to get them to influence the HEALTH SYSTEM in our favor, seems like a very good lead.

A recent email campaign to MPs resulted in 2 UK MPs asking the UK Health Minister what is done for TMAU
Emma Hardy MP reply
Christopher Chope MP reply

One person was to meet their MP about TMAU, but due to the Brexit debacle (MPs needed to vote on Brexit at short notice) it was cancelled for now. Hopefully it can go ahead in the future.

Recent UK TMAU petition to parliament (closes 12 May) 

Simple things can be achieved such as :
1. Getting them to ask a question on TMAU in Parliament.
2. They ask the Health Minister a question on TMAU (e.g. research).
3. Ask for easier access to the TMAU test.
4. Ask them to ask the London Metabolic Clinic (Charles Dent) to host TMAU support meeting like Ireland has started, and to attend.

MEBO's KAREN is at the forefront of this new email campaign.
Karen has this message for the UK Malodor Community.

UK MPs need to hear us

UK ACTIVISTS ARE SENDING EMAILS TO MPS THIS WEEK. PLEASE WRITE TO YOUR LOCAL MP TO SUPPORT THE EFFORT. IT DOESN'T MATTER IF YOU'VE ALREADY SENT THE MP A MESSAGE BEFORE. THE INTENTION IS THAT MANY DIFFERENT MPs WILL RECEIVE AN EMAIL AT THE SAME TIME.
Find your MP : https://www.parliament.uk/mps-lords-and-offices/mps/

I will send the message below:

Many thanks in advance for taking the time to read my email about metabolic body and breath odours such as Trimethylaminuria. Our community are having difficulty conveying the importance of these disorders to medical institutions.

Trimethylaminuria (TMAU) is only one of a number of metabolic body and breath malodour conditions and represents the tip of an iceberg. It is highly under-diagnosed (poorly recognised/misunderstood by health professionals and also inadequately tested for). The body’s inability to neutralise malodorous gaseous compounds, such as trimethylamine, is absolutely not a hygiene issue. Moreover, malodorous chemicals are actually worsened by the use of perfumes. The smelly gases emitted from the body and bodily fluids, which include fecal, rotten egg, rotten fish and ammonia smells, are overwhelming and repellent, causing nausea and allergic-type reactions in many people.

The (TMAU) treatment protocol (dietary choline restriction, rotations of antibiotics, B2 supplementation, chlorophyll, activated charcoal) is ineffective for many people and, even in the cases where choline restriction has successful results, the repercussions are dangerous; choline is a vital nutrient and deficiency leads to health implications.

Malodour disorder impacts negatively on every aspect of the sufferer’s life, and this impact is much more severe in children and teenagers. It impedes normal social interactions, work and school relationships, intimate relationships (devastating for teenagers!) and generally taints the sufferer’s personality development, causing anger, frustration and despair.

As people’s educational achievements and career paths are negatively affected by this disorder, the economic implications are obvious. Many of us are unemployed or under-employed as a result of it. Students struggle to finish education and are discriminated against in the workplace even when they do finish their studies.

Inappropriate treatments and misplaced diagnostic investigations for patients complaining of bad odour are costly to the NHS. Counselling of malodour patients is also costly. A proper cure would be more cost effective.

How you can help us:

Please pose a question in parliament: ask the health secretary to enable a conference in conjunction with UCLH medical professionals and TMAU community members to discuss improving diagnostic testing for these conditions and research into finding solutions.

Please tweet to raise awareness of metabolic body and breath odour conditions among medical practitioners and the general public.
 
Example of what can be achieved : 
Chronic Fatigue Syndrome Debate in Parliament

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