BREAKING NEWS : On October 21, 2011, ten (10) body odor related uncertainties / questions have been published in the October report to the UK National Institutes for Health Research (NIHR) Database, under the category of ‘Nutritional metabolic and endocrine disorders > Trimethylaminuria’(see left column).
The following questions are the nine (9) uncertainties 'From patients' and one (1) 'From professionals' published in this NHS Evidence website of the National Institute for Health and Clinical Excellence (NICE).
From Professionals: (Click on 'View Details') Is there a bacteria responsible for producing trimethylamine (TMA) in the gut?
From Patients: (Click on 'View Details' of each question)
- Do high plasma levels of trimethylamine (TMAO) gut flora metabolism of phosphatidylcholine cause cardiovascular disease?
- In-vitro screening to test whether ataluren (PTC124) can correct functional consequences of premature termination mutations of the Flavin containing monooxygenase 3 (FMO3) gene?
- To what extent are individuals with trimethylaminuria, and lack functional hepatic flavin containing monooxygenase 3 (FMO3) substrates, unable to oxidize other odiferous FMO3-specific substrates and does this contribute significantly to body odour?
- Which bacterial species in the human intestine are responsible for the generation of trimethylamine?
- Would a comprehensive biochemical screening test for trimethylaminuria help patients?
- Do probiotics significantly reduce trimethylaminuria (TMAU1) producing bacteria in the human intestine and does this result in clinically relevant decreases in TMA production, and thus body odour, in patients with TMAU1?
- Enzyme replacement therapy for trimethylaminuria (odour problems)
- How effective are antibiotics for trimethylaminuria?
- How effective is a choline elimination diet for treating trimethylaminuria?
HOW DID THIS COME ABOUT? On March 2011, our very own, Karen James, launched a campaign, and using her own words in a post she wrote for this blog, “…to contact the main British medical organisations and health politicians and appeal to their humanity through persuasive letters, e-mails, and follow-up phone calls.” Sufferers from not only the UK, but from other countries, joined in and sent their emails/mails on targeted dates set up by Karen to present testimonials to these authorities. Eventually, Karen put me in contact with Mark Fenton, UK Database of Uncertainties about the Effects of Treatments (UK DUETs), Project Manager, NHS Evidence, National Institute for Health and Clinical Excellence.
By July 2011, Karen was already raising awareness on a high-profile TV show in an 8-minute interview, as the wheels in the British General Medical Council (GMC) and other agencies were turning; and eventually, she was referred to Mark Fenton, Project Manager of UK DUETs. She and I began to work with Mark with the help of an expert in FMO3 in the UK to create a list of questions or uncertainties to be published in the UK National Institute for Health and Clinical Excellence (NICE), DUETs. Researchers are welcome to make reference to these question if they wish to apply for government or private research grants to them.
Since as far back as the early to mid 1990s, when a woman told her story in a British documentary about her bromhidrosis and hyperhidrosis, and in 1999, when Alice Mata wrote her book, When Bathing is Not Enough, sufferers have attempted bear testimonials to tell the world of the tribulations a sufferer of body odor encounters on a daily basis in hopes of raising awareness and thus initiating change. Other sufferers have told their stories in books such as, Shattered, The Foul Body Odor that Almost Killed Me, and an Anthology, OUR JOURNEY: OVERCOMING THE STIGMA OF THE INVISIBLE MONSTER, and in televised programs and YouTube videos, such as those referenced in this blog under keyword, Testimonial/Evidence.
Other aspects of our international community’s efforts to raise awareness involves email/mail campaigns to targeted government agencies and the medical community. These projects have included the Raising Awareness in the Mental Health Community regarding the Olfactory Reference Syndrome (ORS) diagnosis, and MEBO's Technical Consultant designing flyers to be printed by sufferers throughout the world and left at strategic places, like libraries, schools, doctor’s office, hospitals, etc. Each and every sufferer is encouraged to attempt to communicate with his or her physician by providing the physician with published literature on body odor conditions. These are only some ways to raise awareness of Body Odor Conditions in the medical community, and sufferers are encouraged to "think outside the box" to come up with many more.
María de la Torre
Founder and Executive Director
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