bodyodorsupport.com temporarily closing

The main body odor and halitosis internet forum, bodyodorsupport.com, run by Arun Nagrath, seems to be going under a reconstruction and is being temporarily(?) closed.

A temporary replacement forum has been set up at breathandbodyodour.proboards.com

Solution found for 20 'normal' volunteers for TMAU testing

In a previous post we mentioned the need for 20 'normal' samples to set a 'normal' range for TMAU urine testing at the Cleveland Clinic, as seen in the post : Trimethylaminuria (TMAU) testing at Cleveland Clinic : 20 normal samples needed

We are pleased to say that someone is helping arrange 20 'normal' volunteers to supply the samples to allow the normal ranges to be set. We are also told by the Cleveland Clinic that they "have just finished up the stability testing and are reviewing the data. I will follow up shortly with a summary of our results and how to proceed."

We are expecting the testing to begin relatively soon and will keep you updated. However we will not forecast a date yet, to err on the side of caution.

UK DUETs to help prioritise new research in NHS takes interest in FMO3 deficiencies

As Karen James(username Malory) and others in the UK and in the US have implemented initiatives to raise awareness in the UK’s medical establishment, we are beginning to see signs of having received the attention of the National Health System's department that could potentially make a difference in research possibilities and clinical guidelines. As we wrote emails and letters to the NHS officials that Karen selected for us, she was referred to,

Mark Fenton, Project Manager,
UK Database of Uncertainties about the Effects of Treatments
(UK DUETs*)
NHS Evidence,
National Institute for Health and Clinical Excellence, (NICE)

*NOTE: UK DUETs is a service of the National Health Services (NHS) in the United Kingdom that draws on three main sources to identify uncertainties about the effects of treatments, patients, carers, and clinicians. It is,"A resource to make uncertainties explicit and to help prioritise new research."

As Mark writes to Karen in response to the literature we sent from sufferers in the UK and US,

What a challenging submission…What I am trying to do is form a statement which reflects the Intervention (in this case enzyme replacement therapy), Comparator, Patient/Population and Outcome (ICPO). You specifically ask about UK research for treatment, but my approach would be is there any research worldwide. A brief search on the Cochrane Library and other such databases leads me to believe there is little, if any, quantitative research anywhere. A search for trimethylaminuria on NHS Evidence produces very few returns, which does return five treatment hits…It seems to me that your submission is truly an uncertainty, and if you are in agreement, I think should be one of the two statements above about what the uncertainty is, unless you can assist me in forming a more indicative question…I'm more than happy to call you if it would be off assistance.

[Mark Fenton, Project Manager , UK Database of Uncertainties about the Effects of Treatments (UK DUETs), NHS Evidence, National Institute for Health and Clinical Excellence]

After Karen told Mark that she was, “liaising with MEBO Research (registered charity for odour-producing disorders) to see if they can help us with formulating a question…”

Mark replied, “I'm happy to wait and see what happens with your response from MEBO Research for an indicative question. I can get the two supplementary questions into UK DUETs.”

As a result, I have tried to compile information, including a list of experts who MEBO has consulted with throughout the years, articles published in scientific journals, and 5 indicative questions that perhaps Mark might consider for his ICPO, especially beneficial may be question #5 below for ICPO.

Read More

Need for 20 'normal' samples of urine to set up TMAU testing program

As regular readers know, we have been looking to establish a systemic body odor/halitosis testing program for those wishing to test and in the interest of research, beginning with offering a TMAU urine test.

Our first attempt was to establish the urine testing through Eliapharma, which has unfortunately not gone as we had hoped, due to difficulties in the lab finding the methodology to validate their machine for testing, TMAU being outside their usual line of testing.

We have looked for an alternative and the Cleveland Clinic has kindly offered a TMAU testing service to us, with a ballpark figure of $100 being established for the test. They are very familiar with testing of human samples, but have not tested urine for TMAU before. It is standard procedure for a clinical lab to set their own 'normal' range for samples (taken from 'normal' people), rather than copying the 'normal' ranges of other labs.

They have asked us to provide a minimum of 20 'normal' urine samples for them to establish their 'normal' range. This has proved a bit of an obstacle for us, as we obviously expect ourselves to be mostly a community of 'abnormal' ranges, and there is a chance that those closely associated with us may be, for instance, 'carriers'.

The ideal answer would be, for example, samples from a group of strangers such as a class or a workplace. If anyone thinks they have an idea how we can get a set of 'normal' samples, we would gladly listen to any offers of help.

The moment of truth is now - PETITION

Every once in a while, we are faced with a moment of truth, a moment in which we can be valiant and stand up and make a difference, and that moment is now.

Why is it so difficult for the body malodor and halitosis community to be acknowledged as an entity that needs attention by the scientific/medical community and society at large in order to obtain the help needed? What puts our community in last place in any attention-getting efforts compare to other “popular” diseases?

The nature of this condition drives the sufferer to feel embarrassment at all times, in all social situation, thus driving the individual towards social isolation. Many persons fight through this obstacle and manage to find employment and to create a family with a life partner and have children, yet there is always an omnipresent underlying anxiety of living with this embarrassment and shame.

This way, we can overcome the frequent objection to funding research which claims that we are small in numbers and not worth the investment.

So for a sufferer to be asked to participate in a raising awareness project to promote research, treatment, and a cure, is a very threatening prospect because it basically calls for the individual to come out of his or her safety zone and to come out of “hiding.” Nevertheless, it is the ONLY way that research, treatment, and a cure can be obtained! This way, we can overcome the frequent objection to funding research which claims that we are small in numbers and not worth the investment.

This is the time to make a decision to be strong, to stand up and take action, to make a difference, and to make it better!

Throughout our lives we are faced with many challenges that we would prefer never existed, and this one is near the top of the list. In the end, like every other aspect of our lives, we will be held accountable for our actions, if to no one else, to ourselves and even more painfully, to our offspring. Every once in a while, we are faced with a moment of truth, a moment in which we can be valiant and stand up and make a difference, and that moment is now. This is the time to make a decision to be strong, to stand up and take action, to make a difference, and to make it better!

PLEASE SIGN THE PETITION TO,

• raise awareness of systemic body odor conditions in the medical community
• governments to increase direct federal funding
• make scientific research of various types of body odor diseases a high-priority; including but not limited to, Trimethylamimuria (TMAU)
• efforts so that effective treatments and cures can be found.

PLEASE ASK YOUR FAMILY, FRIENDS, AND SUPPORTERS TO SIGN.
Anyone can select to either display or not display
his or her signature publicly on the petition.

Thank you for your participation in finding a solution,

María


María de la Torre
Founder and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

A Message from MEBO's Community Outreach Director

Cheryl Fields's presentations are full of

Inspiration, Encouragement and Hope for everyone!
Jammed pack full of energy, inspiring, moving,
great audience participation!

Are you ready to be encouraged and challenged to reach new levels in your life? Would you like to be a more effective in your life? Dr. Fields' conference promises to be a wonderful time where you can discover how to walk in a "winner's attitude". One of the major characteristics of Dr. Fields' presentations from its inception was the unusual sense of unity that prevailed among the diverse group of participants! You wonʼt want to miss this very special event! We think you will leave revived and better equipped to be all that you can be!

"We should help others do what is right and build them up in the Lord..."
(Romans 15:2)


Cheryl "StillStanding" Fields, MBA, Ph.D. (ABD), presentations are full of inspiration, encouragement and hope for everyone! Jammed pack full of energy, inspiring, moving, great audience participation!

"Give Generously", when you step out and Bless other people,
you are honoring and Blessing the Lord.
(Psalm, 37:21)

For bookings and further information contact:


E-mail: emporia962000@yahoo.com
You can book Cheryl today for free!
Yep, that is correct!
FREE!


"We should help others do what is right and build them up in the Lord..."
(Romans 15:2)

Meetup in Maryland with Cheryl Marshall

Message from Cheryl Marshall:

Informal support group meeting

for people with Trimethylaminuria / Other medical malodor disorders

We will be in Washington DC / Bethesda Maryland area to attend a Genetic Alliance conference. The night before the conference begins, we will host an informal support group meeting as a way to get together with some of the people in the tri-state area who are living with malodor conditions and would like to come together informally to meet others facing the same challenges.

When: Thursday evening, June 23rd, at 6:30 p.m.

Where: Please meet us in the lobby of the Marriott Hotel

(there are couches in the lobby, to the left of the entry way).

Bethesda North Marriott Hotel & Conference Center

5701 Marinelli Road, Bethesda, Maryland

Phone: 1-506-474-2009

Please check with the MD Metro system for directions by train but I believe the stop is 'White Flint'.

There is no cost to attend.

RSVP / contact us at:

Trimethylaminuria Foundation

Cheryl Marshall, Director

Ph: 561-386-9515

7040 Seminole Pratt Whitney Road

Loxahatchee FL 33470

Please leave a message to let us know if you plan to attend; leave your name and contact phone number so that we can get in touch with you.

If you plan to attend, you must call us to RSVP and provide us with your contact information so that, if plans change, we can notify you of the change. We will also contact you with specifics regarding the meeting place once we know how many people will be in attendance. Please do not "just show up" and ask for us at the hotel's front desk (as the hotel will know nothing about this) and we’d appreciate your being on time if you want to join us.

Looking forward to meeting old friends and making new ones!!

Petition Update - Raising Awareness Campaign

Not everyone who signs this Petition necessarily suffers of this condition. Nonetheless, all are supporters of our cause.

MEBO Research is most grateful for the support received in only five (5) days, during which time the Petition for Raising Awareness of systemic body odor and halitosis conditions has been in place for signatures. This Petition will be used to support any member of our community who wishes to approach any government agency, private institution, legislators, and/or international entities, such as the United Nations, to promote this cause, as stated in the Petition.

All sufferers, family and friends, and any other persons who support these objectives are welcomed to participate.

Not everyone who signs this Petition necessarily suffers from this condition. Nonetheless, all are supporters of our cause.

The signatory may select whether to display or not display his or her signature publicly.

To sign the Petition, please click here
or on the Petition icon

On behalf of the whole malodor community, our heartfelt gratitude goes out to all signatories who participate.


María de la Torre
Founder and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

MeBO-Biolab gut dysbiosis study : Results for volunteer 12

It has been over a year since we last had a volunteer for our MeBO-Biolab (London) Gut Dysbiosis Study, but we are happy to give the results of volunteer number 12 for the study. The study was MeBO's first attempt to proactively kickstart insight into the causes of systemic body odor and halitosis. The tests chosen were greatly restricted due to lack of funds (each volunteer having to pay their own testing) and limited to the choice of tests Biolab has on offer. Of Biolab's tests, it was decided to choose the tests below which cover small intestine fungal overgrowth and 'leaky gut', as well as some biomarkers for bacteria gut overgrowth (but not the hydrogen-methane breath test) and testing B2 levels, since it is necessary for FMO3 to be function.

It must be pointed out that the tests chosen may not have anything to do with the causes of the person's odor problem and cost to the volunteer was a major factor, as well as choice of tests on offer from Biolab, though many feel they also have a 'gut dysbiosis' issue that may play some role in their odor problem. At this point, we cannot say if this is correct or not, with probably genetics being the main factor in most but not all cases.

Here are the results of Tester 12:

Tester 12
Male, late 30's
Odor problem:	Body odor problem for over 20 years. Feels it causes allergic reaction in others
Gut problems	Constipation. Undigested food in stools
Other problems	Nail fungus. Athlete's foot
Trimethylaminuria	Negative urine test
Results :	Tester 12
Gut Fermentation	Ethanol raised : 134 (normal less than 22) Implies fungal overgrowth in small intestine
Gut permeability	Raised (after 242)
Indicans	negative
D-lactate	96 (normal was previously below 60 but is now below 100)
Vitamin B2	1.23 (Borderline)

A Summary of the full results of the testers can be seen on this page :
MeBO-Biolab body odor/halitosis gut dysbiosis study : summary of results

So far there does seem to be a trend of 'yeast overgrowth' and 'leaky gut', as well as B2 supplies being on the  lower side. Anyone wishing to be part of the study can fill in the form below. Please note the lab is in London and it is probably best that those wishing to partake be from the UK or nearby countries. For the gut fermrentation test it is probably best the person attends the lab rather than try to find a helpful Dr.

MeBO-Biolab body odor/halitosis gut dysbiosis request form

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Comments about tester 12 results


Tester 12 like many of the others seems to have a yeast overgrowth issue and a leaky gut. His ethanol is quite high, which is presumed to be produced by yeast ovegrowth in the small intestine. His gut permeability test also goes high after molecule of size 242, indicating large molecules can get through the gut lining. So far, these 2 results have been quite common in our study.

B2 is at borderline level (B2 being needed for proper FMO3 function). Tester 12 was normal for the TMAU urine test (not done in this study). Indicans was normal. D-lactate was relatively high compared to others in the study. Biolab have raised their 'normal' upper limit from <60 to <100, so perhaps it is worth considering the d-lactate level in this case. This D-lactate is produced by lactic acid bacteria in the gut, and is different from the lactic acid produced in muscles.

FMO3 genetics lesson (part 2) : DNA, RNA and the protein

In this post we will familiarise you with the way a protein is made, in this case the FMO3 protein. The DNA has the coding for the amino acid sequence, that is transcripted into long RNA and then processed into short RNA, which is then converted into the final  sequence of amino acids that make up the  required protein (in this case the FMO3 protein).

Exons and Introns
DNA has the coding part on exons, which has the relevant information to make the FMO3 protein, but also contains introns which are currently a mystery and it is not known if they are needed. Some may regard introns as mostly junk DNA. Unfortunately, while introns seem to play no obvious role in building the protein, it seems likely that having mutants/variants amongst the introns  can still negatively affect the formation of the correct  full protein. This may explain why some people seem quite obvious genetic TMAU cases in the urine test, but the DNA test does not seem to show any mutantions. The DNA test usually only checks the coding region of the FMO3 DNA in the exons, and not the introns.

In FMO3, there are 9 exons, of which 8 (exon 2-8) are regarded as the coding parts. Probably most DNA tests will check these 8 coding regions specifically.

As can be seen from the slide above from Professor Shephard's slideshow (full video can be seen in the sidebar), The DNA is transcripted to long RNA and then processed into the short RNA form which does not contain the introns, and only contains the exons. It is now ready to code the amino acid sequence to build the FMO3 protein. The RNA is the part which has the sequence for the 532 amino acids needed to build FMO3 (the DNA coding being much longer including introns).

Looking at the terminology geneticists use, it can be seen that sometimes they refer to e.g. 668 (which obviously is higher than 532) because it is referring to a mutation/variant on the DNA strand (which is much longer), which corresponds with a fault at amino acid 223 (which means it is referring to the position on the final protein or short RNA of 532 amino acids).

It seems that nonsense mutations produce a 'false' stop to the production of the 532 amino acids. These make up about 5% of the known genetic TMAU mutations currently known.  The drug 'Ataluren' is hoping to be able to over-ride false stops in nonsense mutations and allow the full protein to be formed. The other FMO3 mutations/variants are mostly 'missense' mutations, where the wrong amino acid has been coded for a certain position in the 532.

A full overview of the genetics of FMO3 can be seen in the video given by Professor Shephard in the sidebar.

Petition for Raising Awareness Campaign

MEBO Research invites all readers of this blog, including sufferers, family, friends, and other persons who support these objectives, to please participate in MEBO’s International Raising Awareness Campaign of systemic body odor and halitosis conditions by signing the Petition created for this purpose. By signing this petition, you become part of the solution, taking action to change the lives of all sufferers around the world, and striving to ensure that our children and our children’s children will live carefree and happy lives, without the suffering these conditions cause.

Only your first name, last name and your email address are required to create your signature. If you would like to state your country, you may click on “Outside,” and select your country. This will then represent a clearer indication of the international nature of this petition.

In order to ensure that this petition reaches all sufferers from around the world, we ask the signatories whose native language is not English, to please translate it and to notify MEBO of the forum in which the translation of the petition will be hosted, so that it may be posted on the right sidebar of the Petition. For instance, the translation into Spanish is hosted in MEBO’s Spanish Blog, Olor corporal y halitosis.

In an effort to assist all participants with a better understand this petition, Google Translate Application is available for your use, and located on the upper right section of this document.

On behalf of our international community, we are profoundly grateful for your participation.


María de la Torre
Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

Introducing the MeBO Marketplace

MeBO Research is happy to announce the opening of the MeBO Marketplace on a new and separate website, as a way of raising money which will be used to fund research into systemic body odor and halitosis.

MeBO is always looking at ways of raising funding for research into systemic body odor and halitosis, especially if at no extra cost to our community A good way to raise money through the internet is via affiliate linking, where people can click through the ad links and purchase goods from the online shops. This is how advertising works on the internet. No extra cost is charged on goods for the purchaser, and in this case MeBO will get a percentage (4-24%) of the transaction which will go to the MeBO Research Fund.

Currently we have Avon, Amazon, and Herbspro on the page, but will include many more over time. So for instance, if you regularly buy things on Amazon, you can go through to Amazon via the link on that page and MeBO will receive a % of your purchase at no extra cost to you. If you have any other shops you would like included you can let us know and we will check if they are part of the affiliate program.

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Note :
MeBO is not given any personal details of transactions
MeBO only makes money on transactions, not on clicks
This site is not a part of meboresearch.org, for organizational purposes

TMAO recently associated with predicting heart disease risk : Full paper now available to read

Recently we reported about the study headed by The Cleveland Clinic that found that Trimethylamine-n-oxide (TMAO) levels may be associated with predicting risk for heart disease. The full paper is now available to view in nature.com

Gut flora metabolism of phosphatidylcholine promotes cardiovascular disease

An especially good outcome of this proposed association with heart disease is that it will probably lead to much more interest in TMAO (which in humans is mostly generated from TMA production from bacteria action on choline) by the medical community and hence more (and more intense) research into how TMAO is generated in humans. For instance they may try to block trimethylamine production which would also obviously be very good news for TMAU sufferers since they need to avoid trimethylamine. However this would only stop the source of the smell in TMAU; trimethylamine. Those with primary genetic TMAU would still be genetically 'FMO3 deficient'.

...The human intestinal microbial community is an enormous and diverse ecosystem with known functions in nutrition, gut epithelial cell health, and innate immunity³¹. Intestinal flora recently also has been implicated in the development of some metabolic phenotypes such as obesity and insulin resistance, as well as alterations in immune responses^{11, 32, 33, 34}. To our knowledge, the present studies are the first to identify a direct link between intestinal microflora, dietary PC and CVD risk. These results indicate that an appropriately designed probiotic intervention may serve as a therapeutic strategy for CVD. Interestingly, production of TMAO can be altered by probiotic administration³⁵. Thus, in addition to the current clinical recommendation for a general reduction in dietary lipids, manipulation of commensal microbial composition may be a novel therapeutic approach for the prevention and treatment of atherosclerotic heart disease and its complications. The present studies also suggest a further novel treatment for atherosclerosis—blocking the presumed pathogenic biochemical pathway at the level of the gut flora through use of a non-systemically absorbed inhibitor.

MEBO Research’s commitment to transparency Part 2

As noted in the Part 1 post in this blog dated May 16, 2011, I have been working on MEBO’s annual returns in the US and the UK, and have finally achieved this task to its completion.

All are invited to see MEBO Research's detailed financial reports,
since the inception of the US company,
MEBO’s US Charity bank and PayPal accounts,
and MEBO’s UK PayPal Report of this past fiscal year.

As you will note on these reports, MEBO has never been in the red in any of these accounts; and even though the income has been very limited, each dollar/pound has been carefully managed and guarded.

Due to my recent personal hospitalization and persistently not feeling well, I have had to struggled to muster up energy to be actively involved in our multiple community projects, such as,

1. To post in the Body Odor Support forum,
2. To attempt to answer some of the emails I receive (can’t get to them all),
3. To attempt answer some of the phone calls I receive from the community (can’t seem to get to them all),
4. To stay involved in the projects members from the MEBO community are carrying out to promote raising awareness and public relations in a few countries, and with the creation of a new petition for our international community to utilize to support this effort,
5. Working diligently to face the challenges involved in expanding TMAU testing to all sufferers throughout world with all the complications international programs inherently brings,
6. To assist MEBO volunteers in posting and maintaining MEBO’s Blogs and Website,
7. And what is most exciting to me, to finally begin work with a very coherent team of MEBO volunteers as we have initiated MEBO’s fundraising/grant seeking campaign targeting private and public corporations and government agencies at an international level. Much more information will soon be forthcoming about this campaign in this blog and in MEBO’s website.

IT MUST BE NOTED THAT since the first post written on this blog on October 4, 2008, followed by all the programs MEBO has supported and spearheaded to the present time, not one person or private organization has ever been paid one single U.S. cent/UK pence/European Euro, for any MEBO related services.

This includes all sufferers or non-sufferers in our community who have participated in any of MEBO’s projects, including but not limited to,

1. Participants of the raising awareness campaign,
2. Participants of the self-funded small study projects/testing programs with Biolab Medical Unit, SmartNutrition, and Eliapharma Services Inc., (paid by each individual person testing, and these labs/experts are not part of MEBO in any way,
3. The attorney and law students at Florida International University College of Law, who volunteered their services pro-bono to raise MEBO to a 501(c)(3) Public Charity Status in the US,
4. MEBO’s accountant in England,
5. MEBO’s financial advisor in the US,
6. MEBO’s technical consultant in the US,
7. MEBO’s Board Members, including myself.
8. Experts from multiple countries who have participated in providing MEBO with quality scientific information to publish in our English and Spanish blogs and website and to discuss in the conference part of our U.S. annual meetup, and many more projects.

I reiterate, I AM PROUD TO SAY THAT NOT ONE PERSON HAS RECEIVED MONETARY COMPENSATION OR ANY OTHER COMPENSATION FOR THEIR VOLUNTEER WORK. It is humbling to see the inspiration and determination of our vast international community to become proactive in pursuing testing, funding for serious research into all body odor conditions, and in changing the world in which we live to provide for ourselves equal opportunity to live our lives in pursuit of happiness. It is the palpable commitment to action of our international community that inspires me and gives me the strength to continue moving forward in assisting the volunteers achieve our goals, even when my body fails me over and over again.

I warmly thank each and every one of you for being a part of this community.

María


María de la Torre
President and Chief Executive Officer

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)