Raising Awareness Campaign UK General Medical Council and others

The following email was sent from MEBO Research to the Medical Research Council, GMC Education and Training Committee, British Medical Association, Royal College Physicians, and Dr. Chris Steele from , as part of the Raising Awareness Campaign in the UK on 28 March 2011.

In solidarity with our UK members of persons with metabolic body odor conditions, many members of our international community are writing today, Monday, 28 March 2011, to you and to others listed below to implore you to please take notice of the much ignored and abandoned people who suffer from uncontrollable, life-devastating body odour conditions, one such condition being Trimethylaminuria, for example, We ask that you join us in our pursuit to obtain much needed research funds.

Please see the attached Testimonials some of our members have asked me to present to you today for this purpose, and other testimonials you will receive in separate emails and in the post, in which we attempt to portray the very serious psycho-social consequences of living with these conditions without hope for treatment due to a total lack of awareness in the medical community of these conditions and due to lack of research funding.

In an effort to unite sufferers from around the world with the experts mentioned below and other experts, with the purpose of raising awareness and promoting research, I have founded a Not For Profit, Limited by Guarantee Company, aspiring to become a Charity, MEBO Research, incorporated on February 5, 2009, Company Number 06810631 of The Registrar of Companies For England and Wales.

Even though we are most grateful to the renowned British experts noted below who have researched into the genetics, metabolic deficiencies, and other causes of body odour conditions,

1. Nigel Manning, Principal Clinical Scientist of Dept. Clinical Chemistry at Sheffield Children’s Hospital. Please refer to his interview in MEBO’s Blog and other educational material he has given us
2. Dr. Robin H. Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, Charles Dent Metabolic Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London. Please see his interview in MEBO’s Blog.
3. Stephen Mitchell, Biomolecular Medicine, Faculty of Medicine, Imperial College London, South Kensington, London.
4. Robert L Smith, Imperial College School of Medicine, Department of Molecular Toxicology, Div of Biomedical Sciences, South Kensington, London.
5. Mark Howard, Manager of Biolab Medical Unit, Nutritional and Environmental Medicine, London. (Please see his interview and Study in MEBO’s Blog)

as well as to other experts in other European countries, the United States, Canada, Australia, Japan, New Zealand, and other countries, we are cognizant of the barriers they have repeatedly encountered in their research efforts due to total lack of research funding that could potentially allow them to discover not only a cure for trimethylaminuria, but to also to help them identify, diagnose, and find a cure for other types of genetic metabolic disorders that produce socially unacceptable, career-destructive, and serious psychological damage.

Operated strictly by volunteers from around the globe united and organised through MEBO’s Blog, Bloodborne Body Odour & Halitosis and other international, multilingual forums noted on the Community Involvement page of this blog, MEBO has been a very pro-active company not only in the UK, but also in the United States, Canada, Latin America (see Spanish Blog), Australia, and other countries. Our primary aims have been,

1. To raise awareness in the medical community of the serious psychosocial consequences caused by body odour conditions by writing testimonial letters and emails to you and other government and private entities,

2. For the medical community to become well versed on this topic to better care for their patients by arranging the necessary testing and treatment,

3. To pursue funding for the much needed research to find the proper treatment and cure,

4. To organise Raising Awareness Campaigns such as this one today with you today, as well as other entities listed below, such as the Councils, Medical organisations, and the press listed below in pursuit of educational support in the medical community, and financial support in the scientific community to initiate much needed research.

Medical Research Council
Linda Willmott 020 73952312
14th Floor
One Kemble Street
London WC2B 4an
Linda.Willmott@headoffice.mrc.ac.uk

General Medical Council 0161 9236602
Education and Training Committee
Jane Dalacre
350 Euston Road
London NW1 3JN
education@gmc-uk.org
publications@gmc-uk.org
gmc@gmc-uk.org
gmctoday@gmc-uk.org

British Medical Association
BMJ/BMA News (weekly publication for doctors)
bmj.com 020 73874410
bma-library@bma.org.uk

Royal College Physicians
Professor Humphrey Hodgson (has published papers on liver disease)
11 St Andrews Place
Regents Park
London NW1 4LE
education-courses@rcplondon.ac.uk
02030751539

Dr Chris Steele
This Morning 11th floor
London Television Centre
London SE1 9LT
thismorning@itv.com
08000304044

Would you please assist us in raising awareness in the medical community, so that when a physician sees a patient presenting with a body odour, he or she would have heard of Trimethylaminuria and be aware of systemic body odour conditions, and would know which tests to prescribe, and which experts to consult with for additional information?

Would you please assist us by referring us to individuals, private organizations, or government entities that we could turn to for research funding into Trimethylaminuria and any other body odour conditions?

Your kind assistance in this matter would be greatly appreciated.

Respectfully yours,

María de la Torre
President and Executive Director

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

Below is my personal testimony that I sent to all the links noted above:

FROM: Maria de la Torre, MEBO Research Group
TO: Linda Willmott, Medical Research Council
DATE: 28 March 2011
RE: Testimonial to Raise Awareness in Medical Community of life-devastating body odour medical conditions

As a 54 year-old married mom of two sons, I have personally struggled with severe body odour in my family for the past eight years without finding answers from numerous well-intentioned medical doctors, including gastroenterologist, dermatologist, allergy and asthma specialist, and othorhinolaryngologist. As a result, I had no other recourse but to turn to the web to find guidance and answers.

After having read numerous research articles online from around the world, heart-wrenching posts by body odour sufferers in many Body Odour/TMAU forums, and after watching various news and talk shows regarding this matter, it seems to me that most cases don’t fit the traditional idea of body odours as being an external skin or localised oral problem. By that I mean that it is bloodborne and going through the whole system, to be released through the pores and any other way it can. I am also amazed at the numbers posting on the various body odour boards. It seems as if it is far from a rare problem, although it seems to vary in degrees.

I began to see a pattern emerging in numerous parts of the world suggesting that body odour is a medical condition that usually arises from more than one cause in each individual sufferer, such as metabolic and/or gut bacterial imbalance, and possibly other causes yet to be discovered, many of which may be genetic in nature. These multiple causes in one individual sufferer may vary from another sufferer, thus making it extremely difficult if not impossible for sufferers to find a lasting solution to their particular body odour condition without additional research and professional guidance.

Finally, for the first time in 8 years, I found literature written by experts of many countries explaining the medical conditions that produce body odour conditions, and as sufferers began to unite from around the world, we began to inform each other about which very few labs actually test for Trimethylaminuria, and the very “primitive” management protocols used to attempt to control its symptoms, though not always effective.

What was most striking to me is that most everyone on the body odour Boards claim that their respective medical doctors had no idea about the cause or nature of body odour conditions, and most had to print online professional literature to take to them to teach them about it. There is a breakdown in communication in the medical community that must be addressed. Even though much more research is needed to identify, understand, manage, and cure all types of body odour conditions, all efforts by Medical Councils must be made to disperse the existent information to each and every medical http://www.blogger.com/img/blank.gifphysician.

María de la Torre
Founder and Executive Director
MEBO Research

Please see Part 2 here