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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)

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Let us know if you want a meetup listed
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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

Friday, October 11, 2013

Recommendations of Practitioners and Dentists: Listing and Reviews

A MESSAGE FROM KAREN, MEBO Public Relations Director

AND ANOTHER MEBO VOLUNTEER


As most of us already know, Karen has been very instrumental through the years in spearheading our Raising Awareness Campaign with significant accomplishments. She sends us the following message in an effort to encourage sufferers to recommend healthcare providers who have been helpful to sufferers.

Hi

Maria, president of the odour sufferer's charity MEBO.org, is trying to compile a list of medical practitioners/doctors/dentists who have shown a keen interest in helping their patients investigate TMAU and odour disorders. This is a brilliant idea because some of us have been lucky enough to meet helpful doctors, endocrinologists, dentists or gastroenterologists. It would be great to have a list of contacts (in different specialist areas) who know about odour conditions and are interested in helping people who suffer from them. This list could really help our community; if we need to target a specific area of research/have a query, we could possibly use the people on this list as starting points. This list could also be crucial to raising awareness.

So, if you have met a medical professional who has been intrigued by your condition and eager to help, then please let Maria have this information by filling out the Survey or emailing her directly at maria@meboresearch.org.

Many thanks

Currently, twenty names of doctors, dentists, and other healthcare providers from various countries have been noted on the list thus far. A sufferer who wishes to remain anonymous asked that her recommendation of a medical practitioner be shared with other sufferers. She recommends Dr. Patrick MaGovern, and his clinic is called Drummartin Clinic in Dublin, Ireland. His credentials noted in his website are very interesting, as he tells of his background in western medicine as he developed further skills in Functional Medicine, including acupuncture, "...medical training in allergy and intolerance, bio-identical hormone therapies, nutritional medicine, detoxification, and a basic understanding of how brain chemistry works."

The sufferer who recommends Dr. MaGovern has authorized that I use her words to explain exactly the type of physician we would like all sufferers to recommend on this list.

He [Dr. Patrick MaGovern] had never heard about TMAU before but he was very understanding, helpful and has done lots of tests for me. He did ask me to gather information on it and that he'd get me tested for it. I live far away from him so just got tested through a doctor closer to home.

The doctor's name is Dr. Patrick MaGovern. His clinic is called the Drummartin Clinic, it's based in Dublin, ireland. He has a website http://www.drummartinclinic.ie/. I choose him as he seemed to have lots of extra health services available at the clinic and he seemed like such a jolly gentleman from his picture on the website! I can definitely say after many appointments with him, that he is!

During the first appointment, he did warn me that he wasn't sure if he could help me or not but that we'd get the tests done anyway. He's got a fantastic sense of humour and there have been times that i wanted to burst out crying but he was quick enough to notice, crack a joke and make me laugh instead!

Appointments with him, tests and supplements that he suggests can all be expensive, but he has done more for me than what the less expensive doctors have done put together!

One of the tests I did was an adrenal stress profile. It was sky high and I waited for him to tell me that my odour was psychological. Instead, I was pleasantly surprised when he said the odour was causing me to be highly stressed.

Dr. MaGovern pretty much told me that he would go to the ends of the earth to help me. I honestly believe he would too, going by past appointments. I live an eight hour return train journey away from him and he suggested doing telephone consultations to cut down the costs of a train journey. Another time, he rang me out of the blue, because he thought i was taking DMSA to chelate lead out of my system and he wanted to know how i was getting on and to relay test results to me. I mean, how many doctors will take the time to ring you and see how you are?

Hope this helps someone.
Anonymous


Please help your fellow-sufferer and recommend a dentist or other healthcare provider by clicking on the icon and filling out the short Survey. Your time and effort will serve to ease the difficulty consulting with a practitioner for diagnostic testing and treatment for body and/or breath odor conditions.


María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)






A EURORDIS and NORD Member Organization 

1 comments:

Unknown said...

Grandes avanços para nossa comunidade internacional.

Oct 12, 2013, 5:27:00 PM
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