Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

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

Friday, March 30, 2012

Commencing the MEBO VOC Alveolar Breath Test and Exploratory Research Study

MEBO/Menssana Alveolar Breath Exploratory Study



for more info contact mike@meboresearch.org






sufferers are strongly encouraged to express interest by filling out the Requisition Form as soon as possible in order to encourage MEBO to schedule testing in their area of the world...
Test sites will be determined based on the demand in the area indicated by the amount of Requisition Forms received. If you are interested in participating in this test/study, please fill out the Requisition Form so that MEBO may consider a testing location that you can attend. An invoice with a PayPal button will be sent 45 to 30 days prior to the testing date to persons who filled out the Form, and payment must be received prior to testing. However sufferers are strongly encouraged to express interest by filling out the Requisition Form as soon as possible in order to encourage MEBO to schedule testing in their area of the world, if enough interest is indicated in that area.


INITIAL TEST SITES:

  1. Chicago, Illinois, on April 21st & 22nd, 2012
      Email: mike@meboresearch.org
  2. in Birmingham, England June 9th, 2012
  3. Miami South Beach, Florida, Annual Meetup in June 23rd & 24th.

MEBO Research (MEBO) is happy to announce the launching of our Alveolar Breath Exploratory Study. Menssana Research, Inc., (Menssana) has shipped the BCA 5.0 instrument to MEBO's Managing Director, Mike, in Chicago, and we will have use of this instrument for a period of one year. The use of this BCA 5.0 instruments was donated free of charge for one year, when normally it is leased out, by Dr. Michael Phillips, MD, PACP, Professor of Clinical Medicine at New York Medical College, Valhalla, New York, while MEBO works at obtaining as many samples as possible worldwide. If we wish to continue using it for more than a year, we would have to lease it. Therefore, MEBO will be collecting samples only through early March 2013, and the instrument must be returned to Menssana by March 22, 2013. It is our intent to make good use of this equipment by holding testing sessions as frequently as possible in as many parts of the world as we can logistically organize. Additional sites will be determined based on the demand in the area indicated by the amount of Requisition Forms received. If you are interested in participating in this test/study, please fill out the Requisition Form so that MEBO may consider a testing location that you can attend.


The cost of the test is $345/USD per person.
This amount does not cover the total cost of this study, and therefore, donations are welcome using the donate button provided below. This exploratory study will benefit our body and breath malodor community, as this is only an initial step towards discovering the causes, treatment, and ultimately, the cure for all types of body odor and halitosis conditions.

MEBO VOC Alveolar Breath Exploratory Study

NOTE: An invoice with a PayPal button will be sent to you 45 to 30 days prior to the testing date, and payment must be received prior to testing. However sufferers are strongly encouraged to express interest by filling out the Requisition Form as soon as possible in order to encourage MEBO to schedule testing in your area, if enough interest is indicated in your area.


In 2008, MEBO had identified a range of chemicals and their associated odors. Using the table below, Menssana Research Laboratory conducted extensive research utilizing their toxicology database and combing through 700-800 patients profiles to identify the higher concentrated chemicals (four carbon atoms and above) that mostly affect the community. We received the report from the Menssana Laboratory and placed the information in this table below. Dr. Phillips and the Menssana team have been very open with working with MEBO, and empathetic to the needs of the sufferer community.

The volatile organic compounds are identified through breath by apparatus provider to MEBO by Menssana. The VOCs’ are transferred to the breath via the gas exchange in the alveolar ducts within the lungs. The test will measure the level of 200 volatile organic compounds present in the breath, including those noted in the chart.

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


TESTING AND RESEARCH STUDY FORMAT
Testing will take place in groups at different locations throughout the world, depending on demand demonstration in the Requisition Forms filled out by sufferers, over a one year period. The data from individuals will be analysed by Menssana, and individual test results should be available to patients within two weeks. Testing will be carried out by trained MEBO staff, and patients are advised not to eat anything three hours prior to testing.

PRICIPLE ELEMENTS OF TESTING AND RESEARCH STUDY

  1. Identifies over 200 different volatile organic compounds
  2. Identified VOC have an associated odour, see fig 1
  3. Provides information that may enables suffers to identify dietary restrictions and an individually tailored protocol
  4. Research study will be conducted with the following hypothesis: What are the evident trends in VOC among sufferers, how do they relate to an observed normal population
  5. The ability for patients to compare results to a group with similar malodor complaints, and to a normal population.

The study of the compiled data will not commence until all individuals have been tested throughout a years times along with a normal population to compare all data collected. Comparison with an observed normal population should conclude the relevant range acceptable in the breath. Trends in deviation between patients and the normal population should give conclusions to the extent of the problem. Individual results will then only have conclusive relevance at the end of the full research study.


This research study is driven by sufferers united under MEBO Research's banner, in consultation and supervision of experts and our Institutional Review Board, to initiate formal studies to find answers to all types of body and breath malodor conditions. Its success relies heavily on the participation of sufferers from around the world in order to obtain a more accurate "picture" of our international community. The more data we compile, the greater the relevance of the results to our vast international community. Please be a part of this sufferer-driven movement by filling out the Requisition Form and committing to participate in this study, and let's show the world that we are a significantly large community who merit support in our ventures to find a cure.


María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



For additional posts on this topic, please click here:
Alveolar Breath Test/Research Study.

*Menssana Research Publications
  1. The IADR/AADR/CADR 83rd General Session (March 9-12, 2005), Prediction of Oral Malodor with Volatile Markers in the Breath.
  2. Oral Diseases (2005); 11 (Suppl. 1): 32-34. Pilot study of a breath test for volatile organic compounds associated with oral malodor: evidence for the role of oxidative stress.
  3. European Respiratory Journal (2004); 24: Suppl. 48, 467s. Volatile markers of pulmonary tuberculosis in the breath.
  4. Workshop on TB and HIV Diagnostics in Adult and Pediatric Populations, sponsored by NIH and FDA, Silver Spring, MD (June 29, 2011)
  5. Journal of Breath Research (Jan.22, 2010)Effect of influenza vaccination on oxidative sgtress products in breath.
  6. Clinica Chimica International (CCA), the International Journal of clinical chemistry and Diagnostic Laboratory Medicine, CCA10989 (May 31, 2008)Detection of lung cancer using weighted digital analysis of breath biomarkers.
  7. Journal of Clinical Oncology 2005; 23(16S): 839 S. Floor presentation at 2005 ASCO Annual Meeting, Orlando, Florida, May 16, 2005, Prediction of Lung Cancer Using Volatile Biomarkers in Breath.
  8. IOPScience, (Mar. 2, 2010). The Institute of Physics (IOP) is a not-for-profit society that provides publications through which leading-edge scientific research is distributed worldwide. Volatile biomarkers in the breath of women with breast cancer.



Or use your credit card to make your donation

A EURORDIS and NORD Member Organization 

4 comments:

baguio said...

in Birmingham, England June 9th, 2012


I just wanted to confirm that the above date is firm? As that's not now so far off, I need to book a flight (and time off work if necessary). Where exactly in Birmingham will the testing take place? Are participants given a precise time to turn up at - or testing will be carried out within a specified timeframe?


Thanks in advance for any assistance you can provide in this regard.

May 8, 2012, 4:07:00 AM
blogcontributor2 said...

Hi Baguio

I am not sure of what is planned now but I think the meetup has been switched to Manchester and the breath tester will not be in the UK until September.

Hopefully someone who knows will be able to reply soon

May 8, 2012, 4:15:00 AM
Maria de la Torre said...

Hi Baguio,

We have had to cancel the Birmingham test because the person who was going to administer the test is moving and will be unable to attend in the near future. I hope to be going to the Thames Festival Meetup in September, and we hope to be able to administer the test a day prior or sometime around that time when people would have come from out of town already for the meetup. This way, anyone interested can do both, attend the meetup and do their Alveolar Breath Test.

The exact arrangements have not yet been finalized, but this is the general idea. I will give advance notice on this blog so that those wishing to attend can make the necessary arrangements in a timely, more effective manner. Meanwhile, we will be posting in this blog more information on the study as it goes along. Thanks for your interest in this test.

May 8, 2012, 8:33:00 AM
baguio said...

Ok, that's perfect. Thanks to you both for confirming.



Kind Regards,



Baguio.

May 8, 2012, 7:20:00 PM
Post a Comment