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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

Scroll down and select country
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

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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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, December 5, 2011

Breath Test for Chemicals Program Update - A Path to Empowerment


The following is a message from Mike,
Director of Finance, MEBO Research
Since we announced the Breath Test for Chemicals Study in October, we have received an overwhelming positive response from our international community. MEBO Research has absolutely loved to see all the support and interest in this study. As we move forward, we have worked with the Menssana Research Laboratory to identify, out of the 200 odorant compounds the Breath Apparatus can detect, which odorous compounds were indeed part of the overall spectrum of compounds to be detected in the breath.

It is very interesting that 60% of the molecules that have been identified as odorous will be covered, providing insight on the endogenous metabolic processes.
In 2008, MEBO had identified a range of chemicals and their associated odors. Using this list, Menssana Research Laboratory conducted extensive research utilizing their toxicology database and combing through 700-800 patients profiles to identify the higher concentrated chemicals (mostly four carbon atoms and above) that mostly affect the community. We received the report from the Menssana Laboratory and placed the information in the table below. Dr. Phillips and the Menssana team have been very open to working with our community, and empathetic to our needs.

CHEMICAL
ODOR
ORIGIN BREATH TEST (detect or highly plausible)
hydrogen sulfide rotten eggs sulfur compound, methionine
methylmercaptans rotten cabbage Yes – specifically saw ethylmercaptan, 1- (4-methoxymethyl) phenyl – and 3-Methylbenzyl mercaptan

diethyl - sulfide
rotten vegetables Yes
acetic acid vinegar phenolic compound
Yes – both pure and branched chain derivatives

phenol
medicinal, sweet tyrosine Yes – both pure and derivatives
p-cresol fecal tryptophan, tyrosine Yes – specifically 4, 6-di-tert-butyl-m-cresol

butanoic acid (other name: Butyric acid)
rancid butter fiber, histidine
Yes – pure and derivatives

butyric
sour meat
methionine rancid butter sulfur, carnitine
indole mothball, fecal tryptophan Yes – pure and derivatives
Methylamine (derivative of ammonia) fishy, pungent nitrogen compound
dimethylamine ammonia-like odor secondary amine Yes – possible derivatives

Diethylamine

secondary amine (strong odor, volatile, alkaline)

ammonia
sharp, pungent

indol
fecal
Tryptophan (indolic amino acid)

Skatole (belongs to the indol family)

fecal, pungent
tryptophan
Acetylaldehyde fruity, pungent (a product of alcohol metabolism in liver) Yes
acetone sweet, fruity, pungent
Yes
2-aminoacetophenone musky, grape-like
" " + indole wet dog
methylcrotonic acid cat urine organic acid, acid
isovaleric acid sweaty feet; strong punget cheesy or sweaty smell leucine
phenylalanine musty/mousy amino acid Yes – 4-phenylalanine – only derivatives
branched chain amino acids Sweet maple syrup smell of the urine amino acid Yes – specifically identified leucine, isoleucine, and valine

2-nonanone
Banana-like fruity
Yes
trimethylamine
fishy, ammoniacal
choline
cadaverine rotting corpse lysine
dimethylglycine fishy choline
caproic/capric acid
sour/goat like odor
short chain fatty acids Yes – pure and derivatives under synonym (hexanoic acid)
napthalene
Yes

bytyric acid
Acrid, Butter, parmesan cheese, vomit Product of anaerobic fermentation in gut
Yes – pure and derivatives
Source: Mace, J., Goodman, S., Centerwall, W., & Chinnock, R. (1976). The child with an unusual odor. A clinical resumé. Clinical Pediatrics, 15(1), 57-62. MeBO Research Blog, 2008

A match to or higher than normal levels of any of the identifying compounds would aid in the tracing of disorders/diseases and narrowly focus in on potential treatment protocols.
The chemicals listed above are not all encompassing of the breath test, but will include a broad spectrum of 200 odorants over 4C. It is very interesting that 60% of the molecules that have been identified as odorous will be covered, providing insight on the endogenous metabolic processes. A match to or higher than normal levels of any of the identifying compounds would aid in the tracing of disorders/diseases and narrowly focus in on potential treatment protocols. For any single compound, its contribution to odor depends on odor (olfactory) power, threshold (of detection) and volatility in addition to the concentration.

We had hoped the program would have initiated this month, but since we are sponsoring a multi-center study, MEBO is in the process of drafting the associated testing protocols in an effort to get the study approved by an independent institutional review board (IRB). Once we have completed this process we should be able to start the testing process, most likely in the first quarter of 2012. In order to accurately identify the number of participants and coordinate the breath testing, we ask that you fill out the requisition form. A requisition form will contain a PayPal invoice. Testing will begin early 2012 in Chicago, Miami, New Jersey, London, Australia and other locations to be announced at a later date.

MEBO has placed major efforts in contacting and establishing a relationship with scientists, researchers, doctors, and other experts to establish quality testing and research, so that our community can find answers to systemic types of odors as well as to promote a testing culture conducive to raising awareness of body odor conditions in the medical community. With the continued patience of the community, MEBO will continue its efforts in maintaining a proactive stance in finding better treatment and cures. We appreciate the strong outpour of community support we have received in this ongoing effort.

1 comments:

Anonymous said...

Hi there. Thanks for your informative post - outlining the current state of play with this wonderful initiative.

" In order to accurately identify the number of participants and coordinate the breath testing, we ask that you fill out the requisition form. A requisition form will contain a PayPal invoice. "

Where can I find the requisition form mentioned above?


Thanks in advance for your assistance.

Dec 7, 2011, 8:22:00 PM
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