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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
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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

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BO Sufferers Podcasts

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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
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See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, November 12, 2018

Crissan's Mental Health Column: Five effective Stress Management exercises

Five effective Stress Management exercises




NOVEMBER 2018

MEBO Mental Health Monthly Column
MEBO Mental Health Director
STRESS MANAGEMENT
Five effective
Stress Management Exercises

In her October Mental Health Column post, Crissan shares her insightful perspective and professional views on how sufferers can enrich their lives with meaningful relationships. She points out that there are many potential sources of fulfilling relationships that we can tap into. Now in her November Mental Health Column post, she focuses on stress management, the effects it has on the body and mind, and techniques for stress management.


In earlier articles we discussed the effects that stress can have on the body and mind. Stress is a big issue for most malodor and PATM sufferers. The fight-or-flight response can trigger a lot of physical symptoms, it increases tension in the body and stress hormones to soar. When this inborn system is turned on continuously, it can be very damaging and can even cause malodor or PATM symptoms to increase. Relaxation and stress management are thus very important for malodor and PATM sufferers. This is easier said than done of course.

Crissan's indepth article covers the following topics from the perspective of a sufferer and Mental Health Professional:


  • By increasing your awareness of your breathing patterns and shifting to more abdominal breathing, you can balance the oxygen and carbon dioxide blood levels in your body, normalize your heart rate, and reduce the muscle tension and anxiety present with stress-related symptoms or thoughts...
  • Progressive muscle relaxation is an exercise that reduces stress and anxiety in your body by having you slowly tense and then relax each muscle...
  • Mindful- Self-compassion exercise...
  • Autogenic training (AT) has been found to be effective in the treatment of muscle tension and various disorders of the respiratory tract (hyperventilation and bronchial asthma), the gastrointestinal tract (constipation, diarrhea, gastritis, ulcers, and spasms), the circulatory system (racing heart, irregular heartbeat, high blood pressure, cold extremities, and headaches), and the endocrine system (thyroid problems)...
  • Autogenic Formulas for Calming the Mind.


Crissan also recommends a workbook that depicts many more relaxation and stress management techniques. Click on icon to get information on this workbook. Shop around for lowest price.

Our MEBO Mental Health Director, is already planning her December column paper! She gives her heart and soul to lift up our community so that each has the wherewithal to find happiness and peace in life. Thank you, Crissan!


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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A EURORDIS and NORD Member Organization

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