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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
EURORDIS and
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

Thursday, September 4, 2014

MEBO TMAU Test Program Results: BATCH #11

Click on icon

a  PATIENT ADVOCACY International campaign to research SYSTEMIC BODY ODOR AND HALITOSIS

A 501(c)3 Public Charity, USA
A Not For Profit LTD Company, England and Wales

The results of Batch #11 of the MEBO TMAU Test Program were received from the lab. In this batch, there were a few sufferers who decided to take advantage of the $100 plus round trip shipping rate offer for their second test. The benefit to doing a follow-up test is that one can better measure the effects of the TMAU odor-management protocol on TMA levels.

Living with an uncontrollable odor condition and getting a NORMAL TMAU test results can cause feelings of depression.  It is normal to feel overwhelmed when receiving a TMAU test results that indicates that a sufferer does not have any of the forms of TMAU, see Differential Diagnosis. It's difficult to know where to go from here because of the lack of knowledge about odor conditions in general. We yearn to define and explain it simply because we want to have control over it. Unfortunately, science is not there yet. So, what do we have to work with?

In this case, one should take some time out to be alone to process this news, and to strive to look at the big picture, as limited as it currently is. It seems that body odor and/or halitosis is produced, or greatly influenced by the following phenomena:
  1. The source of odorous chemicals (foods, gut microbes, pesticides and hormones fed to livestock or plants we eat, preservatives in foods, medicines, alcohol and other drugs, etc.),
  2. The degree of dysfunction of the metabolic enzymes responsible for the metabolism of each particular odorous chemical,
  3. The state of the organ(s) in charge of metabolizing these chemicals (the liver) and/or eliminating these chemicals from the body (cleansing organs, i.e., kidneys, skin),
  4. The environment, which produces odorous chemical, i.e., gut flora, the state of the digestive system, environmental damage to liver (i.e., hepatitis), kidney damage by environmental factors (i.e., infection, alcoholism & drug addiction), other medical conditions, etc.,
  5. Genetic mutations resulting in odor conditions.

Even though I believe in doing the TMAU test in an attempt to get some answers, I truly believe that the results either way are not the complete picture. In fact, many persons with a positive for TMAU test result cannot control their odor with the TMAU odor-management protocol (scroll down to read all posts). In my opinion, going on a low choline diet may only be scratching the surface of the problem-solution. I believe that we need to address the 5 questions above to truly get a better picture, and thus, to achieve greater control until researchers provide us with a more effective treatment, which hopefully will work not only for TMAU patients, but for other body odor conditions.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
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5 comments:

Anonymous said...

In my opinion, i really think that researchers already know,but they are just not telling, just to get more money out of these sufferers, and if that is the case, may god punish them all, but again, this is my honest opinion, i really believe something more can be done, and its a shame, because there are cures for these diseases and conditions out there, but everyone is turning a blind eye to it.

Sep 4, 2014, 3:42:00 PM
Anonymous said...

Some data is missing from this list compared to the last list. E.g. TMAO level 1007.52(#11 in last list), and TMA level 22.60 (#9 in last list) are missing. Or it may be the case that these levels belonged to the people who opted for the re-test, and their levels have decreased now, so the older values are deleted from the list.

If that is the case I would like to know what are new levels of those patients with earlier TMA level 22.60 and TMAO level 1007.52, after following the odor management protocol. Please tell me about the other cases also who opted for the re-test.

Sep 5, 2014, 4:01:00 AM
Maria de la Torre said...

You are absolutely correct, anonymous, and thanks for pointing it out to me. It seems that I inadvertently updated the list of Batches 1 thru 9, instead of the list of Batches 1 thru 10. I will correct this over the weekend and put up the new chart that includes Batches 10 & 11. Sorry about that.

Sep 5, 2014, 7:19:00 PM
Anonymous said...

Will you please let me know Maria the old and new TMA and TMAO levels of all the patients who opted for the re-test; and after how long gap they took the re-test. I hope that all of them were following the recommended odor management protocol.

Sep 6, 2014, 2:12:00 AM
Maria de la Torre said...

The gap between the first tests and the follow-up tests usually is many months to over a year and in some cases more than a year. I'm sorry, but I can't discuss further details without compromising the confidentiality of the participants.

Some first time testers also tell me that they have been on the TMAU odor-management protocol and want to see if their TMA levels are within normal range to determine whether they smell or not. Unfortunately, there was no baseline test results taken before they started the protocol, but at least the test results were normal, indicating that they did not suffer from TMA odor.

This is not to say that they are currently odor free, but it is to say that TMA is the the odorous chemical they are emitting.

Sep 6, 2014, 4:01:00 AM
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