a PATIENT ADVOCACY International campaign to research SYSTEMIC BODY ODOR AND HALITOSIS
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It's been sometime since we posted about the TMAU therapeutic research (scroll down on this link to see all posts). When the project was announced in late 2012 early 2013, the timing could not have been more perfect as it coincided with the World Premiere of the “The Boy who smells like Fish.” The video seems to be available on YouTube for viewing.
With a project of this size and nature, and out of respect for the grant and scientists, we have thought it was best to keep the communications line open, but not to be too intrusive on the progresses achieved.
We have had communications with the scientists during this time regarding the TMAU therapeutic research and the inclination is that the project is progressing very well. It is very much alive and well, and starting this year, the hope is to obtain additional large grant funding to further the project. MEBO remain positive and supportive in any way to the scientists, and hopeful that a clinical stage project will be more attractive for funding. The scientists are steadily progressing with TMAU above any others, so we are hopeful and believe that any outcomes derived from the project are beneficial in finding us an effective treatment, if not a cure. It is very encouraging to our community to see that this research is very much alive and well, and looking forward to a bright future.;
We have had communications with the scientists during this time regarding the TMAU therapeutic research and the inclination is that the project is progressing very well. It is very much alive and well, and starting this year, the hope is to obtain additional large grant funding to further the project. MEBO remain positive and supportive in any way to the scientists, and hopeful that a clinical stage project will be more attractive for funding. The scientists are steadily progressing with TMAU above any others, so we are hopeful and believe that any outcomes derived from the project are beneficial in finding us an effective treatment, if not a cure. It is very encouraging to our community to see that this research is very much alive and well, and looking forward to a bright future.;
The project and grant are well documented at http://gtr.rcuk.ac.uk/project/772B5BB8-C185-455B-9AE2-C4BC7F8369DF.Below are some excerpts from this site:
Funded Value:£358,124Funded Period:Aug 2013 - Aug 2015Funder:MRCProject Status:ActiveProject Category:Research GrantResearch Activity:5.1 Pharmaceuticals(100%)
Planned Impact
The major beneficiaries of the therapy will be those who suffer from TMAU and their families and friends. Through her communications with patients, the PI is aware of the stigma, ridicule and other difficulties the patients face in their daily lives. The results from our pre-clinical study will provide a much-needed boost for those with TMAU. It will represent a pathway to a future therapy in humans. A therapy that can abolish body and breath odour will have a major impact on the quality of life of TMAU individuals, improving self-confidence and esteem, relationships and employment. A barrier to a normal life will be removed. The preclinical study runs for two years. With orphan drug designation and if fast track status is approved we anticipate a therapy to the clinic within five years…
Outcomes Impact: Patient group MEBO have access.
María
María de la TorreFounder and Executive Director
A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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5 comments:
How do they get a test group of people to be in the clinical trial when it starts. Will they look to our group first? Just wondering.......
I can't speak for the scientists performing this research, but in order for there to be the control needed for this study, I bet they will select the subjects who have tested positive for TMAU. The scientists will probably approach the physicians who perform the test and treatment in the UK, which many are involved with MEBO. But again, I can't speak for the scientists; this is just my speculation.
Some sufferers are becoming impatient and asking for the scientists who are carrying out this research to give an update now, only 1 1/2 years into this initial phase. Looking at this from the sufferer's point of view, 1 1/2 years is a long time to wait while experiencing symptoms and the psychosocial consequences. On the other hand, looking at this from the scientists' point of view, we've only just begun. It's very early in the process.
Scientists tend to be very closed lip while carrying on research. Mostly because they are in the process of gathering data to prove their theory. So, what if their research data proves their theory to be wrong, and then the theory is modified and tested, etc? If they had commented along the way, they would eventually be accused of making false claims, and rightfully so. They can't make any claims until they test their theories using the scientific method. It takes years before they can arrive at the point of being able to talk about it with some degree of certainty.
This is something we need to learn as sufferers waiting for research to be concluded. It is a great unknown; it is an exploration into a possibility, and it must be rigorously tested, modified, an re-tested until a level of certainty is obtained.
I hope they would consider people from other countries who have tested positive for TMAU. I have but it was done through Monnell and I don't know if they communicate or even know about the Trinzyme study. Anyway, I understand that we are still in the early stages of this. Thanks for posting the update Maria. It definitely gives hope and I know it makes me feel better about the future.
Any reason why they changed the funded period date on their website to January? I was looking forward to hearing some thing back this August but I guess I have to wait little longer.