Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out
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

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

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



Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


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
Post a Comment