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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
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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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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

Saturday, February 14, 2015

Tracy's story on life with TMAU on the Rare Disease Day website

Tracy has bravely written her story about life with TMAU on the Rare Disease Day website. This helps us all in raising awareness of TMAU to the general public. Thank you Tracey.

Click to read Tracy's TMAU story 

A quote from Tracy's article :

" I beg the medical community as a whole do not allow this lack of awareness, support or advances to continue – nobody deserves this torturous segregation. I have spent my life in hiding not wanting to inflict my hell on anyone else. I apologise for the lack of any positivity but doctors, counsellors, everybody needs to understand how really bad it is because just saying you smell doesn’t seem to cut it. I want to smile a lot more, laugh a billion times more and just be able to say I am happy. There’s nothing else to do but be here and I don’t want to simply remain this way. "

You can read Tracy's full TMAU article on the Rare Disease Day website :  click here

Rare Disease Day is 28th Feb
You can write your own article on living with TMAU on the Rare Disease Day website : Tell your story

6 comments:

Anonymous said...

She is telling it like it is.

Feb 16, 2015, 4:24:00 AM
Anonymous said...

She is telling it like it is.

Feb 16, 2015, 4:25:00 AM
Anonymous said...

THERE ARE SO MANY PEOPLE WHO WANTS TO END THEIR LIVES BECAUSE OF THIS CONDITION, AND YET THE MEDICAL COMMUNITY IS STILL NOT LISTENING OR HEARING THESE PEOPLE'S CRYS, ITS JUST SAD.

Feb 19, 2015, 10:38:00 AM
rurichek said...

I like the essay. It says everything that I feel. I can't add anything more.

Feb 19, 2015, 10:15:00 PM
Anonymous said...

Le agregaría que somos tratados como si fuéramos delincuentes

Mar 5, 2015, 8:19:00 PM
Anonymous said...

Hola a todos. Este es sólo uno de tantos miles de personas que sufrimos esta desagradable condicíón y tenemos que sufrir a diario desprecios, burlas, asco, y muchas cosas más. Cuántas personas como Tracy estamos pidiendo a gritos alguna medicina o tratamiento. Por favor, no somos pocos, habemos mas gente en el anonimato sin saber que hacer sufriendo y pensando a diario que quitandonos la vida solucionamos tanto dolor sicológico... Gracias, necesitamos ayuda.

Mar 9, 2015, 8:06:00 PM
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