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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

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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
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NORD Member Organization
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, April 23, 2018

Conference Presentation by Danny Kunz



As usual, Danny Kunz most graciously provided the MEBO community with a very informative PowerPoint presentation on the Causes of Body Odor. This PowerPoint was to be presented and discussed at length at the MEBO Annual Conference, Savannah, Georgia 2018. Since we did have some technical difficulties and we were unable to hear the video, I am now presenting it here.

Discussion below on some points of interest that Danny tells us:

Histamine in the gut is bad because it has a strong impact on tight junction regulation of intestinal cells. In fact, "fecal body odor seems to be related to histamine degradation deficiency" The significance of gut wall health (tight junction regulation of intestinal cells) was discussed in the conference. Sufferers are recommended to consult with their physician if they experience prolonged allergic reactions, especially of the bowels, such as food sensitivities and/or indigestion, etc.

It is important to maintain good health of the digestive tract in the fight against odor conditions and PATM. Sufferers are recommended to consult with their gastroenterologist when experiencing any intestinal discomfort, including but not limited to, bloating, constipation, diarrhea, abdominal tenderness, painful bowel movement, hemorrhoids, rectal bleeding, etc.


It looks like histamine concentrations are highly important for the tight junction regulation of intestinal cells.

The tight junctions are important for the direct paracellular transport of electrolytes into the blood without transition through the intestinal cell metabolism.

Increased open tight junctions [leaky gut] will further lead to an increased surface area of the intestinal cells [IBS] and are as a result, a strong regulator of passing amines and their level of being processed.
http://bodyodorresearch.blogspot.com/2017/05/histamine-has-strong-impact-on-tight.html


Clinical significance of the opening of intercellular tight junctions (increased intestinal permeability), any of which may result in opening of tight junction, resulting in the passing of electrolytes into the blood without transition through the intestinal cell metabolism.

Clinical significance [Wikipedia]


The opening of intercellular tight junctions (increased intestinal permeability) allows uncontrolled passage of substances into the bloodstream, with subsequent possible development of immune and/or inflammatory reactions.[3][8]
The opening of intercellular tight junctions (increased intestinal permeability) can allow passage of microbes, microbial products, and foreign antigens into the mucosa and the body proper. This can result in activation of the immune system and secretion of inflammatory mediators.[12]
Increased intestinal permeability is a factor in several diseases, such as Crohn's diseaseceliac disease,[13] type 1 diabetes,[14]type 2 diabetes,[13] rheumatoid arthritisspondyloarthropathies,[15] inflammatory bowel disease,[8][16] irritable bowel syndrome,[9]schizophrenia,[17][18] certain types of cancer,[8] obesity,[19] fatty liver,[20] atopy and allergic diseases,[14] among others. In the majority of cases, increased permeability develops prior to disease,[8] but the cause–effect relationship between increased intestinal permeability in most of these diseases is not clear.[16][21]

For a clearer understanding of the above used terms, see illustration below:
  1. Transcellular route (pathway): The route through cells, as opposed to between the cells.
  2. Paracellular route: the route between cells
  3. Tight junction: A type of cell junction formed between epithelial cells of vertebrates wherein the outer layers of two adjacent cells fuse, thereby serving as a barrier to the passage of fluid between cells


  4. An informative site on Crohn's Disease: Verywell.com, a health & wellness site that provides simple, expert advice to 20M readers a month, https://www.verywellhealth.com/crohns-disease-4013910
-----------------------------

María

María de la Torre
Founder and Executive Director

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A EURORDIS and NORD Member Organization

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