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
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

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


SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online at no extra cost to you.
MEBO gets small commission from Amazon.


Use your credit card
to make your donation.



A EURORDIS and NORD Member Organization 

0 comments:

Post a Comment