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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

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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
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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, January 3, 2012

Methionine adenosyltransferase deficiency and body odor/halitosis

enzyme at fault : Methionine adenosyltransferase 1 or 3
easiest way to detect : raised methionine plasma, or DNA test

MAT deficiency is step 1
Note : other enzymes can cause hypermethioninemia, but they are also expected to cause obvious severe health disorders. If it is just an odor problem or perhaps spurious health problems, then the hypermethioninemia is expected to be 'isolated MAT1/3 deficiency', commonly referred to as 'isolated persistent hypermethioninemia'

MEBO Research is always looking at the various enzymes that may be at fault for no obvious health problems except a body odor and/or halitosis. One such enzyme that may be a problem with some is the Methionine adenosyltransferase 1 or 3 enzyme, that is part of the 'methionine cycle' and is currently thought to result in an odor caused by dimethylsulfide (a boiled cabbage odor), but whether other sulfury odors may also be possible is not yet known.

How to test

The easiest test is probably a methionine plasma test, since an increase in methionine level is predicted likely if the person is smelling at that time. Whether the person feels they would need to do it as a loading test (i.e. load up with a methionine dose) is currently debated. Since most in our community feel they are 'episodic' odor cases, maybe a loading test would be best. Methionine plasma testing is part of a regular 'amino acids' test performed in pediatric clinical testing labs, so is a relatively common test. However, apparently the offensive odor for this deficiency is caused by dimethylsulfide, and this will not be commonly tested. Whether other sulfides or thiols etc could also be implicated is currently unknown. It can be seen that when cysteine is further metabolized that hydrogen sulfide can be produced.

In the methionine cycle, there are a number of other enzymes that could be at fault too. However these seem associated with other severe health disorders, and an odor would probably be the last of your concerns. The MAT1/3 enzyme is the enzyme at step 1 of the methionine cycle.

So, testing for Methionine adenosyltransferase 1 or 3 deficiency seems a sensible enzyme to rule out when testing for systemic body odors.  


Links on the subject :

http://www.nature.com/ejcn/journal/v59/n6/fig_tab/1602138f1.html
http://www.thesgc.org/structures/details?pdbid=2obv
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1801505/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185831/?tool=pubmed
http://www.ncbi.nlm.nih.gov/pubmed/1527987
http://www.ncbi.nlm.nih.gov/pubmed/18500573
Pubmed search
body odor petition
MEBO Research

4 comments:

Anonymous said...

I really struggle through life with TMAU I cant take much more of isolation . Please give us some hope.

Jan 4, 2012, 11:47:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

Hi Anonymous,
I'm sorry you are suffering so much with this isolation. I hope you join our international skype group by installing Skype, select your Skype username, and invite contacts for your list. You can invite me, under my full name, Maria de la Torre, or the mebopetition.chat sponsor, Jo Jo, who also goes by username skunkhugsj. Once you have registered, you can select the group of people you want to speak with either by chat (writing), or voice calls, or even video calls (video calls are for 2 people only).

By spending time communicating with the 21 people who have made themselves available to skype with you, you will be able to discuss how to best work out your odor problems. Don't despair, read the post I did a few days ago about where we are going as an international community. There is hope.

María

Jan 5, 2012, 12:03:00 AM
Anonymous said...

It seems impossible to 'work out' this odor problem but dont stop loving life. I have just drafted a letter which is going to a big Govt. Dept. about discriminatory treatment I received in one of their major professional offices due to this condition I suffer. Unlike obnoxious people in the street Govt. departments employing obnoxious professionals, who deal with millions of people including children, can just re-educate their people to cover all disabilities.

Jan 17, 2012, 4:41:00 AM
Maria de la T., Founder and Executive Director, MEBO Research said...

Thanks for trying to make a difference. If there is anything MEBO can do to support your efforts, please email me at maria.delatorre@meboresearch.org.

Jan 17, 2012, 9:59:00 AM
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