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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

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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