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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

Scroll down and select country
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

Friday, March 25, 2011

Eliapharma analyzing first 38 samples & follow-up treatment recommendations


On March 21, 2011, Eliapharma began analyzing the first 38 urine samples received primarily from Canada and United States to test the levels of TMA in the urine, TMAO levels, and Creatinine levels. The interpretation of the results will be Primary TMAU, Secondary TMAU, or negative for TMAU. Both Primary and Secondary TMAU are discussed in an article entitled, Trimethylaminuria, in the U.S. National Library of Medicine, National Institutes of Health, under the subheading, ‘Differential Diagnosis.’


HOW WILL THE TEST RESULTS BE HANDLED

MEBO and Eliapharma will not only provide the test results, but in addition, will also provide a letter addressed to the physicians explaining both types of TMAU and the treatment indicated. The patients who tested positive for either, Primary and Secondary TMAU, can take these documents and discuss them with their physician. To facilitate communications with your physician and to allow him or her time to research TMAU, MEBO recommends that you first mail a copy of these documents to your physician before your office visit.

INTRODUCING THE USE OF A

"SECONDARY TMAU TEST RESULTS"

IN THE WESTERN HEMISPHERE

We are very excited to provide sufferers who have normal TMAO levels (indicating normal metabolic enzyme function) but high TMA level in the urine, with a Secondary TMAU test results whenever applicable. It has been customarily been the case in the Western Hemisphere to give a negative TMAU test result if the TMAO levels have fallen within normal range, thus indicative of normal metabolic enzyme function, even if TMA levels are high. This is because initially, only the genetically caused high levels of trimethylamine in urine was the focus of research attention.

As a result, body odor sufferers with high levels of odorous TMA in the urine (and perspiration, saliva, and other body fluids) were diagnosed negative for TMAU and consequently, lumped together with those who have normal levels of TMA. Unfortunately, this left the person with TMA odor to go back into society without any medical recourse, and was also frequently told to go to psychotherapy for suffering from delusions and given psychotropic drugs.

NOW, SECONDARY TMAU TEST RESULTS
should help relieve this very unfortunate predicament.



For a few years now, the Secondary TMAU test result, customarily used in the UK, has offered sufferers the same opportunity for medical treatment benefits as those with Primary TMAU. Just like the sufferers in the UK diagnosed with Secondary TMAU, the sufferer in the Western Hemisphere will now have the opportunity to be treated with antibiotics, as recommended by the following experts in their interviews and publications.

  1. Nigel Manning, Principal Clinical Scientist, Dept. Clinical Chemistry at Sheffield, Children's Hospital, England, where all NHS and some private lab's TMAU tests are done in the UK,
  2. Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, National Hospital for Neurology and Neurosurgery in London
  3. Ian R. Phillips, PhD., Professor of Moelcular Biology, School of Biological and Chemical Sciences, Queen Mary, University of London
  4. Elizabeth A Shephard, PhD, Professor of Molecular Biology Dept. of Molecular Biology, Dept of Biochemistry and Molecular Biology, University College of London, and other experts, followed by subsequent monthly to bi-monthly urine tests which invariably showing a significant decrease in TMA levels resulting from treatment.

As noted in the interviews and documents linked above as well as other professional publications, and in MEBO’s blog, it is widely recognized by TMAU experts in the United Kingdom that Secondary TMAU could very likely be a result of an overgrowth of TMA-producing bacteria in the gut. Experts explain in the blog and other professional publications that as the patient is treated with the proper antibiotics for the proper amount of time, TMA in the urine is significantly reduced, as has been repeatedly shown in follow-up urine tests.


This opportunity to obtain a diagnosis that gives a clearer and precise indication to the physician of what TMAU is, and the appropriate treatment for it, provides the patient with a better opportunity to control his or her TMA-produced odor symptoms. MEBO has been pursuing and will continue to pursue all avenues for sufferers all around the world to receive the proper diagnosis and treatment for TMAU as well as other types of body odor conditions. Now, for the first time ever, it will become standard procedure for a lab, Eliapharma, to consistently document Secondary TMAU test result to everyone qualified in the Western Hemisphere. MEBO is elated to say that Eliapharma has begun specifically testing for both, Primary and Secondary TMAU in all 38 urine samples they have received from members of our community.

MEBO Research and Eliapharma would like to thank the participants of the MEBO Test Program for testing through us. Being a research lab, Eliapharma joins MEBO in doing all possible to pursue much more in-depth testing and research into not only TMAU, but other body odor conditions as well.


A CALL FOR A “UNVIERSAL STANDARD”

OF TMAU TEST INTERPRETATION

Most sufferers from around the world are well aware that each lab arrives at the same figures of TMA, TMAO, and Creatinine levels, when testing urine samples; however, most labs in the world use a different scale to determine whether a person suffers from TMAU or not.

In fact, through time, some labs have been re-adjusting their standards, and currently determine a urine sample to be TMAU positive at a certain level in which in the past, it may have received negative results. As difficult to believe as it may be, the scientific and medical fields have had very little advancements at all regarding body odor conditions due to little research funding. Sufferers united under MEBO and other body odor organizations have had to take matters into our own hands to promote research and to raise awareness.



TESTING PLAYS A SPECIAL ROLE IN
THE RAISING AWARENESS CAMPAIGN

Through our MEBO International TMAU Test Program, we are inadvertently raising awareness in the medical community on TMAU and other body odor conditions, as well as [b]attempting to promote a Universal Standard of Interpretation of TMAU test results[/b] from all labs around the world. For this reason, to maintain consistency, MEBO and Eliapharma have chosen to follow the same interpretation test measurements used by Nigel Manning, in Sheffield, where all NHS and some private labs perform all their TMAU tests in the UK, and where both, Primary and Secondary TMAU are routinely checked. We hope that as people become excited about having the opportunity to be more precisely given either Primary and Secondary test results, and with the consequent new treatment opportunities not previously offered to people with Secondary TMAU, it may inspire other labs to begin to appreciate the benefits this diagnosis offers, and to consider following suite in our efforts to create a Universal Standard.

Many other diseases have different classifications of the same disease, such as diabetes type 1 and type 2, for example, each showing elevated sugar levels in the blood, but each having a different cause, prognosis, and treatment. The same is true for Primary and Secondary TMAU.

UNDERSTANDING TMAU TEST RESULTS AND
OUR RAISING AWARENESS CAMPAIGN

You can follow MEBO-Eliapharma test progress on the right sidebar of MEBO's blog and in related posts. Much more information about this will be forthcoming, as the test results should be ready by the end of next week. While every effort will be taken to protect the privacy of individuals, as patients take their positive results with an explanation of TMAU, and indicated treatment to their respective physicians. While each patient receives treatment for both Primary and Secondary TMAU, each medical doctor involved will learn about TMAU and other types of body odor conditions. There will be much discussion within our community in blog posts and forums, as well as in the Medical Community around the world, as part of MEBO’S Raising Awareness Campaign.

THANK YOU!

Thanks again to all who participated in MEBO-Eliapharma TMAU Test Program, thus demonstration support and faith in MEBO’s efforts to find a good and reputable research laboratory to perform these test for us. We have painstakingly taken extra measures and efforts to not only ensure that the integrity of the sample has remained as intact as possible in the collection and shipping process. The lab has include the proper amount of hydrochloric acid (HCl) for the sample to prevent bacterial growth in the urine which may otherwise result in a false positive; and the lab shipping an ice bag to maintain the specimen in a frozen state to prevent TMA from escaping as it turns into gas at room temperature, as some theories claim.

Also, the lab has painstakingly calibrated their equipment, so that we can all feel confident that the results are indeed accurate and a true reflection of the condition on urine samples from the moment collected until the bank runs the test. And without no lucrative ends, MEBO has spent countless volunteer hours to negotiate low rates with FedEx to get the samples to the lab as fast as possible from almost anywhere in the world in a frozen state, to ensure that the samples are not in the least bit corrupted by bacterial growth or TMA turning into gas.

If you would like to test in our MEBO International TMAU Testing Program, please fill the test following, MEBO-Eliapharma TMAU Test Requisition/Survey Form.

María

María de la Torre
President and Executive Director



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