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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)

Upcoming get-togethers


Let us know if you want a meetup listed
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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)

Friday, November 16, 2012

Please join today's email Raising Awareness Campaign


CHILDREN IN NEED DAY

PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.

A word from Karen James

I HOPE SOME OF YOU JOIN IN THIS CAMPAIGN TODAY-ESPECIALLY IF YOU LIVE IN THE UK.

Today is Children In Need Day in the UK. Children and teenagers who develop odour disorders are most definitely in need and suffer much more than those of us who developed the disorder as adults.

Nobody will give us a cure without us asking for it, so let's ask for it-it's just writing one e-mail and sending it to the contacts on the list (especially RCGP contacts)

COME ON!!!!

We could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

  • Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
  • Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
  • Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
  • There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

Another example of what could be written:


You are getting this email because your public service work allows you to do something about the terrible disease TMAU (Trimethylaminuria). You have the ability to help patients!
Many children suffer from TMAU with no improvement in diagnosis, treatment, therapy, and furthering of scientific research.
Sir Bruce Keogh is currently encouraging doctors to stay up-to-date with current medical developments. TMAU is one of them!
Please do whatever in your power to:
  • Raise Awareness to General Practitioners
  • Raise Awareness to the General Public
  • Assist children/patients that have been bullied and ostracized
  • Provide informative leaflets and posters about the disease to the general public and in the UCL Neurology Hospital
We need your help to do something.
Now is your opportunity.



Royal College General Practitioners

circ@rcgp.org.uk

chair-circ@rcgp.org.uk

chiefexecutive@rcgp.org.uk

president@rcgp.org.uk

chairman@rcgp.org.uk

vicechair@rcgp.org.uk

chair-scottish-counc@rcgp.org.uk

nedmunds@rcgp.org.uk

chairmanni@rgcp.org.uk

international@rcgp.org.uk

ppgchair@rcgp.org.uk

NSparrow@rcgp.org.uk

rpalmer@rcgp.org.uk

doliver@rcgp.org.uk

pnewman@rcgp.org.uk

swest@rcgp.org.uk



Royal college of Physicians

Humphrey.Hodgson@RCPLondon.ac.uk

education-courses@rcplondon.ac.uk



General Medical Council

education@gmc-uk.org

gmc@gmc-uk.org

publicatons@gmc-uk.org

gmctoday@gmc-uk.org



Medical Research Council

Linda.Willmott@headoffice.mrc.ac.uk.



NPSA

enquiries@npsa.nhs.uk

queries@nres.npsa.nhs.uk





Health MPs

lansleya@parliament.uk

simon.burns.mp@parliament.uk

dhmail@dh.qsi.gov.uk

anne.milton.mp@parliament.uk



Dental Orgs.

enquiries@bda.org

dentalbranch@dhsspsni.gov.uk

wag-en@mailuk.custhelp.com

fgdp@rcseng.ac.uk

editor@badn.org.uk

THANK YOU ALL FOR YOUR FINE WORK!

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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