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MEBO TMAU TESTING CURRENTLY SUSPENDED INDEFINITELY

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 Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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BO Sufferers Podcasts

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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

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Blog Archive

London TMAU meeting with Prof Liz Shephard
19th Oct 11am - 1pm
St Mary's Hospital
Praed St, Paddington
London W2 1NY
click to read more
more details : karen.james@meboresearch.org

MEBO Research Clinical Trials

Click here to read details of the MEBO Clinical Trials
NCT03582826 - Ongoing not recruiting
Microbial Basis of Systemic Malodor and PATM Conditions (PATM)
United States 2018 - ongoing

NCT02683876 - Completed
Exploratory Study of Relationships Between Malodor and Urine Metabolomics
Canada and United States 2016 - ongoing

NCT03451994 - Completed
Exploratory Study of Volatile Organic Compounds in Alveolar Breath
United Kingdom and United States 2013 - ongoing

NCT02692495 - Completed
Evaluation of Potential Screening Tools for Metabolic Body Odor and Halitosis
United Kingdom 2009 - 2012

Thursday, November 15, 2012

Tomorrow, NOV 16th, Raising Awareness Campaign Email Drive


A MESSAGE FROM KAREN JAMES
MEBO PUBLIC RELATIONS DIRECTOR


Gentle Reminder on November 16th:
Raising Awareness

Hi all,

We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

It is also 'Children In Need' fundraising time in the UK so I will re-word my e-mail to emphasise the fact that many sufferers of odour disorders are CHILDREN and that their social developments are seriously damaged by odour conditions.

In the USA people are sending letters of protest about proposed cuts to funding for rare disorders. Please see MEBO Research website for the NORD letter being sent in protest to these cuts and take action! Our disorders are considered 'rare' and any research to help us will take place under the umbrella term 'rare disorder'.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

Tomorrow, on NOVEMBER 16th 2012, 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


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


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A EURORDIS and NORD Member Organization 

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