Admin Control Panel

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

Labels

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)

Friday, September 25, 2009

British TV programme looking for potential TMAU tester

The new UK trimethylaminuria website, tmau.org.uk , has been contacted yet again about a media opportunity for a volunteer in the UK. The owner writes on this page on the tmau.org.uk website ...

Channel 4 to feature TMAU

Channel 4 to feature TMAU. WE NEED YOU to volunteer

I have been contacted by a TV producer who wants to feature Trimethylaminuria.

Please give it serious consideration, it would be a fantastic opportunity to highlight our cause.

Here's the email from Vicki Cooper, v.cooper@mavericktv.co.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it

I'm a producer working on the new series of 'Embarrassing Bodie's for Channel 4. Whilst I realise the title is of the series is attention grabbing, the show offers fantastic health advice and myth dispelling about things people would rather not discuss. If you haven't seen 'Embarrassing Bodies', you can watch some recent episodes on 4OD - http://www.channel4.com/programmes/embarrassing-bodies/4od and take a look at the BAFTA award winning website here http://www.channel4embarrassingillnesses.com/ We are really keen to find a TMAU case study for the new series. I am aware of the social stigma associated with TMAU - the aim of featuring a case study on Embarrassing Bodies would be to expose the myths around it and also de-stimgmatise the condition. From what I have read, there could be a lot of other people hiding themselves away unaware that they have a medical condition and many Doctors don't even recognise it. We are ideally looking for someone who is undiagnosed or has only just discovered the condition and isn't on a treatment plan yet, so we can refer them to a specialist and follow their journey/improvement. Best wishes, Vicki

Vicki is very approachable and will talk through any concerns or questions you have without any commitment to doing anything.

Dr Lachmann is 'on board' as well.

Please email Vicki at v.cooper@mavericktv.co.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it , please mention this website (tmau.org.uk) when contacting Vicki.

You can also use the contact form on the website if you prefer and I will forward your messages on.

Embarrassing bodies has been running for a few series on channel 4 (one of the main free to air channels in the UK). Usually the cases take on the structure of someone going to the shows 'Dr' with an undiagnosed problem, who then refers them to an expert, and then the story ends happily (in this case, presumably with a diagnosis of TMAU and advice on the TMAU protocol). Normally each case gets around 5 minutes airtime (?). Good luck to any brave volunteers. Your place in the group hall of fame is guaranteed !

0 comments:

Post a Comment