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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

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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

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Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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)

Friday, March 18, 2011

Hotel booking special deadline for Washington DC Meetup


Tomorrow is the last day to book your suite at the MEBO rate of $89/room (not per person) per night at Embassy Suites Dulles Airport for our Washington DC meetup for 08 April 2011 - 11 April 2011. You can reserve a room without obligation using a credit card to guarantee the rate. Funds will not be held by your credit card account nor will charges be made to it until you check out after your hotel stay. You can cancel your reservations up to 24 hours prior without a penalty. For online reservations, please visit the website, http://embassysuites.hilton.com/en/e...c_id=POG#hotel and book your hotel stay directly, or call 1-800-445-8667 and give the MEBO Group/Convention Code:MER

Room rates include :
  • Complimentary daily full breakfast per person,
  • Complimentary daily 2-hour Manager's Reception, serving alcoholic and non-alcoholic beverages and snacks
  • Complimentary Dulles Airport shuttle,
  • Free self-parking.

After midnight Friday night, the rooms held for us will go back into the hotel's inventory, and you could still reserve your suite, but with regular rates and more restrictions.

I hope to see many of you there. We have a full agenda consisting of a 4 hour conference on Saturday morning at 11:00a.m., after our buffet breakfast, which ends at 10:30a.m. on Saturday, eating meals together, socializing at the Manager's Reception, and visiting sites at this beautiful city.

Our conference will begin at 11:00a.m. and consist of the following topics:
  1. Even though Dr. Cheryl Fields (Dr. Stillstanding) cannot attend the meetup in person, she has offered to do a simple conference call with a speakerphone on the table (not a webinar) during this phase of our meetup, and do a presentation on employment and/or human relations/community resources with us followed by an informal Q&A and discussion session. (approximately 1 hour or less). Additional information about the logistics of the conference call will be forthcoming.
  2. Another member will do a presentation on Dr. John Cashman's Interview posted in MEBO's Blog on the FMO3 metabolic enzymes and some its various types of deficiencies, including but not limited to TMAU, resulting in multiple types of odor resulting from different types of substrates. (approximately one hour or less)
  3. I will close the session with information on Raising Awareness Campaign, including but not limited to community members printing and placing flyers in strategic locations, and to discuss MEBO's International Testing Programs, including but not limited to TMAU, MEBO's International Program, with new testing and research opportunities MEBO is pursuing worldwide, and Glenna's Public Relations activities working closely with other body odor organizations and establishing relations with our US Senators to promote the NORD Fund, other research efforts and general raising awareness efforts. (approximately 1 hour or less)



We expect to be able to find a media that we can use that allows anyone from around the world to call in to this conference call to be a part of it. Everyone would be welcome to join us on the call, though no one would be required to speak during the call unless one chooses to do so.

María

María de la Torre
President and Executive Director



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