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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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
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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)

Wednesday, January 13, 2010

Nashville update : Webinar and Conference room provisional plans


Donations needed for Conference Room and Webinar

This March 2010 sees the inauguration of the online community Body Odor and Halitosis Conference and Webinar to be held in Nashville Embassy Suites Airport Hotel on March 20th and 21st. Originally, it was planned as just a meetup amongst community members, but now it hopes to be both a meetup and a conference, with the conference being in the form of a webinar, so that experts can speak from their homes, and so the online community can watch the presentation videos and communicate in text format from anywhere in the world.

Invitations to TMAU/FMO3 experts have been sent and so far a renown geneticist expert has said he would be happy to help if his schedule permits, and another 2 have said they would be giving a joint lecture on FMO3 genetics and best practice for coping with TMAU. The expert overseeing the MeBO-Biolab Gut Dysbiosis Study has also offered to do a presentation.

Conference room arrangements :
Pending the numbers who will attend this Nashville Webinar, it has not yet been decided if the meetings will be held in the Governors Suite, or whether one of the larger hotel conference rooms may be needed. The cost of a any of these rooms may cost from $150 to $500 a day depending on the room size. This will be determined later once the number of attendees is more accurately established. Whether to book a conference room for 2 days is also still to be decided, depending on factors such as whether the attendees wish 2 days, cost, and the potential numbers of speakers. At the moment we are proceeding as if the webinar will last one and a half or two days. After all, it was initially intended to be a meetup to promote camaraderie and support, and for attendees to also have the opportunity to have fun together.


Webinar arrangements :
The webinar format will allow experts who cannot attend to speak from their homes via a webcam and microphone (via a TV or monitor) to the attendees in the conference room and to those online to also watch in their own computers. One popular body odor & halitosis phone-conference in the US had around 80 callers about a year ago; therefore, the webinar arrangements will be based on the possibility of over 100 watching via the internet. Nonetheless, to ensure no-one is left out, it will probably be based on 500 watching or even more.

Meanwhile the group in Nashville will be watching from the conference room and will be able to ask questions to the speaker during the Q&A session after each presentation. Those on the internet will provisionally communicate their questions and comments via text chat or email.

We have yet to find the program we will need to do this, but it will probably cost us between $50-$100 (or more) for the shortest subscription (one month). The viewers will be able to watch for free, though donations will be accepted. One candidate program is dimdim webinar but it has not yet been determined as other possibilities will be explored. Dimdim uses flashplayer and can be watched without the need to download anything. We will probably do a trial run of a webinar in late February/early March so that anyone interested may join to get the hang of it. It's hoped the Nashville 2010 webinar will encourage future webinars.

Things we think we will need for the conference room :
  • A table (to put the TV/Monitor on)
  • A wireless mic (so the host and those in the room can speak to the speakers)
  • Possibly sound speakers
  • A TV (if it has a computer monitor socket) or monitor
  • A laptop (probably 2)

Webinar program basic needs :
  • 500-1000 viewer capacity
  • 3,4, or 5 cameras and mics enabled (maybe 2 minimum)
  • Can record video (with speakers permission. Any permitted video would be freely available on the blog and MeBO website. No sufferer wouild appear wihtout permission)

Donations :

For the above objective to come to fruition, it was suggested that anyone interested may donate to a ring fence 'Webinar Fund'. The proceeds of this Fund will be used exclusively for the rooms used specifically for the conference and the technical equipment used.

The easiest way to donate is to go to your paypal account and send money as a 'gift' to :







webinar@meboresearch.com (send as a gift)

Other donation avenues may also be used; and to do so, you may contact María at, maria@meboresearch.com to make those arrangements.

2 comments:

Anonymous said...

I would have preferred to just have the meetup with other members only but one day with experts is acceptable. My problem with the so called experts is that there are no experts in fecal body odor and when the experts have the floor, they are quick to dismiss our concerns by saying something to the effect that there aren't any disorders other than TMAU that cause odor and plough ahead to a topic they know and can discuss. Furthermore, the only experts will probably be for TMAU which is already a known condition with treatment and the rest of us who do not have TMAU but still have fecal body odor will be ignored.

Jan 15, 2010, 5:34:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

Anonymous, I must say that I have felt the same, especially initially, as I believe it to be so much easier to organize without a webinar and more relaxing a process. However, when I think of all the sufferers from around the world who may never be able to join us in a meetup, and when so many have asked we invite experts so they can figure out how to reduce their odor, I took the more difficult road. By doing a one day webinar, all sufferers from around the world could join in and be a part of it. We will still have Friday and Saturday evenings at the 2-hour Governor’s Reception followed by dinner and Sunday to bond as a group in a traditional meetup style. We will leave our meetup with a heightened sense of being an close-knit international community of sufferers, with a stronger sense of unity between experts and sufferers, and hopefully with greater knowledge.
María

Jan 15, 2010, 6:14:00 PM
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