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
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."
On Saturday, 22nd May 2010, the UK Group held a meet-up at the Tattershall Castle at the Victoria Embankment in London where they had good food, good drinks, and great company. Jan (snoopy), who organized this gathering tells us about their expirience:
Hi All,
We had a great day (and night!) out. The weather was great so we met on the top deck outside in the sunshine and enjoyed a chat and a few drinks. The boat was busy but that didn't stop us all enjoying ourselves or talking openly about our conditions, experiences and things that work for each of us in our diet and with supplements etc and swopping tips.
...thanks so much for joining us-- you were like a ray of sunshine and gave me a real boost.
There was a small group of us-- 8 in total who came and went during the meet up. We started at 1pm and the last ones standing left about 10pm ( I think I had slight sun stroke as I was bit rough the next day!) We started on the top deck and had some food etc and then had to go downstairs under the cover of shade and to cool off-- the sun was so strong that some of us got a bit sunburnt-- can you believe that in the UK! We had no adverse reactions from anyone else and just enjoyed each others company.
One of our members gave out some of the probiotic samples Maria kindly sent over for us from the Nashville meet up. We'll all be trying those out and giving feedback on how we find them. This is the the 6th time I've attended an organised meet up and not been able to detect any odour at all from anyone-- still can't really understand why that happens but can honestly say it does.
Thanks to everyone who came along for making the day enjoyable. It was lovely to have two new members attending. Natalia -- thanks so much for joining us-- you were like a ray of sunshine and gave me a real boost. Hope to see you all again in September-- everyone is welcome and hope more new members can join us.
Back in January 30, 2010 we received an invitation in a comment in this blog under this post, from Drs. Jennifer Greenberg, Psy.D., and Sabine Wilhelm, Ph.D., who invited us to participate in their survey as they were conducting a research study on Olfactory Reference Syndrome (ORS). Many in our community participated in this survey, and Dr. Greenberg and I had a great deal of discussion regarding this diagnosis as noted in this blog’s post, ‘Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey’ and Dr. Greenberg’s reply.
"What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder." Dr. Jennifer L Greenberg, Psy.D
Even though this ABC News article is profoundly upsetting in that it talks about some psychiatrists considering potentially listing ORS as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders, thus giving it greater validation, I am pleased to say that Dr. Jennifer Greenberg, stood up and gave her opinion in this article about her shift of treatment focus from ORS to OCD. This is a step in the right direction. The customary treatment focus for ORS is geared toward curing someone of a delusional condition. However, Dr. Greenberg has shifted her opinion on the treatment approach,
A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.
While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."
The patients who end up at specialized clinics such as Greenberg's, Phillips' and the OCD Center of Los Angeles often receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking.
This is an initial positive step forward with signs of having been influenced by MeBO's Raising Social Awareness Campaign as a united international community. Here's one of the comments I wrote in this article on May 28, 2010,
Thank you Dr. Greenberg for shifting the focus of treatment from trying to convince a patient that they are delusional to instead be a disorder that is closer to OCD, in which the patient is encouraged to receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking. It is very true that not everyone in society perceives their odor, so at least there is a window of opportunity to enjoy a productive social life. Unfortunately, those persons who are offended by one’s body odor would not be good candidates to socialize with, but there are those persons who simply don’t perceive some body odors.
Thanks to everyone who participated in Dr. Greenberg's survey and who wrote to her as she reached out to us to gather information. I also recommend that anyone who feels lead to do so write a comment in this article thanking Dr. Greenberg for directing her attention to our needs.
María de la Torre President and Chief Executive Officer
UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.
Below is a summary table of results of the MeBO-Biolab testers currently tested. Soon this information will be available to view on the MeBO Research website. No personally identifiable information is ever published.
I have been told I smell of poo. there is no range of smells rather very strong (a few feet away range) or very light. Problem for over 10 years. I believe certain foods trigger my smell. milk, cheese and beef are possible triggers.
Gut problems
took regucol and stomach felt terrible had to stop after a few days
Other problems
athletes foot
Trimethylaminuria
not tested
Results :
Tester 9
Gut Fermentation
No ethanol detected. Apart from acetate, the short chain fatty acids were low, which are produced by normal gut bacteria
Gut permeability
Increased permeability in 2 areas : at 242 and between 300-506
Indicans
Negative
D-lactate
16 (normal is under 60)
Vitamin B2
1.35 : Deficient (normal is less 1.20)
Tester 9 results are back from Biolab, in the systemic body odor gut dysbiosis study. In this case, the person has been suffering from a fecal odor type syndrome for a number of years. In this case, no ethanol was detected in the gut fermentation test, suggesting no yeast overgrowth in the small intestine. However many of the short chain fatty acids were low, which are produced by normal gut bacteria. The lab tester usually suggests with that profile that this could be due to poor fiber intake, diarrhea or a hypoglycemia tendency. Whatever the reason, it seems to imply a deficiency in SCFA's produced by normal gut bacteria. Once again the Vitamin B2 is deficient, making it 3 out of 3 of our testers. Gut permeability was raised over certain levels of molecular size, implying 'leaky gut'. So once again the gut-dysbiosis markers chosen showed up abnormal results although nothing can be concluded at this point.
Anyone wishing to take part in this systemic body odor or halitosis study can fill out the MeBO-Biolab body odor/halitosis gut dysbiosis survey and the process will begin. It would be especially interesting to see how those who were positive for TMAU would get on with these tests. Unfortunately, those overseas from the UK seemingly cannot do the vitamin B2 test, since the sample will likely be spoiled in transit. Testers need to pay for their own tests. The tests are seen only as a starting point for exploratory testing into possible causes of systemic body odor and halitosis.
In times of inner turmoil, I turn to a quiet living place whose palpable energy speaks to me. I try to capture it with my very modest photographic equipment, and always fail to do it justice. Nonetheless, I hope to have captured its spirit that centers me and brings me peace, so that I can share it with others.
It is with great hope in that this video may also profoundly touch everyone who watches it as it does me; I invite you to enter into this sacred place.
Many thanks to the Navajo people, especially Mylo (Myron James Begay Fowler), for sharing their 'backyard' with me, welcoming me with open arms, and showing me a glimpse of their great Nation.
María de la Torre
Places visited in this video:
Valley of Fire State Park, Nevada: Prehistory petroglyphs (near Mouse's Tank)
Systemic body odor. strong sudden sulphur odor, no physical feeling of having passed wind, no other physical sensation, just a sudden smell. Often experienced in social situations, around alot of people, situations where I am nervous/anxious/ had a lack of sleep/ situations where adrenalin is involved... For 3.5 years
Gut problems
Bloating, Constipation
Other problems
IBS, Eczema, Peanut Allergy
Trimethylaminuria
not tested
Results :
Tester 8
Gut Fermentation
High Ethanol 120 (under 22 is normal. Indicates small intestine yeast overgrowth.)
Gut permeability
No result yet
Indicans
Positive, indicating alteration of tryptophan by gut bacteria
D-lactate
15 (Normal under 60)
Vitamin B2
1.56 (Deficient) : normal is less than 1.2
The results of tester 8 in the MeBO-Biolab gut-dysbiosis study have been returned (apart from the gut permeability test result), and once again it shows a fairly high level of ethanol (in relative terms), indicating yeast fermentation in the small intestine. Indicans was also positive, which indicates alteration of tryptophan by gut bacteria, and is a crude and inexpensive test, and can imply a putrefaction action by gut bacteria (A doctor's explanation of the indican urine test). This is the 3rd positive for indicans in our study. Tester 8 is our 3rd tester since vitamin B2 was added to the survey, and once again had a deficiency as the previous 2 had. D-lactate was normal again, with only tester 2 being abnormal (possibly since they were taking probiotics at the time).
Again, we cannot say these results prove anything, and are just a limited snapshot of how testing can possibly show best what is going on in people with systemic body odor or halitosis complaints. However, hopefully they are a foundation to work on, in trying to define systemic body odor/halitosis disorders.
Anyone wishing to do the study can fill out the MeBO-Biolab body odor/halitosis gut dysbiosis survey and the process will begin. Unfortunately those overseas from the UK seemingly cannot do the vitamin B2 or d-lactate test, since the sample will likely be spoilt in transit. Testers need to pay for their own tests.
The results of tester 9 are also back and will be posted soon next week, along with the updated table of all results.
There's a body odor & halitosis meetup in London on Saturday. It is on a boat bar/restaurant moored on the river Thames 100 yards from Embankment Underground Station (on the District line). If it is a nice day, we could sit on the top deck and have snacks and drinks. If it is cold or rainy we can go to the lower deck which has great views over the Thames.
Are you going ?
Would anyone interested in coming to our Meetup please email our Meetup Liaison, Jan on snoopy3932@yahoo.com, or come on the day. About 10 are expected.
For further details you may contact Arun Nagrath on mobile 07753 492 759. He will have his phone with him on the day.
MEBO Research and Pawsibilities Unleashed, Pet Therapy of Kentucky, Inc., entered into a ground-breaking effort to develop the first ever TMAU Service Dog Program in March 2010. Where exactly this endeavor would take us was and still is uncertain; however, Liz Norris, Master Trainer, and I have had a strong gut feeling from the start that the powerful, odor-detection mechanism in a dog’s olfactory system could be of great service to sufferers individually and collectively, as persons whose lives have been turned upside down and brought to a completely hopeless standstill for years precisely due to the strong malodor emitted from their bodies. Stepping out in sheer faith with this gut feeling and believing that this program will provide our community with some, if only a few, answers, solutions, and a certain degree of hope, MEBO and Pawsibilities came together and launched the unprecedented TMAU Service Dog Program on March 18, 2010, when Liz donated our first 4-month old puppy, Vallie, to be trained for this purpose.
If we think 'outside the box', we might just find new ways to better understand our body odor conditions in a more scientific manner with the loving help of 'Man's Best Friend.'Unfortunately, due to logistic difficulties in getting a handler to be able to attend the necessary training sessions in a timely manner in Frankfort, KY, Vallie was instead given to a diabetic patient who was able to attend the training sessions at the time. Nevertheless, Liz had another dog in mind for MEBO, and hence we now have Dray, our beautiful black Labrador. Dray immediately hit it off fantastically with his new handler, who has already made three trips to Frankfort, KY to train with him. Dray has been living with his new handler for the last month, since April 19th, and both handler and Dray have been growing in leaps and bounds together in their learning process of becoming a TMAU Service Dog and his handler.
This is the latest report we have received from a very excited Liz Norris after their third week training session. In addition to many other SD services he’s mastered, Dray is now showing that he is becoming the first TMAU Service Dog ever:
Dray – exciting news/Progress Report-TMAU Service DogThis week (5/11-5/18/2010)we got our First, "Alert" on Dray's own. [His handler] walked into room with the TMAU urine scent pad in a pocket. She gave no commands and went on about her business. Dray got up, came straight to the pocket and indicated on it.....gave her a, "High 5". It was his first, "drive by" alert. In other words he took it upon himself to come to the scent, (with no command) and gave the, High 5, which means, I found the "T" [TMA] scent. Awesome progress in short time frame. This was his first automatic, "Check me".
Test Results show he can find the "T" scent 100% of the time in a room, no matter where you have it.This Weeks Homework - May 18 thru May 25th
Experiment for TMAU Urine Scent - Can Dray nail picking out 10 different TMAU urine samples from 10 different TMAU people against 10 Normal Urine Samples - this is the Goal
Dray will walk by the scent articles and do Non-Alert on the Normal Urine Samples.
Dray will, "indicate" on the TMAU urine scent samples and High 5.
What this proves: Dray can pick out a, "matching theme scent" that runs thru all the TMAU people.
Which means he should be able to take a scent sample of someone's urine, compare it to a, "normal" urine sample and tell you if either has the TMAU scent...which means he can diagnose TMAU from urine scent sample.
Teach Dray to, "Check me"
Means the dog needs to do, "drive-bys" and scent you to see if you have started throwing off this scent. If he does smell
TMAU scent he will indicate and do the Alert sign.
Teaches him this is his job and he needs to constantly be aware of and monitor your body scent for any changes, no matter how subtle.
We have received a great deal of support for this program from our community of sufferers through donations as well as from our experts, each donating in whichever way they can.
One of our renowned TMAU laboratories in the US kindly donated aliquots of TMA-rich urine from a TMAU patient who had taken a choline load, so that we may use these aliquots to train Dray. The lab described the urine samples in the following manner:
The aliquots of urine have been acidified and are 3 ml each (the last one I pipetted is less and is marked).
They are from a patient with clear TMAU who had taken a choline load.
The creatinine is 93 mg per deciliter, which means that it is a fairly concentrated urine.
The TMA is 910 micromol per mmol creatinine and the TMAO is 133 miromol per mmol creatinine.
This works out to about 7.5 millimolar TMA, which is hundreds of times higher than normal.
Along with this urine sample, the lab's representative also kindly provided us with questions for us to address while we undertake this task in order to guide us toward developing our Program in a more scientific manner as we enter this uncharted territory. These are some of the questions:
1. How does one teach a dog to distinguish the TMA smell in the urine against all the others?Possible Answers:
Dogs can separate one odor into all its components. We smell beef stew, they smell potatoes, peas, carrots, etc.
Liz says, "[Dray]should be able to take a scent sample of someone's urine, compare it to a, "normal" urine sample and tell you if either has the TMAU scent
Other ways to test for this: TMA can be collected not only in urine samples but also in saliva, perspiration, and other body secretions. The Service Dog will still detect TMA from other odors in these secretions.
2. I worry that the urine I gave you has really high levels of trimethylamine, and it may be a lot different for the dog to pick up on a sample of that urine (even diluted) than it would be for the dog to identify the smell on a person.
3.There is probably a certain threshold level in the air that makes the difference between no people noticing and a lot of people noticing, and I have absolutely no idea what that threshold is.
These questions point out how a TMAU Service Dog Program has challenges other types of SD services don’t have to address. When an SD alerts his diabetic handler to a high sugar level based on a scent the dog detected, the only concern is that the diabetic person needs to take his medication. There is no concern about whether other humans in the room may also detect the same scent. However, in the case of a TMAU SD alert, the handler is very much interested in the perception to this scent by other humans in the room based on their respective olfactory sensitivity. As our expert questions above, at what “T” level can we say that the sufferer’s odor is detectable to most persons in the room? Perhaps as we proceed with this program, Dray can help us get a better picture. We shall most certainly try.
NOTE: A TMAU Service Dog’s alert is not intended to replace the need for TMAU testing and diagnosis by a professional laboratory and medical professional any more than a Diabetes Service Dog’s alert is intended to replace medical attention for a diabetic. An SD’s service is intended to complement the physical and mental health treatment provided by professionals, not to replace it.
Once Dray is fully trained in all his “T” alert services, there are so many wonderful exploratory studies that can be done, such as to observe his response to the same urine samples provided to the lab for comparison and documentation’s sake. Would he alert to acceptable (normal) or borderline levels of TMA in the urine, according to test standards, as he would to high levels of TMA? Can we train him to modify his response to low "T" levels to be different from his response to high levels? Liz believes he can be trained to do this. It would also be interesting to document his response to a saliva sample as compared to his response the urine sample collected at the same time.
This very basic observation and documentation of the dog's behavior would be ground-breaking 'uncharted territory'. Dray's performance would have to be studied and recorded in a more scientific manner in order for our scientific and sufferer communities to get the greatest benefit from his great olfactory gift. This process will establish a good foundation upon which to build in order to offer the most effective service to a sufferer on a personal level and possibly to scientific research.
In the end, once the dynamics of a TMAU Service Dog is perfected as much as possible, we hope we can move on to also train him to alert for other types of body odor. Liz tells us that a dog can learn up to approximately 300 commands. They can probably detect scents that we humans can’t even identify and don’t even know exist. Perhaps in time, as this program matures, an SD might serve as a ‘screener’ in a meetup, giving feedback to those sufferers who ask him about the type of odor they are emitting, if any. This information might be useful for a researcher or a physician to determine which tests to begin with or which diet might be appropriate. Perhaps by conducting a study comparing a group of sufferers sharing a similar body odor to another group of sufferers sharing a different body odor as identified by an SD, it would help scientists better understand the various causes of uncontrollable body odors.
If we think 'outside the box', we might just find new ways to better understand our conditions in a more scientific manner with the loving help of ‘Man’s Best Friend.’María de la Torre
Founder and Director
MEBO Researchmaria.delatorre@meboresearch.com
The NORD TMAU Fund, which will be used to ask researchers to submit preliminary research proposals into TMAU, has now reached the halfway point. $35,000 is needed to activate the fund.
The total now stands at :
$18,422
To read more about the 'dollar a day in May' campaign and latest on fundraising, see the rrr-tmau.org website
As time goes by and awareness of test results amongst the community surfaces, it has become clear there is a pattern in the UK of a few testers getting a result that implies 'primary TMAU' in their phenotype (urine) test, but when they do the DNA test for confirmation, no suspect FMO3 copies are found. A geneticist with expertise in FMO3 DNA clinical testing, Richard Kirk, MSc FRCPath Lead Clinical Scientist, was asked about this, and this was his response to this anomaly :
Q : I understand your lab does the FMO3 DNA test. I was wondering if the test also looks for only mutants and not polymorphisms/variants/wild-type ? We seem to have a few people who would seem primary TMAU cases in the urine test, but the DNA test says they are normal.
A :Thank you for your email. Our FMO3 DNA test is done by sequencing all the parts of the FMO3 gene that code for the FMO3 protein/enzyme ('exons' in genetics terms). This means that we do pick up neutral polymorphisms and variants, as well as pathogenic mutations. In particular, we can and do detect the p.[Glu138Lys;Glu308Gly] variant haplotype that is mentioned in the 2007 paper, and others. If we find this variant haplotype on one or both copies of the gene, we include it in our reports. There are certainly individuals that appear to have primary TMAU on the urine test, but nothing on our DNA test. Although our test will pick up all the mutations that have been described in this gene, we cannot exclude rare mutation mechanisms such as mutations deep within introns (the non-coding DNA between the exons) or mutations affecting the controlling mechanisms for the gene. There is also a theoretical possibility that other related proteins/enzymes could be affected. Unfortunately, investigating these possibilities would be research, and beyond the current scope of a diagnostic service like ours. I hope this information is of help.
...The one addition I would make is that we also cannot exclude a non-genetic cause for a 'primary' result on the urine test. Further biochemical and microbiological follow-up can sometimes help to give a full picture. Unfortunately in some of these cases our current laboratory testing cannot come up with a final answer.
Richard Kirk MSc FRCPath Lead Clinical Scientist - Inborn Errors of Metabolism Section
Sheffield Diagnostic Genetics Service
Sheffield Children's NHS Foundation Trust Western Bank
SHEFFIELD S10 2TH UK
This pattern seemd to be also demonstrated in a dissertation paper in the USA, where 12 people known to have been diagnosed as primary TMAU in the urine test were then DNA tested, and 8 found to not have the textbook genetic model of the disorder, namely 2 mutant FMO3 copies. http://digitalcommons.library.tmc.edu/dissertations/AAI1450285/
It is with great pleasure that I announce that the Articles of Incorporation for MEBO Research, Inc. were registered at the Florida Department of State, Division of Corporations on April 21, 2010 and assigned Document Number N10000003979. Thus, MeBO is now officially a company registered in the United States.
The Legal Clinic of the College of Law of Florida International University has offered their pro-bono services to write the documents necessary for MEBO Research, Inc. The cost for this filing was $78.75. The next step is to apply with IRS for a 501(c)3 non-profit (Charity) organization status. I’ve been advised that to file for the 501(c)3 status will cost an additional $700-$800.
Once these steps are finalized, I will then apply to the College of Business Clinic (also a pro-bono service) at Florida International University for assistance in setting up a transparent accounting system, and hopefully also in the grant-writing process.
MEBO Research, Inc. is a sister company of MEBO Research, a Limited by Guarantee Company registered in England and Wales on February 5, 2009 as a limited non-profit company.
For additional information, please see previous post.
This is a video hosted on the Blip TV website, which is a site where people can upload videos for a share of the advertising revenue. It's a brief summary of Trimethylaminuria by someone who refers to themself as a Dr. Most interesting, he suggests that 'one gene carriers' (meaning carrier of one mutant gene) may suffer mild symptoms at times, which must have been his conclusion from having a look at past medical papers on the subject.
Embarrassing Illnesses on Channel 4 in the UK is a well known health program focusing on health problems that cause embarrassment. Earlier this year they showed a TMAU case which was mentioned on the blog at the time. In these videos from their own youtube channel, they take a look at 'traditional' oral-sourced halitosis. In the first video they do a quick voxpop test of people using one of the cheap halitosis-checkers available nowadays, and also advise smelling some scrapings from the back of your tongue. In the second video, a halitosis case visits the Fresh Breath Clinic in the UK, where the conclusion is that the cause is bacteria in plaque which is avoiding toothbrushing, especially (it seems) around the gums. It is interesting to see they use a plaque disclosing solution to reveal the long-term plaque. This can be bought from local chemists.
Recently there has been interest in the theory that underarm-produced body odor could have a genetic factor, and there has been some interesting research into this, using monozygotic (identical) twins to study the hypothesis.
In a 2005 study, the aim was to use a group of human 'sniffers' to match underarm odor samples from identical twins who did not co-habit (so as to avoid cohabiting factors being a factor). They did indeed find that identical twins underarm odor samples were matched by the human sniffers more often than chance would dictate. Non-identical twins were also more often matched, but not as often as identical twins.
Some quotes from the study :
The idea that body odor reveals information about both genetic identity and genetic similarity is most readily tested by examining odor in twin pairs...
... Here we show that odors of identical twins (but not dizygotic twins) can be matched by human sniffers at rates better than chance, even when the twins are living apart. In addition, matching frequencies for identical twin odors were not significantly different from those for duplicate odors from the same individual. These results indicate an important genetic influence on body odor and the potential for developing technologies for human odor printing in relation to underlying genotype....
...For example, it is thought that body odor carries cues of genetic similarity, which may be used in mate selection...
...Environmental influences on individual odors are well known and include effects of diet, disease , parasitic infection, and social or reproductive status...
...While dietary influences are likely to be most relevant in humans, any environmental influences arising from cohabitation could potentially confound any putative odor similarity determined by genetic effects...
...We collected axillary odors on cotton pads worn overnight in the twins' own homes and delivered to us by hand the following morning...
...Female body odors may be more variable than those of males as a result of menstrual cycle influences...
...Possible sources of this effect are genes within or linked to the major histocompatibility complex (MHC). Although this requires further research, MHC genes appear to influence odor preferences in many vertebrate species including humans...
A study in 2009 examined the same hypothesis using identical twins, this time comparing samples biochemically, testing each sample for carboxylic acids, which are known to be a source of axillary body odor in humans.
In humans, a correlation between odour preferences and the HLA type of both the odour donor and the odour evaluating individual has been shown (,Wedekind et al. 1995; ,Wedekind & Füri 1997). Therefore, in humans an association between body odour type and genes in the HLA locus appears to exist. Thus (i) it has been proposed that mice secrete a specific pattern of volatile fatty acids associated with their MHC type, (ii) human body odour appears to be influenced by genes in the HLA locus and (iii) a specific pattern of odorant fatty acids in human axilla secretions is strongly influenced by genetic factors (our current finding). The key challenge for the future is to establish whether the genetic factors contributing to these analytically observed profiles of fatty acids reside at least partly within the MHC/HLA locus in humans as they do in mice.
It should be remembered that neither studies will take into account malodorous biochemical systemic body odors like TMAU, since they will not be aware of such sources of odor. The first study told the testers not to eat certain foods known to cause body odor, but this was so diet wouldn't be a factor. Nevertheless it is likely that in many body odor cases there probably is a strong genetic factor, even if it is a susceptibility to a particular type of bacteria ecology under the arm. And of course most systemic body odors probably have a strong genetic factor.
rrr-tmau.org are keeping up the TMAU fundraising effort by this month having a $ a day in May program. Essentially it involves sending $30 this month to the NORD TMAU Fund, as they head for the $30K target as soon as possible.
You can see full details of the $ a day in May campaign on the rrr-tmau.org website
The more that brave volunteers raise awareness of systemic body odors in particular, the more chance all of us have of society understanding our plight and helping us towards addressing the problem. A Filipino gentleman has bravely uploaded this video to CNN's Ireport website, where people can upload their own stories to the CNN website. Thank you Rummel. You can leave comments underneath the CNN pages where the videos are hosted.
If you upload your story to ireport, let us know and we will post it here.
Ireport page : CONFESSIONS ABOUT MY RARE METABOLIC DISORDER CALLED TMAU - - PART 1
Part 2 :Part 3http://www.ireport.com/
Note : It seems that this option is likely not possible at this price. They will most likely refer you to TDL, who charge around £160 for the test. So the final price would be £160 + £20 + £15 = £195
Update : This option does not seem possible and is not recommended
Update : UK TMAU urine test now available direct via MEBO Research
e-med offers consultations with your own private online doctor by e-mail or in person.
It takes just a few minutes to join, then you are ready to consult as soon as your membership is approved. For those who wish to do the trimethylaminuria urine test without a doctor and pay for it themselves, it can be difficult to find access to such tests. In the UK, the current suggestion MeBO Research makes is to test via Mullhaven lab. Sheffield Children's Hospital is the only known actual TMAU test lab in the UK, and if you see the test available anywhere else, it will likely be sent to Sheffield for testing. Mullhaven lab is the cheapest we know of, costing around £193.
However, a better route may be to join E-med, which is an online 'doctor's surgery'. It costs £20 a year to join, then £15 per 'consultation', which they say involves as many emails until you feel satisfied with the consultation. They can arrange tests etc.
Sheffield Children's Hospital charges around £140 to anyone accredited to request such NHS tests (such as a private Dr), so testing through E-med should cost around £175 for testing, and include an email consultation from a surgery who currently have not heard of TMAU, but presumably over time will learn.You could also contact Nigel Manning directly to discuss your results, as he has said he would be willing to help interpret it for you.
So, if it proves possible to TMAU urine test via E-med, this would be the way MeBO would suggest testing for TMAU directly in the UK if you don't mind paying. If anyone tries testing this way, or knows a cheaper route, please let us know what you thought.
Remember that the test is available for free on the NHS.
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but 0.5% of something beats 4% of nothing
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TOTAL DONATIONS: $267.48 = £159.47 (30AUG14) 1st shipment to Kenya 3JUN14 $92.75/USD 2nd shipment to Ghana 15AUG14 $104.56/USD 3rd shipment to Kenya 19SEP14 $95.51/USD DONATIONS 2017: £5.00 (3MAR17)
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María de la Torre
Founder and Director
UK 
Spain 
