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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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed

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)

Monday, September 24, 2012

TMAU/FMO3 webinar recording : Professors Shephard and Phillips

2ND Webinar on FMO3



This is the recording of the TMAU/FMO3 webinar that took place 23rd September 2012
Guest Speakers : Professor Elizabeth Shephard and Professor Ian Phillips
Webinar title : "FMO3 : bugs, genes and drugs"

The webinar was kindly hosted by Rob Pleticha of rareconnect.org
You can see the original post on rareconnect.org here : TMAU webinar
rareconnect.org has a TMAU community : rareconnect.org TMAU community

This is the first in a series of webinars with TMAU/FMO3 experts as guest speakers. There was also a previous webinar where TMAU sufferer, MEBO UK Director of Public Relations, Karen gave a talk on how to use the media to advance the Cause of people living with malodour disorders: Karen's TMAU talk.

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A EURORDIS and NORD Member Organization 

3 comments:

Betty Wolcott said...

This excellent webinar enabled me to do a more informed set of internet searches on FMO3.

Question: if selenocysteine can override UGA stop codes, would it work on FMO3 mutations in the same way as Ataluren to alleviate TMAU symptoms? (Selenocysteine is available on Amazon.)

Thank you so much.

Oct 8, 2012, 2:16:00 AM
blogcontributor2 said...

Hi Betty

I don't know the answer to your question but it seems that people with nonsense mutations ('false stops') usually make up a small % of a 'deficiency' community. Usually about 5-10% (and nonsense mutations are usually very severe). So even if selenocysteine worked it would only work for say 5-10% of the community.

I guess there is probably a reason it won't work anyway, or they would be using that ?

Oct 11, 2012, 9:58:00 PM
blogcontributor2 said...

Hi Betty

Professor Shephard emailed a reply to me. Here it is :

There are ongoing clinical trials for cystic fibrosis where chemicals that allow stop mutations to be by-passed are being tested. If these prove successful then such treatments could be used for other disorders caused by stop codon mutations. However, it turns out that the base sequence on either side of the stop codon are really important in how well this approach works.

No clinical trials have been carried out to show that selenocysteine will overcome stop codon mutations. Such trials would have to be done on a protein by protein basis. Because each protein has a specific amino acid order. This order and identity of the amino acids is crucial for the protein to adopt a precise 3-dimensional structure.

Oct 27, 2012, 10:15:00 AM
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