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

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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
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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

Wednesday, February 13, 2013

Teen invents diagnostic test for pancreatic cancer

This is an article about Jack Andraka and his recent invention; a simple diagnostic test for early stage pancreatic cancer. It shows that even for very serious illnesses, there are still huge gaps in what has been achieved and what opportunities there are out there especially in the internet age.

Usually in the metabolic malodor community there is an anosmia to the person's own malodor problem, a 'quirk' which often the person's 'loved ones' also share (anosmia to the malodor). In the 5th TMAU webinar hosted by; George Preti PhD mentioned that even after a choline load only about 10% of those with TMAU 'smelt' to the hosts at Monell. So it shows how metabolic malodors can be 'evasive' even when a known challenge test for TMAU is used. This is probably why metabolic malodors have eluded society and medical system in general, and so diagnostic tests and methods of monitoring metabolic malodors are a great need in the malodor community. 

A great need in the malodor community are reliable methods to diagnose and monitor the condition, preferably inexpensively and easily. Currently no such method exists for the malodor community other than the lengthy and relatively expensive TMAU biochemical and genetic tests. So it is very uplifting to see the recent news of a 15 year old boy coming up with a simple diagnostic test for pancreatic cancer that is inexpensive accessible and simple. He came up with a biomarker to detect pancreatic cancer at an early stage, which is remarkable when you think of the millions of dollars that goes into the medical system for research. It goes to show that even today there are ways of coming up with simple solutions for diagnosis of disorders. And of course he must have used the internet to find experts to help him develop his test, in this case a Professor at John Hopkins University. So using the internet for contacts was important. It is also noticeable he managed to get the patent.

Probably in the future the ideal scenarios for the malodor community would be a hand-held affordable and small electronic nose that can detect volatiles (perhaps even using a cellphone as the platform). Or perhaps urine test strip papers but perhaps this latter concept has been superceded by the e-nose concept.

Forbes : Teen wins $75,000 prize for cancer test
Daily Mail article
Wikipedia : Jack Andraka video
Forbes :  Jack invited to State of Union address


Anonymous said...

If you have an odor that people can not smell and you need a device to detect the odor than what is the problem????? Maybe tmau does not cause odor detected by people and is not life crippling......maybe wevneed to focus ore on those testing negative for tmau, those with odors detected bt the human nose criplling their lives despite proper carefull attention to hygiene....thank you to this young inventor.

Feb 15, 2013, 8:05:00 AM
Maria de la Torre said...

According to the statistics of all tests done in the UK from 1997 to 2012, which we have received from Nigel Manning, the Principal Clinical Scientist, Dept of Clinical Chemistry, Sheffield Hospital UK, approximately 30% test positive for Primary or Secondary TMAU, This means that you have missed 20% of persons who emit an odor that a significant amount of human olfactory systems detect for the sufferer to be concerned, which you have missed. It is important to note that this Sheffield lab has one of the most, if not the most restrictive reference range for normal levels than labs in the US and other countries that tests for TMAU. It is also important to note that most if not all persons diagnosed with TMAU, have been told by a family member, doctor, or stranger, that they do not smell, and that it’s all in their heads.
In regards scientific literature on the sensitivity of human olfactory system, the age for optimum olfactory capacity is around 33-34 years, since it is at this time that the olfactory sensitivity is still sufficiently intact. There is a decline in olfactory sensitivity starting in the thirties. Therefore, I can’t detect odors in my late 50s as I used to in my 30s. In fact, hormonal changes in pregnancy while I was in my 30s produced in me a hyperosmia that made my daily life very difficult with strong reactions of nausea and vomiting. While it is an “interesting” notation whether an expert, or anyone else for that matter, detects the odor or not, it is most certainly not scientific enough to arrive at a diagnosis or to dismiss the impact one’s odor has on his or her social life. Simply stated, the scientific/medical system need to rely on more scientific diagnostic tests and not the human olfactory system. This is because everyone’s olfactory system does not have the same sensitivity nor does on individual have the same degree of sensitivity throughout his or her life. Therefore, as a result, one’s odor may be very disruptive amongst any given social situations and not others.

Feb 15, 2013, 8:56:00 AM
Anonymous said...

I asked a question I fear even doctors will ask. Ifear with all the reports of the huan nose of researchers not detecting the odors we will be discredited. I asked for that reason not to question or discredit anyone. Thank you for responding. I read online abour an nder arm odor reported by people that researchers were unable to smell. I worry we will be discredited. I think if there was a way to test a few peole that you can smell, run a battery of tests on them to rule stuff in and out youself, not just internet self diagnosis and guessing. You test for all things yourself to rule in and out and get more answers. Could you find a way to secure funding to run a battery of tests on at least 1 person that you can consistently smell a remarkable odor from. Or meet up with more people so you smell the odors with your nose..

I have never met a single person of any age unable to smell my uncontrollable odor........or of any medical history...I would cover all cost and fly to you any where so you can smell it....

Feb 15, 2013, 10:04:00 AM
Anonymous said...

Nno one has ever told me that they are unable to smell me. People of every age can smell the odor. I can smell the odor 100% of the time. I worry about being discredited. Also if the ssdi review people are unable to smell you you will be denied sddi. Saying but my smell checker detects the smell that you can not smell, will not help. ssdi will not respect a smell checker. I understand it helps if you can not smell the odor it will detect the odor for you. But how do you know if the smell checker detects odor how do you know if peoples noses are detecting that odor not, unless you ask or listen for comments. Or is the smell checker more for diagnostic purposes????? Maybe the smell checker detects an odor so you are afraid to leave the house and stay do you know if human noses detect the smell that the smell checker does?????????? My fear is internet self diagnosis. Takingcthe ord of people online. And researchers ojly being able to smell odors from small percentages of people and not being able to smelk odors from large percentages of people. 20% of people is a small percentage.

Feb 15, 2013, 10:47:00 AM
Maria de la Torre said...

I understand why you would have this concern, as do all of us sufferers have the same concern about just how much society detects our odor. I think that smelling patients for research purposes would give interesting data of both, the capacity of the olfactory system of the person smelling, and the odor emitted by the patient. If the person who is trying to detect the odor does smell it, it is significant that this person attempt to describe the type of odor detected. Thanks to this effort as well as common-day social experiences, it has been determined that many, if not most, TMAU sufferers don’t always (usually) smell of fish, but of something else. This raises the question of whether there are other chemicals involved, and possibly other metabolic deficiencies and genetic causes of body odor, thus leading research in the right direction.

Nonetheless, I strongly urge all sufferers to not use an expert’s olfactory system as a guide to whether to test for TMAU or not to test. I base this on the fact that in Cheryl Marshall’s documentary of her experience with TMAU, her mother and husband said they didn’t detect her odor. And on the same documentary, even Dr. Fennessey in his interview said that he doesn’t detect the scent of TMA at all; instead, TMA just makes his eyes tear. So, yes, it’s an interesting question whether one or more scientists/medical doctors smell you (maybe not so interesting if they don’t detect the odor other persons detect), but I wouldn’t rely on this factor to deter me from doing the actual TMAU test.

Feb 15, 2013, 10:47:00 AM
Maria de la Torre said...

Hi Anonymous, I am finally back home, so I can reply to your comments more thoroughly. I personally believe that there are significant potential shortcomings with the use of a personal device to measure odorous chemicals, including TMA. Some sufferer would like to equate its value to measuring blood sugar for diabetics, however, I believe that they are very different. The diabetic test does not involved the widely varied human olfactory system, but instead, a very precise blood sugar level that is considered to be harmful.
What sufferers need to understand is that there is a social “window of opportunity” provided by the diverse human olfactory system, in which some people may not detect the odor when others do. So, there may very well be perfect opportunities to have a limited, yet fulfilling life with the population that has a less sensitive olfactory system. For this reason, a device can mislead and hinder the sufferer from taking advantage of possible relationships. For example, even if a range is established depicting odorous levels of a chemical, there will probably be some people who would still not detect it. Nonetheless, simply because the device indicates that it is within an odorous level, the sufferer would consequently give up the social opportunity to establish relationships with these people, thus hindering the psychosocial development of the sufferer.
I doubt very much that and social or private disability program or that an employer would allow for benefits or sick days to be awarded due to a device saying that one is emitting odor. This would make the sufferer an “unreliable employee” to his employer, when the sufferer decides whether he or she is going to go to work on a daily basis based on a device that only measures chemical levels not olfactory sensitivity levels. The solution is for the scientific and medical community to research and develop the proper diagnostic measures and the proper therapeutic to control or cure the condition to eliminate symptoms.
A device such as this would only ultimately have the strong potential to serve as a very psychosocially disruptive tool. It is my opinion that these devices have the potential of misleading sufferers towards becoming less apt to function socially in personal relationships and in employment settings, and thus, not something that a person who suffers from anxiety should use because it will simply not measure, nor could it predict, positive social interactions that could potentially take place on a daily basis,. This device may possibly be helpful only in the case of detecting extremely high levels of odorous chemicals, but those levels should then be measured and treated by a professionally trained medical doctor, not self-managed with a handheld device. Nonetheless, for sufferers who have managed to decrease their odor levels, this device has the potential of being extremely misleading and disruptive in their lives.

Feb 20, 2013, 3:56:00 AM
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