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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

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

Blog Archive

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)

Monday, June 14, 2021

Lauching MEBO COVID-19 Back-To-Normal Clinical Trial

THE COVID-19 BACK-TO-NORMAL STUDY

REGISTERED IN CLINICALTRIALS.GOV
Survey in English
eConsent in English
Survey en español
Conentimiento electrónico en español

See above-noted documents for privacy commitments

Our MEBO Scientific Director and Founder of Aurametrix, Irene Gabashvili, PhD., has developed and registered a Clinical Trial sponsored by MEBO Research, including MEBO US, MEBO UK, and MEBO Africa, with the collaboration of Aurametrix. The Application and (Protocol #20210103MEBO) Narrative with all applicable attachments were approved by the MEBO Research Institutional Review Board (IRB). This study is supported by both, the Office of Human Research Protections (OHRP) and the US Food and Drug Administration (FDA), as well as the Office for Civil Rights.

This study raises the question about the effects of COVID vaccines on people with odor conditions worldwide compared to people who don’t have odor conditions. It not only looks for intensity levels of odor symptoms, but also for other short-term and long-term reactions, i.e., skin rashes, greater fatigue than prior to the vaccine, intensity levels and increase in allergic reaction, immune reactions, neurological symptoms, such as tingling sensations, muscle cramping, headaches, etc., and how they compare to the general population that does not suffer from odor conditions. If there are differences, it might open the window to further research in hopes to better understand whether these difference can lead us to a greater understanding of odor conditions in general.

As noted in the ClinicalTrials.gov site, Detailed Description of the "COVID-19 Back-to-Normal Study,"

Detailed Description: The outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was declared a Public Health Emergency of International Concern in January 2020 and upgraded to pandemic in March 2020. First vaccines to prevent COVID-19 were authorized for emergency use in the US in December 2020, but a number of unknowns still remains. One of these unknowns is the relationship of the microbiota, gut dysbiosis and impaired metabolism with active immunity to pathogens and vaccines and tolerance to antigens. Study groups will be based on age, metabolism and self-reported symptoms. Data will be collected continuously via surveys and investigator-participant interactions, as needed. Statistical methods used will be the ones with the greatest power.

Why is this study significant for the MEBO community?


MY PERSONAL OPINION
Since 2009, the 4 Clinical Trials that MEBO has carried out has addressed the microbial basis of systemic malodor and PATM conditions, explored the relationships between malodor and urine metabolomes as well as volatile organic compounds in alveolar breath, which may shed some light on the relationship of the microbiota, gut dysbiosis and impaired metabolism with immunity to pathogens and vaccines and tolerance to antigens.

Comparing comminalities and differences in the data between sufferers and persons who do not suffer from odor conditions/PATM might give our experts a greater understanding of why some people have a greater tendency towards having an odor condition than others. Perhaps the experts might be able to more clearly identify what contributes to or causes some odor conditions.

your participation is entirely voluntary and you have the right to withdraw at any time throughout this process, as noted in the eConsent.
The study is estimating to enroll 1,000 participants, and we hope to include a significant number of MEBO participants to be able to acquire a stronger based data on how sufferers of odor conditions/PATM reacted to any and all COVID-19 vaccines, compared to non-sufferers. Please participate by asking for a MEBO ID# from maria.delatorre@meboresearch.org to proceed to take the 16 question survey in English or in Spanish.

What outcomes will be measured:


Primary Outcome Measures :
1. Adverse reactions/events [ Time Frame: 10 days post-doses 1 and 2 ]
Percentage of occurrence, types, duration and severity of adverse events occurring within 10 days post-doses 1 and 2

Secondary Outcome Measures :

1. Long-term adverse events [ Time Frame: Throughout the study period, until 12 months post-final-dose ]
Percentage of occurrence, types, duration and severity of adverse events throughout study period
2. Percentage of participants with COVID-19 Disease [ Time Frame: From 14 days after completion of the 2-dose regimen up to 12 months post-final-dose ]

Please note that your participation is entirely voluntary and you have the right to withdraw at any time throughout this process, as noted in the eConsent. The more people in our community from around the world volunteer to take part in this study, the more data our scientists will have at their disposal to more effectively carry out research that we hope someday will provide us with one or more treatment options, and someday, hopefully, a cure.

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María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.meboafrica.org
www.meboresearch.co.uk
MEBO's Blog (English)
El Blog de MEBO (español)


A EURORDIS and NORD Member Organization

2 comments:

Unknown said...

Estoy dispuesto a participar siempre y cuando no se revele mi identidad.
También deberían de alentar a todos los de la comunidad que sufren de diferentes tipo de malos olores a participar para que haya más resultados de este ensayo clínico, entre más personas participen es mejor,estés mi punto de vista, también hace falta que nos dirijan para tratar de hacer algún tipo de conciencia al mundo sobre este tipo de henfermedad

Jun 15, 2021, 8:12:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Gracias por tu comentario. La máxima prioridad de este ensayo es proteger la privacidad de cada participante. Consulte el Consentimiento electrónico para obtener más detalles al respecto. http://bit.ly/BTN-consent-esp
y el Protocolo #20210103MEBO.
https://docs.google.com/document/d/1ARXDCOue177HaYUfMBcZF17AOwq5F9J-aNlI59o1Yn4/edit

Thank you for your comment. The utmost priority of this study is to protect the privacy of each participant. Please refer to the eConsent, http://bit.ly/BTN-consent and Protol #20210103MEBO for further details.
https://docs.google.com/document/d/1ARXDCOue177HaYUfMBcZF17AOwq5F9J-aNlI59o1Yn4/edit

Jun 20, 2021, 12:05:00 PM
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