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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

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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

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MEBO survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

Wednesday, January 30, 2019

UK MP will write to Health Minister about TMAU

A UK MP will write to the UK Health Minister about TMAU.

rareconnect TMAU forum member tmauuk has been very active in contacting people, organisations and companies who may be able to help the TMAU cause. This includes politicians (recommended for everyone try, e.g. contacting local representetives about TMAU).

In the UK the political system is set up thus :
1. Each contituency elects an MP.
2. Biggest party forms the Government.
3. Leader is PM.
4. PM appoints Ministers.

tmauuk reply from an MP on TMAU
tmauuk wrote to an MP and this was the reply (permission given to post this) ...


Thank you for taking the time to inform me about Trimethlymauria ( TMAU ). I have tabled a written question on your behalf !

To ask the Secretary of State for health and social care, what assesment he has made of the adequacy of Funding into research into methods A) Treating B) Curing Trimethlymauria.

I will of course let you know the answer.

I shall further consider how I might help you in raising awareness of this condition after receiving the sos reply!

Please keep my informed about any more developments and Thank you again for bringing this to my attention.


This is a milestone in the history of Metabolic Malodor disorders, as currently 99.999% people have not heard of it, and the health systems do not care.

It is recommended to write to politicians, as they put pressure on the health systems management.

link : rareconnect TMAU forum 




How democratic systems tend to work.

1. They tend to want you to write your local rep about an issue.

2. That said, another option is to contact reps you think will be sympathetic (e.g. UK Carol Monaghan MP and Nicky Morgan MP ... as they are sympathetic to Chronic Fatigue Syndrome) ... but they are not 'duty bound' to reply, so probably won't. An idea may be to look for reps who are sympathetic about CFS.

3. Write to the Health Minster

Example Template of a letter (can be used, altered etc).


Dear

I wish to draw your attention to the disorder Trimethylaminuria and the concept of 'benign' Metabolic Malodor conditions.

I suspect many suffer from this and currently the Health System works against us or does nothing or pays lip service (perhaps for funding).

Much could be done now for our community, including perhaps even cures.

On the subject of BO/Halitosis, why not have a specialist BO/halitosis center, as any type causes misery for sufferers and, for those working ... for fellow workers ?

There are a number of ways you could help :
Examples :
Write to Health Minister on my behalf.
Ask a question orally to the PM or Health Minister in the chamber.
Ask for a debate.
Start an All Party Parliamentary Group.
Or whatever other way you think possible. 

Here are 2 recent petitions on the subject :
UK : https://petition.parliament.uk/petitions/231927
International :  https://www.change.org/p/donald-j-trump-tmau-research-funding

Perhaps you can meet me to discuss it further, and/or reps from our community

Any form of pressure on politicians is an important way forward.


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A EURORDIS and NORD Member Organization

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