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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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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

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UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :
https://meboresearch.co.uk/index.php/living-with-tmau-lwtmau-study/

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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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