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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)

Saturday, June 2, 2018

'smelly' passenger removed from plane : Karen writes

A Transavia airways passenger was removed from a plane due to complaints about his 'malodor'.
The plane diverted to remove him.
The story made international headlines.

Here is is in the UK Daily Mail : Smelly passenger removed from flight

It's not known if his malodor was metabolic caused, or a  surface issue.
If it was metabolic, sadly the opportunity to raise awareness of METABOLIC MALODOR is not furthered in this article, although trimethylaminuria was mentioned in the comments, which some might see.

Excerpt from article

An airplane full of tourists was forced to divert after a passenger's foul-smelling body odour reportedly caused those around him to vomit and faint.
The Transavia Boeing 737 took off from Schiphol Airport in the Netherlands for Gran Canaria, but instead it touched down in Faro, Portugal.
At one point, flight crew reportedly tried to quarantine the 'unwashed' man in a toilet before the pilots decided to divert the flight.  
MEBO's Karen James feels strongly about the treatment in such cases.
Here is a message Karen sent in her recent email newsletter.

Another horrific discriminatory incident on an aeroplane. Please take the time to contact some airlines. I admit it is quite difficult to get email addresses for most of them, but please try. I have included a few contacts below after a very long time searching.

I also suggest that we purchase bracelets from IDA. If we can't control our odours, then we must protect ourselves from discrimination when travelling on the grounds of invisible disability. https://invisibledisabilities.org/

please use my sample e-mail message at the end of this message if you wish, and you can distribute this info on secret facebook groups etc.

SAMPLE MESSAGE

Hello,

I would like to request that air stewards and Airways staff are trained in being aware of invisible disabilities including incurable metabolic malodour spectrum disorders such as Trimethylaminuria ( https://www.nhs.uk/conditions/trimethylaminuria/), which results in the sufferer emitting a pungent odour which is NOT connected to personal hygiene. In light of the discriminatory, ignorant and insensitive actions of United Airlines,
https://www.msn.com/en-gb/news/world/nigerian-woman-kicked-off-united-flight-after-white-man-complained-she-was-%E2%80%98pungent%E2%80%99-suit-says/ar-AAxbbuz?li=BBoPWjQ
and Transavia Airlines,
http://www.dailymail.co.uk/travel/travel_news/article-5790829/The-unbearable-stench-unwashed-man-forces-Transavia-airliner-divert.html
our community is very worried that travelling with this condition could result in trauma and humiliation. Could you please ensure that sensitive treatment of metabolic body odour sufferers is included in your customer service inclusion training and policy.


SOME CONTACT ADDRESSES

https://www.britishairways.com/en-gb/information/help-and-contacts/contact-us

Transavia:  WhatsApp: +31613533850.

customer.relations@fly.virgin.com

customer.relationsuk@alitalia.it

customer.relations@norwegian.com

tell-us@qatarairways.com.qa

https://www.united.com/web/en-us/content/Contact/customer/default.aspx?POS=US

https://www.easyjet.com/en/help/contact#

Johan.Lundgren@easyJet.com

peter.duffy@easyjet.com

ian.cairns@easyjet.com


Other possible actions

Write to local national politician about it
(e.g.
UK : MP
USA : Senator, congressperson)

In comments, mention TMAU in the top comment thread
daily mail top comment

In common, green arrow the highest ranking comment mentioning TMAU
highest ranking TMAU comment

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A EURORDIS and NORD Member Organization

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