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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect TMAU

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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

Tuesday, September 9, 2008

Managing an anxiety panic attack

The most detrimental aspect of a panic attack is our thought process during the attack, which unfortunately usually only serves to escalate the symptoms. We begin to worry that our rapid heart and respiratory rates are signs of cardiac or respiratory distress, and we begin to fear that we are in a life-threatening situation.

What we need to understand to better handle our panic attacks is that these symptoms are only our bodies overreacting to what we perceive as impending danger. The adrenaline secreted is intended to give us the energy for a “fight or flight” response. That is why the heart beats faster and the respiratory rate increases, so that if there was real danger, such as a lion chasing us, for example, we would have the wherewithal to run and hide or to fight back! However, the danger during our panic attack is most probably not a lion chasing us, but possibly the social-emotional trauma associated with having a body odor condition.

So how do we cope with this physical manifestation of a pshychological state that we call a panic attack? First and foremost, by understanding that this is not life-threatening, and then to just sit back and wait until it passes, knowing for certain that this too shall pass! After we have calmed down, we can then analyze what triggered this “fight or flight” response, and deal with it as best we can to prevent future panic attacks. Remember everyone that we have each other to turn to for help in learning how to deal with these triggers of an attack.

Here is a list of ten rules for coping with an anxiety attack.


1. Remember that the feelings are nothing more than an exaggeration of the normal bodily reactions to STRESS.

2. They are not in the least harmful or dangerous -- just unpleasant. NOTHING WORSE WILL HAPPEN.

3. STOP adding to panic or anxiety with frightening thoughts about what is happening and where it might lead.

4. Notice WHAT IS REALLY HAPPENING in your body right now. Not what you fear might happen.

5. WAIT and GIVE THE FEAR TIME TO PASS. Do not fight it or run away from it. JUST ACCEPT IT!

6. NOTICE that once you STOP adding to it with frightening thoughts, the fear starts to fade by itself.

7. Remember that the whole point of practice is to learn how to cope with fear – without avoiding it. So this is an opportunity to make progress!

8. Think about the PROGRESS YOU HAVE MADE SO FAR despite all the difficulties. Think how pleased you will be when you succeed this time.

9. When you begin to feel better, look around you and start to plan what to do next.

10. When you are ready to go on, start off in an easy relaxed way. There is no need for effort or hurry.


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