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Monday, March 26, 2012

Discussion on the MEBO-Menssana Alveolar Breath Research Study

MEBO Research is currently in the final stages of setting up the Alveolar Breath Research Study discussed in previous posts.

Reason for the creation of this study:

  1. Currently there is only one systemic body malodor test available - the trimethylaminuria (TMAU) Test. According to the figures the Principal Scientist who does the most of the TMAU tests in the UK, Nigel Manning, approximately 33% of the urine tests he did from 1997 to 2009 indicated significant TMAU (Primary - genetic, and Secondary - acquired). That leaves 67% of sufferers not only with no other test available, but consequently without answers to what is producing their odor.
  2. Most of the persons diagnosed with TMAU claim that their odor is not a fish odor, but instead describe it as more of a fecal odor, garbage, sewer, burnt odor, and others.
  3. Of the 33% diagnosed with both, Primary (genetic) and Secondary (acquired) TMAU who are able to decrease their TMA levels with diet, antibiotics, and supplements, many, if not all, claim that their odor returns from time to time, and is affected by hormonal changes, stress, and other undetermined reasons.


It seems that all sufferers and experts agree that much more research is necessary not only on TMAU, but exploratory studies to discover other types of body malodor and systemic halitosis conditions. Unfortunately, this rhetoric has been going on for years, and no action has been taken, primarily due to lack of the substantial research funding needed to achieve this goal. It is for this purpose that MEBO Research was created - to promote and initiate exploratory research into areas that might help sufferers identify higher than normal levels of odorants expelled from the body and the cause of their existence, which have yet to be identified.
But how are we to accomplish this without large grant funding?
  1. Sufferers must unite and fund the research.
  2. Under the direction of experts and supervision of the Institutional Review Board (IRB) created for this purpose, design exploratory research studies with whatever limited funding we can obtain.
  3. Until funding becomes available, allow those sufferers who wish to volunteer as participants to be tested for the purpose of performing exploratory studies to help fund the studies by paying for their own tests.
  4. Raise funds from the rest of the community to help fund testing for research studies.
The most difficult part of developing a participant-funded / community-funded exploratory study is to arrive at an answer of what specifically will be studied and how will it be performed. Whether the exploratory study is funded by sufferers or grant donors, it is MEBO's highest priority to invest those funds in whichever manner is recommended by experts for the benefit of sufferers. As expected, the more sophisticated the methodology, and the more logistically targeted the study is toward more probable causes, the more expensive the study becomes. This is in part due to the fact that some level of research and development has to take place to design the instrumentation and testing method.
MEBO is therefore left with the challenging question:
  1. Whether to leave the cost-prohibitive studies for a later date when we receive substantial research grants or
  2. Currently focus on those exploratory tests funded by participant sufferers, though more limited in scope, while we continue to pursue larger grants,

  3. To do nothing at all and remain as we have been - with no hope for answers.


Another top priority question MEBO is concerned with is what would a patient get for his or her financial investment as a participant, as the research focuses on obtaining long-term data compilation to better substantiate the conclusion of the study.
The following are the answers I think are appropriate for this question:
  1. To be thoroughly straight forward, honest, and upfront with the fact that the study is exploratory - treading upon "unchartered territory" in the science of body odor
  2. To explain the reasons why MEBO is pursuing the particular study, i.e., funding restraints, trends found in professional literature, based on what sufferers express in forums and skype
  3. To be perfectly clear in disclosing this, since it is exploratory, there may not be any great personal or communal discovery, and it is possible that in the end, the tests in the study serve only as a "ruling out" process instead.
It would be very much appreciated if readers would use the "Comment" feature on the bottom of this post to share their thoughts with MEBO about what they would like to see done in terms of exploratory research studies. Thank you for your support.
María
María de la Torre Founder and Executive Director A Public Charity www.meboresearch.org www.brasil.meboresearch.org maria.delatorre@meboresearch.org MEBO's Blog (English) El Blog de MEBO (español) MEBO Brasil - Blog (Portuguese)

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7 comments:

BCS said...

I think people knowing what on earth is coming out of them is reason enough to make it sufferer funded and get it going. Those who do not fit the norm have no way of assessing what smell they give off. Even though there is a price, it does give people the opportunity to even possibly find this info out.

Surely, some anomalous reading will be detected which could send some of the harder cases possibly in the right direction.

However if there is a time limit, and this "waiting for feedback" period eats into that it should be held until surety that all pieces are in place.

Mar 26, 2012, 11:20:00 AM
Caroline said...

I support the idea of pursuing sufferer-funded exploratory tests and I plan on participating in them as well. The results of these smaller studies will be very important not only to individual sufferers in terms of identifying potential causes of their odors (or, at the very least, ruling them out) but also in terms of getting these answers faster while waiting for large grants to be procured.

More importantly, the results could also serve as guide on where to focus future research as well as aid in securing large grants to fund said research. Overall, these smaller studies will benefit the community as a whole and help fulfill MEBO's goals of initiating research into unidentified malodor conditions.

Mar 26, 2012, 2:34:00 PM
Anonymous said...

I'd like to keep the momentum going especially since Maria and others have spent so much time on getting this research in place. So if it means we fund the research ourselves while we're pursuing grants/donations/funding let's keep going forward.

Knowledge is power....the more information we can gather the better. We're so much farther than we've ever been before thanks to MEBO. Let's see this research through.

Mar 26, 2012, 11:07:00 PM
Anonymous said...

Lets keep going on the research. I'd like to find a cure and whatever it takes I will be more than happy to contribute time and as much money as I can.

Mar 27, 2012, 4:57:00 AM
Anonymous said...

I think the sooner we start testing the better. If that means participant funded research then so be it. I, unfortunately, will be unable to secure funds to participate but I think there are enough people who can and will. Who knows, these results may help our cause in securing grants/funding.

-Inconceivable

Mar 28, 2012, 9:21:00 AM
Baguio said...

As someone who has not been so active (certainly not in comparison with some of the individuals who are truly driving mebo forward!), I see this as a great opportunity to contribute.

I fully endorse an ongoing sustained testing regimen. Surely this is the essence of what is going to help us to reach the required conclusions and find the answers to the ultimate question i.e. what is causing this disorder for us - and what can we do to prevent/treat/eradicate it.

Having experienced this issue over many years, I have learned to live life as fulfilled as possible in spite of this disorder. Therefore, if the expectation is that this is a stepping stone on the road towards a full-on solution (rather than the ultimate fix), then that is still a worthy exercise. I think it's wise that this has been pointed out - so that expectations are realistic and it doesn't lead to a false dawn in the minds of participants in the aftermath of testing.

In relation to costs, I guess I am unsure of what sort of $$ your faced with in putting this programme together? How many participants would be required in order to spread the cost sufficiently? OR no. of participants plus $X? in grant funding?

Mar 28, 2012, 9:38:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

I would like to thank everyone who participated in this discussion. It is MEBO’s intent to give a voice to sufferers when most if not all feel no one listens and understand. With posts like this one, MEBO is attempting to empower sufferers to make a difference. Brainstorming and inviting new and innovative ideas are always welcome, including opposing views. MEBO Research is a sufferer-funded, patient-advocacy group intent on pursuing research to understand the causes of body odor and halitosis conditions of all types. These conditions include, but not limited to, malodor intra-oral and extraoral halitosis, malodor presenting in all parts of the body such as generalized body odor, TMAU, bromhidrosis, groin odor, out of the ordinary vaginal and anal odor, IBS related fecal odor, and others. It is up to sufferers to come forward and be a part of this movement, influence its direction with your opinions and participation. No one individual is MEBO Research; all sufferers are invited to be MEBO Research. We will very soon be inviting sufferers and their families to register as MEBO Research Members free of charge, so that we can be called upon to participate in research (on a voluntary basis without obligation), and in raising awareness mass email/letters campaigns, etc.

To answer your questions, Baguio, Menssana charges MEBO $300/USD for each sample we send them for analysis, and there is no limit to how many we send them in a period of one year. Menssana has covered the shipment of the BCA instrument and the required attachments, but MEBO is responsible for shipping the mouthpieces back to Menssana, and for shipping the BCA instrument to all the testing sites. There have already been expenses, such as the cost of registering an Institutional Review Board (IRB) with the US Federal government, to ensure that this study is of a high caliber and each subject is duly protected with this ethics committee. There is also the expense of renting a location in each city where sufferers will gather to take the test, and an insurance policy required by Menssana. As you could imagine, these costs do add up very quickly. We do need to brainstorm to come up with fundraising projects to cover these costs.

I thank everyone who has given their comments here, and ask for more participation from all sufferers around the world.

Maria

Mar 28, 2012, 10:09:00 PM
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