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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

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

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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)

Sunday, December 21, 2008

Vitamin B3 : The niacin flush (caused by increased blood flow and histamine release)

Sufferers of metabolic/systemic/bloodborne body odor are likely to experiment with vitamins and minerals. Most will likely at some point have experienced the 'niacin flush' after taking 10mg+ of niacin (vitamin B3), which is a tingling reaction and red blotches on the skin (as histamine is locally released). Niacin is Vitamin B3.

This post is written for those with metabolic/systemic/bloodborne (they all mean the same, in terms of end result) body odor and/or halitosis in case they ever try niacin and don't know what is happening. It's also a chance to think about niacin and what role it could have in metabolic body odor and/or halitosis.

Co-enzyme in phase1 biotransformation reactions
Niacin is the precursor for NAD/NADP/NADPH (
Nicotinamide adenine, Nicotinamide adenine dinucleotide phosphate). Judging by the graphs of drug-metabolism enzyme reactions, NADPH seems to play an important role in being the hydrogen donor for phase1 biotransformation reactions. This seems to include FMO3.

Introduction
The flavin-containing monooxygenase (FMO, EC 1.14.13.8) is an NADPH-dependent enzyme that catalyzes the oxygenation of a wide variety of compounds containing nitrogen, sulfur or other heteroatoms (Cashman and Zhang, 2006; Krueger and Williams, 2005). FMO3 is considered a prominent form expressed in adult human liver (Lomri, et al., 1992) and plays a role in processing nucleophilic drugs such as the anticancer drug tamoxifen, the pain medication codeine, the antifungal drug ketoconazole, the addictive chemical nicotine found in tobacco, and the diet-derived chemical trimethylamine (Cashman, et al., 2000; Ziegler, 2002).
http://dmd.aspetjournals.org/cgi/content/full/35/3/328
In theory, someone with a vitamin/mineral deficiency could end up with a 'metabolic disorder' the same way that someone with a flawed enzyme has, because the enzyme depends on co-enzymes/co-factors to function (i.e. what is the weakest link). At this point, we don't know if this is a factor in the typical metabolic body odor profile. hopefully someday we will. B Vitamins seem to be produced by friendly bacteria, but at this time the medical system does not seem to take this into account how important (if at all) this source is to humans.

Open up the capillaries. The histamine released causes the blotching
Niacin is also 'touted' by some as having a certain 'detox' property. It is known to open the blood vessels including the capillaries (this causes the histamine surge which causes the blotching ). Ron Hubbard (the scientologist) looked into how to help drug addicts detoxify in the 1970's and came up with a detox plan that centred around niacin, saunas, and fatty acids. The niacin was to supply blood as far as possible around the body, so that fatty tissue would then deposit it's 'toxins' into the bloodstream for removal. The idea of toxins staying in fatty tissue (and even bone) seems accepted by natural medicine, and seems common sense. If the blood is toxic and overloaded, the idea is that it dumps the excess toxins into solid tissue to keep the blood as 'clean' as possible, and probably leaves it there as the onslaught never stops. This is why people are expected to feel bad at first with detox, although it could be more than that for metabolic body odor sufferers (such as dysbiosis die-off). Hubbards detox program seems to be a niche 'detox program' so it can't be recommended. Also, unfortunately for metabolic body odor sufferers, it's possible there is a metabolic weakness, and so you can never tell how such a person will react to things that are good for 'normal' people. At this point we don't understand the syndrome, so no advice or recommendation can be given. B vitamins are usually methyl compounds.

Perhaps someday we will have a general idea of the metabolic body odor sufferer B vitamin profile.

Niacin - causes the 'niacin flush' at high levels. The blotching is due to histamine. Opens up the capillaries and supplies blood to peripheral areas.
A precursor for NAD/NADP/NADPH, which is a co-enzyme in many phase 1 drug-metabolizing reactions

related links:
http://www.detoxacademy.org/detox_basics.htm
Ron Hubbard (scientologist) famous book on his 'niacin flush' detox program for drug addicts : clearbodyclearmind.com
Healthy.net : Elson Haas article on niacin
http://en.wikipedia.org/wiki/Nicotinamide_adenine_dinucleotide_phosphate

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