GREAT THINGS ARE HAPPENING
WITH THE UK RAISING AWARENESS CAMPAIGN
WITH THE UK RAISING AWARENESS CAMPAIGN
It has been a pleasure and an inspiration working with Karen James, as she is truly a great "ambassador" for our international community. Karen spearheaded the mail/email 'Raising Awareness Campaign UK General Medical Council (GMC) and others'' in March 2011, and has been relentlessly following up with emails to the proper authorities until she has managed to get a few very important steps accomplished through GMC. These accomplishments will be highlighted in future posts as publications are being made by the Royal College of General Practitioners (RCGP).
These accomplishments will be highlighted in future posts as publications are currently being made by the Royal College of General Practitioners (RCGP)...and UK DUETS.Mark Fenton, Project Manager of the UK Database of Uncertainties about the Effects of Treatments (UK DUETS), has also been very instrumental in helping us prioritise new research questions/uncertainties, to assist us in obtaining research. By publishing our questions in their Database regarding body odor conditions, NHS is validating our concerns and our need for additional research, and thus, raising awareness. We consulted with experts in the TMAU field, who have been very willing to help our community, to assist us in forming these question, and they are finally compiled to everyone's satisfaction. As soon as they are entered in this Database, we will be posting more about it in this blog.
I asked Karen if she would like to tell us a little about her plight living and dealing with this condition to post in MEBO's Blog, and this is what she says,
My initial inspiration for wanting to work towards bettering the lives of malodour sufferers originally came from my frustration; having searched for over a decade for a reason for my appalling odour, I was eventually diagnosed with TMAU and then...NOT CURED! I also discovered that I was not alone and that I was one of many invisible people with an odour problem. I was outraged to find that odour conditions were considered an awkward taboo among the medical communities and decided that I should be invisible no more. I truly believe that if we work collectively and persistently we can change things. I am very disciplined in trying to manage my odour but cannot control it at all with the treatment protocols currently on offer. My only consolation is to try to change things for future generations of people like me.
On finding Maria and learning about the incredible things she was doing in the USA, I was inspired even more and found that, as a team, we could collaborate most effectively and combine different strategies to get things done. My work is very low level in comparison to that of MEBO Research: I try 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. Then Maria reinforces my efforts by contacting the same people and delivering a much more slick, scientific, professional message in the name of a registered charity. It works!! Somehow, we have managed to capture the interest of some important organisations and it has been a real pleasure to find a few committed, compassionate individuals among them (such as Mark Fenton of DUETS) in our search for recognition. I am truly grateful for their reactions to my persistent e-mails and also to the team of professionals who liaise with Maria to help our cause. Maria's efficiency, knowledge and dedication has helped us all and her positivity always makes me want to do more. And we will do more....
Karen has also represented us in the This Morning Show of ITV in the UK, and did a fantastic job at it. Thank you Karen. You are truly an inspiration to us all.
María de la Torre
Founder and Executive Director
A Public Charity
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