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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
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at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


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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

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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
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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

Thursday, November 5, 2009

Cheryl's special TMAU conference call this Sunday : phoning in from overseas

This Sunday at 2pm EST there is a special conference call featuring Cheryl Marshall who was the lady on the Mystery Diagnosis TMAU episode, and who also founded the NORD TMAU Fund. Many non-USA residents are likely to be interested to hear the call, but feel it may be too expensive (which it will likely be if you use your national phone company, for example). However in most countries there are 'discount carrier' phone companies that enable you to dial a special number to connect to the USA at a very cheap price. In the UK, such an 'over-ride carrier' would be discountdial . If you have a BT connection, by using their USA number to connect to the call, you would be charged 0.5p per minute rather than 18p, and it gets added to your phone bill. If you do not use BT or use a mobile, you need to check for extra charges by your phone company.

The same will be true for most countries

So for example, someone from the UK with a BT phoneline can phone the conference call by

1. dialling discountdials USA number : 0844 200 95 95
2. then when prompted, dial the Conference call number (including USA code)
001 712 432 1620
3. then type the access code on your phone keypad: 391629#
4. you are in the conference. You will be asked to 'announce yourself' but you don't need to

discountdial's disclaimer :
The rates stated are based on standard BT rates, for all other operators please check with your provider for the rates they charge to our access numbers. Please beware that mobile operators may surcharge calls to our access numbers. Any surcharges are levied by your own operator, we cannot influence the rates charged by other operators as non BT operators set their own charges on their billing systems.
These type of cheap calls will be available in most countries if you look around. Let us know if you know of any, either here or on the bodyodorsupport forum. Always check for any hidden fees.

The call with Cheryl is likely to be very interesting. If it is busy and you can't connect, it's worth to keep trying or post a message on the bodyodorsupport forum for advice. The NORD fund only needs $30,000 to initiate research and is already at $7k. To donate to the NORD TMAU Fund go to this page and put 'TMAU fund' in the 'in honor of' section

NORD TMAU Fund donate page

Cheryl and a few others from the community have set up a website to promote fundraising for the NORD TMAU fund, rrr-tmau.org

1 comments:

Anonymous said...

Hey there Mebo .
I'd love to listen to these conference calls . They are removed from youtube now but can us members possibly hear them at some point ?
=)

jojo on skunkhugs =)

Jan 29, 2012, 3:38:00 PM
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