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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

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)

Thursday, March 17, 2016

Cassie TMAU documentary on UK TV 24th March

TMAU Activist Cassie Graves on UK TV next week
Thursday 24th March, 8pm , Channel 5
Cassie allowed filming of her TMAU diagnosis journey last year

Update : watch Cassie TMAU video in this post 

Cassie Graves has done a number of high-profile media TMAU articles to raise awareness, including an article in the most read online newspaper website The Daily Mail . Last year she allowed a TV production crew to film her on her 'TMAU diagnosis journey'. The story will appear on UK TV next week. It looks like it will be 1 of 3 stories intertwined over an hour.

UK Channel 5
8pm Thursday 24 March
MEDICAL MYSTERIES : Series 1 Episode 1
THE WOMAN WHO SMELLS OF FISH
Channel 5 live (UK only ? ) : Link
Other Channel 5 live (UK only ?) : Link2

Post from Cassie this week in the MEBO private Facebook group

Been out of the loop for a while because I'm getting myself forward in UK politics and just started at university.

My life has had a massive overhaul, I'm on anti-depressants, in therapy, and I've quit music, and I've kind of tried to keep focused on my civil rights lately.

But I just wanted to let you lovely lot know that on March 24th at 8pm in the UK, I will be on Channel 5. The documentary I filmed last year filming my diagnosis journey will finally be airing, and despite being a minor-ish story, the episode has been named after me (which I found kind of amusing).

So if you can/want to, those are the details. I don't watch myself on screen, so I won't be watching it for a while (also I'm at a political meeting that evening), but I did film it to spread awareness

Cassie is already in the TMAU 'Hall of Heroes' along with Camille, Sandy, Arun, Cheryl Fields, Karen, Ellie, Claire, and the others who have appeared in the media including Youtubers, to raise awareness of what must be the most embarrassing disorder and is still unknown to probably 99% of Health professionals and public. Thank you to Cassie and all of you. We are in your debt.

Links :
Cassie on Twitter
Cassie on Youtube



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A EURORDIS and NORD Member Organization

1 comments:

Anonymous said...

Just watched this now on tv. Great Job.

Mar 24, 2016, 5:36:00 PM
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