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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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Blog Archive

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)

Saturday, June 27, 2009

Inexpensive hydrogen sulfide urine test in Europe

The main problem in systemic body odor, especially fecal/gas/sewage/garbage etc body odors, is that at the moment no such condition is accepted by the medical system and so there is no testing for it. The only real exceptions being mainly trimethylaminuria, and rarely dimethylglycinuria (although it is unknown if more than one has been positive for this metabolite).

Until a pattern is known for 'fecal body odor', the obvious test would be for testing all odorous metabolites, such as a malodourous Volatile Organic Compound Urine test. At the moment this remains unobtainable from the medical system (although very possible to do), and so sufferers have to look around for other available tests.

Interestingly, a Belgian Professor with a long interest in Chronic Fatigue Syndrome, which many fecal body odor sufferers tend to have, has come up with a connection with CFS and hydrogen sulfide (H2S). H2S has often been mentioned on this blog, and is very much a suspect yet to be ruled out in fecal body odor syndrome in particular. Some fecal body odor sufferers have mentioned smelling of rotten eggs at times, which is most likely hydrogen sulfide.

Professor Kenny De Meirleir has now launched a very inexpensive hydrogen sulfide urine test in Europe, which would seem a worthy exploratory test at this stage of understanding fecal body odor as a group, under the premise of ruling it out. It is sold through his Belgian company, Proteo Biopharma

One caveat is that perhaps the test is looking for the metabolized/oxidized (neutralized) version of hydrogen sulfide, which is hydrogen sulfate (?), whereas in people with fecal body odor, perhaps the H2S is not oxidized. At the moment we don't know what metabolite the test is exactly looking for.

The website says the test is currently at a non-profit price (see the FAQ page) and is available to anyone in many countries including USA, Canada, Japan and Australia, as well as many European countries.

It would be very helpful if any fecal body odor sufferers let the group know their result somehow, whether by email to Maria, or on the body odor forums. In the future, MeBO Research hopes to do such tests in an informal case study manner. For instance, testing 5 people for this would cost around $200.


Daily Telegraph article on the hydrogen sulfide urine test
Other Daily Telegraph article on the hydrogen sulfide urine test
Proteo Biopharma Website

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