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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

Tuesday, August 5, 2008

Strategy to make your Doctor aware of TMAU (Trimethylaminuria) testing options






One of the most difficult obstacles in seeking medical attention for our body odor, is to CONSULT WITH OUR PERSONAL PHYSICIAN! It is such an embarrassing thing to do, and often too overwhelming, and we end up not addressing our body odor with him/her at all. In addition, we normally already have a good rapport with our physician, thus making it even more embarrassing to bring up the topic; it would be easier if he were and stranger and someone we would never see again.

Even worse, we may fear that he would arrive at the conclusion that we are crazy and that it's all in our minds, thus somehow severing the positive bond we have with our physician to a certain degree forever! That would change the way we feel about seeing this doctor in the future for any other condition at all.

So how can we 'break the ice'? How to face and overcome this obstacle?

What about writing a short letter and (e)mailing it to him/her one week to a month before our appointment, to preparing your doctor for this encounter. This is one way to break the ice, and it could serve to give her the opportunity to research Trimethylaminuria in advance to be better informed. Below is an example of a letter you might want to send. Make sure to copy and paste it to create a Word document, replace the red wording with your personal accurate information, then sign it, and mail it to him/her.

(Your name)
(your mailing address)
(your phone Lumber)

(Date)




Dr. Soandso, M.D.
(Your doctor’s address)


Dear Dr. _____:

I have an appointment to see you on ___date______, and I would like to discuss with you a topic that is very embarrassing for me, and therefore, I am writing you this letter to help me communicate it to you. I have been told by others that I emit a very offensive body odor, which may come and go intermittently or may linger for days, and most importantly, it is interfering in my social relationships and work environment.

I have tried every kind of hygienic oral, underarm, and foot treatment…I have seen dentist, dermatologists, gastroenterologist, gynecologist, …. to no avail. I am attaching a form sent to me by the Mayo Clinic, who offers testing for a metabolic odor-producing condition, Trimethylaminuria, so that you would prescribe it for me to be tested through them. Please see the links below on information given by the National Institute of Health regarding this genetic disorder.

I would like to discuss this further with you in our appointment on [date of appointment], and I would appreciate all the help you can give me regarding this matter.


Sincerely,




(Your name)

Links to websites on Trimethylaminuria by the National Institutes of Health:
http://www.genetests.org/query?

and
http://rarediseases.info.nih.gov/GARD/QnA.aspx?PageID=4&CaseID=20839&DiseaseID=6447#78


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