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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)

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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, November 28, 2012

UK TMAU Petition to House of Parliament

British ? Sign the UK TMAU petition
UK Petition for the attention of the UK Government Department of Works and Pensions

A young British lady has taken the initiative to start a petition regarding Trimethylaminuria (TMAU) on the official government site for UK petitions to the legislators in the UK. Presumably only British nationals are wanted to sign the petition.

The petition is to make legislators aware of the effect of having TMAU on those who are TMAU sufferers. If 100,000 signatures could be obtained, the legislators would be likely to discuss the topic in Parliament. All details of signees are kept private.

British Nationals Sign the TMAU Petition here

4 comments:

Anonymous said...

I have just signed the petition.

This is similar to a US one:

http://www.rareconnect.org/en/community/trimethylaminuria/article/petition-to-include-tmau-in-the-social-security-compassionate-allowance-list

It would be good to get a Doctor to back the UK petition.

Nov 28, 2012, 4:49:00 PM
Anonymous said...

where do we sign that US petition ??

Nov 29, 2012, 5:12:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

The US Petition was initiated on June 12, 2011, and we obtained 454 valid signatures by March 2012. Unfortunately, this Petition became invaded by spammers to such an extend, that I was manually deleting over 100 spam signatures a day. As a result, it was closed.

I ran across another site called, WE the PEOPLE Whitehouse, https://petitions.whitehouse.gov/ where I see that people create petitions. I think it may or may not be an interesting site for us to start a new petition, but I simply have not had time to look into it. Any volunteer that would like to find out all the details about this opportunity, and to help our community initiate a Petition in this site, if indeed it is safe from spammers, please let me know. I'll welcome your volunteer work that we could coordinate together.

Thanks for your interest.
María

Nov 29, 2012, 6:12:00 PM
Maria de la Torre, Founder and Executive Director, MEBO Research said...

The initial MEBO Petition, http://www.meboresearch.org/petition.html was translated into Spanish and Portuguese in the MEBO website, and people from many countries in the world signed it. It's a pity spammers destroyed it. We can start a duplicate of it, so that in the end, we can still take advantage of the initial 454 signatures. Just a thought, if anyone would like to help with this cause.

Nov 29, 2012, 6:45:00 PM
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