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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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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."

see this post for more details

Sunday, November 2, 2008

The Washington Taste & Smell Clinic : A template for a Body Odor & Halitosis Clinic

The history of the Taste and Smell Clinic in Washington is an interesting story, mainly because it could be a blueprint for a Body Odor and Halitosis Research and Treatment Clinic. It is ironic that both problems have to do with smell, and the nice one has a 'home' in society, whereas the 1% or more of body odor and halitosis sufferers who seem to be more in need are 'homeless' in this day and age. Ask anyone with a loss of smell if they would rather have fecal body odor, and vice versa; and compare suicide rates. For obvious reasons, bad luck, and perhaps medical ignorance, it can be deduced how the nice one is recognised by the system whilst the other is still unknown.

Perhaps it was also down to the doctor running the clinic, Dr Henkin, even more than the system. It was originally set up by the NIH in 1969, but through Dr Henkin it later became private and treats patients from throughout the world, possibly because of the unexpected need for such a service. All the right terminology appears in the pages about diagnosis (metabolism, zinc etc). Research papers are published. It sounds like a center of excellence. Basically, the NIH could set up a replica for BO & Halitosis research and treatment using the same model ... and would likely be shocked at the need, especially metabolic odor conditions. Sadly it's a chicken and egg situation.

With the power of the internet, perhaps we can come up with a plan to influence the NIH (petition ? co-ordinated emails ?) to make them aware of the need for a BO & Halitosis clinic, especially for metabolic body odor and/or halitosis, which is obviously 'unrecognised' by the 'system'. But the Clinic could investigate all forms of BO and halitosis.

Perhaps contacting the NIH ORD Undiagnosed disease Program would be a starting point until a plan of action can be put together. As a community we will come up with solutions.

Did you phone the Undiagnosed Diseases Program ?

The Taste and Smell Clinic is the most successful clinical program in the world devoted to evaluation and treatment of patients with taste and smell dysfunction. Thousands of patients have been treated at The Clinic since its inception. Patients come from all over the world to achieve relief of their various complaints of both loss and distortion of taste and smell. The Taste and Smell Clinic in Washington, D.C. was the first clinical facility in the world established to evaluate and treat patients with dysfunction related to taste and smell. This program was initially set up as part of the clinical research program of the National Heart, Lung and Blood Institute of the NIH in Bethesda, MD. In 1969 it became the clinical arm of the Section on Neuroendocrinology of which Dr. Henkin was the chief. Both inpatients and outpatients were evaluated and treated in this program and studied on a metabolic ward administered by Dr. Henkin. To measure taste and smell function the first systematic tests to measure taste and smell function in patients with these problems were developed and put into practice. To understand the basic mechanisms of taste and smell physiology, systematic, fundamental studies of zinc and copper metabolism in normal volunteers and in patients with a variety of diseases were undertaken and continued for the next 10 years. Through these metabolic studies and use of radioactive and stable zinc isotopes the first basic knowledge of zinc and copper metabolism in patients with taste and smell dysfunction and other clinical disorders including cancer, neurological diseases, endocrine, and metabolic disorders, nutritional and genetic abnormalities of various types was established...

With continued growth of the clinical and research programs more space and facilities were required. The Taste and Smell Clinic transferred to the private sector in 1986 while maintaining its relationships with NIH, the Georgetown University Medical Center and recently the George Washington University Medical Center. Because of the move into the private sector a new commercial entity, Sialon, was established to deal with the novel techniques developed at The Taste and Smell Clinic. Many of these technologies been granted US patents and are in the process of being developed by various private companies in the US and abroad. These technologies involve novel modalities to correct various aspects of taste and smell disorders and include treatments for loss and distortion of taste and smell function, disorders of oral cavity sensation including lingual and oral burning, and disorders of perception of local and systemic odors related to body odor.


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