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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, July 23, 2018

Procedures MEBO Gut Microbiome Study

Instructions for 3 kits:
    Do not open the 2nd kit until you have inserted your first sample into the self-addressed, postage paid envelop and seal it, in order to avoid misplacing and confusing the samples. EXCEPTION: For international, please send 3 samples together in one shipment.
  1. Please read the Consent Form, Instructions and Procedures, and MEBO/PATM Quality of Life Test before taking any samples.
  2. Only open one kit at a time when you your odor and/or PATM conditions are active. You can follow the directions found inside the kit to collect your sample.
  3. Create an account with uBiome and activate your kit by registering your KIT ID# found on the side of the kit box.
  4. Answer the questionnaire in the uBiome site.
  5. Don't forget to also register the same KIT ID # in the MEBO/PATM Quality of Life Test and answer those questions as well.(scroll down to find the test) and answer questions.
  6. Do not open the 2nd kit until you have inserted your first sample into the self-addressed, postage paid envelop and seal it, in order to avoid misplacing and confusing the samples. For shipment of samples to uBiome within the United States, you can ship each postage paid, self addressed envelop individually.EXCEPTION: For international, please send 3 samples together in one shipment. The least costly shipping service is fine because the samples do well with regular shipment time frame. Please save your shipping receipt and send a copy of it to maria.delatorre@meboresearch.org for reimbursement of lowest shipping cost you used.
  7. After you have worked on the uBiome and MEBO/Auramentrix sites, you can put your sample inside the return addressed/postage paid envelop and take it to your local post office.
  8. SECOND KIT: Repeat all the same steps, but this time do it o a day in which your symptoms are average or a little better than average, or sustained remission. Register your kit in your uBiome account and answer questions in the MEBO/PATM Quality of Life Test in regards to the 2nd sample collection conditions.
  9. THIRD KIT: Do not open the 3rd kit until you have sealed your second sample inside the self-addressed, postage paid envelop.
  10. You can decide whether you want to collect your 3rd sample when feeling even better or worse, and follow all the same procedures.
INITIAL UBIOME RESULTS:
You will receive your initial results of each of the 3 kit in your uBiome online account. These are the typical results uBiome sends all their patients, regardless of whether they suffer from odor conditions or not.

CONCLUSION MEBO
GUT MICROBIOME STUDY
The conclusion of the MEBO Gut Microbiome Study, which involves the analysis of the results exclusively of odor/PATM sufferers who participated in the study, will not be arrived at until approximately one year after the study commenced. At that time, you could refer to your test results, and see where they fall in relation to the conclusion of the study.


Throughout this research project, updates about this research in this MEBO Blog. Scroll down to see them all on the following link, http://www.meboblog.com/search/label/MEBO%20Gut%20Microbiome%20Study


María


María de la Torre
Founder and Executive Director

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



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A EURORDIS and NORD Member Organization

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