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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


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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

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
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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

Tuesday, February 3, 2009

Emory 'Ask the Geneticist' : An example to the medical system

With the internet well into it's 2nd decade, perhaps a disappointing aspect is how little seems to have been achieved in the health field with regards online community groups of health problems (not just odor problems) and interaction and co-operation with experts. The old pre-internet structure seems to continue, with experts 'telling' those below the 'facts', and sufferers getting help by the 'trickle-down' method, being at the bottom of the food chain. With a problem like metabolic body odor and halitosis, and the reticence of sufferers coming forward anyhow, it is possibly the last health taboo problem on the net, and also still basically unknown by experts who may be generally still communicating with the public in the pre-internet fashion.

There are all sorts of ways this relationship could change (if the experts primary point of existence is to understand and solve problems), and a good example of one way is the Emory Genetics website : Ask the Geneticist. Not only have they put themselves far from the usual comfort zone (i.e. people can ask questions direct for all to see), they also rely on donations to keep it going since the health authorities didn't have the foresight to see how useful such an online tool could be and continue funding it.

This website is an example of how the internet should be. One could argue they may not have answers for each individual case, but at this point in metabolic body odor, it's a learning curve for both sides. At least they will be becoming aware, which is the first step. Also, readers can look on and become aware too. It may also initiate action from the geneticists.

The following 2 examples are to do with body odors, both to do with (possibly) Isovaleric Acidemia, which is commonly known as 'sweaty feet syndrome', because the acid smells of sweaty feet and circulates through the bloodstream then out through the pores. The experts and textbooks would likely say this is either a very serious condition, or some can be mild, and many 'asymptomatic', but my guess is that through questions on this site, it may turn out that 'asymptomatic' actually in reality have problems with just the smell, which makes their life very difficult. The first one is from a possible asymptomatic sufferer

My question is concerning Isovaleric Acidemia. I would like to know if it is possible for an adult to have this condition with minimal symptoms. I was never diagnosed as having this disease as a child but one of the distinctive symptoms of it is very similar to that which I have experienced. From adolescence on up to adulthood I have had a abnormal "sweaty sock" or "sweaty feet" odor (mainly when I sweat), I always thought it was my shoes or feet but that when I realized it was actually coming from my pores...

a 'smelly feet' odor through the skin
The second is especially interesting, because one of the main problems with body odor and halitosis, is that it is still very difficult to get useful testimony from those who suffer from the symptoms most ... those that can smell it! It would be very useful someday for such evidence to be collected, as these are the 'facts'. In this case the teacher seems to be going as far as putting scented candles in the classroom because of the student's odor. The student is probably textbook 'asymptomatic'. And also it shows the impact not just on the sufferer but the whole class. It goes to show how the government would be very wise to initiate research into the problem even if just from an economic viewpoint.
I have a student in my 2nd grade class who has IVA. My question is concerning the unpleasant odor he has because of the IVA. Some days it is bearable, but some days it is almost nauseating. We have 22 students in our class therefore it is pretty close quarters for the students; most days are very unpleasant for them. We have 2 automatic deodorizer dispensers and keep several candles lit all the time and the odor is still pretty bad. My question is---Is there any sort of medication/treatment that can help control this horrible odor?

student with sweaty feet syndrome body odor
So, well done Emory Genetics and lets hope many more institutions look into this type of website relationship.
Emory Genetics 'Ask The Geneticist' website


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