Re: [Nmefman] ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHATMATTERS. LOOKING AT THE BIG PICTURE

Dear Friends: Some of you may be uneasy about the National ME/FM Action Network lending our support to a pharmaceutical company, in this case, Eli Lily, and its involvement with the website http://www.reconnectingtowhatmatters.ca The Canadian Pain Coalition, FM-CFS Canada and the National ME/FM Action Network are able to bring its websites and education and awareness to more places through this website and reach more people we otherwise could not reach for a long time. What we want for both ME/CFS and FMS is treatment, awareness and research. Before a product comes to the public, it is researched for a very long time and then was researched for Fibromyalgia. Before the pharmaceutical companies got interested, no one heard about Fibromyalgia. Now commercials about pain include Fibromyalgia. What is important is that once the pharmaceutical gets interested in an illness, the illness gets more accepted by the doctors they visit. Pharmaceutical representatives visit doctors' offices and present their products for treatments for illness. Many doctors are skeptical but once a treatment is available, the doctor now will pay more attention, becomes aware and will spread the news with other doctors. As commercials are now made, patients who have gone without diagnosis will now have more information than they did previously and more likely to go see their doctor with more knowledge as to what they may be suffering with. In 2003, when we got the panel of doctors together in Toronto for both the Working Case Clinical Definition, Diagnostic and Treatment Protocols, Consensus Documents were established in 3 days of a panel for Fibromyalgia and one for ME/CFS. Both those panels were experienced doctors. We were unable to get financial help from the government or any other source to bring those doctors to Canada for these documents. The Canadian Definition has become known as the best of its kind for diagnosing and treatment. The summary ME/CFS Overview has been printed in other languages and is now also available on the Public Health Agency website. The reason we were able to bring these doctors to Canada and some came from Europe as well as from the U.S. and other parts of Canada was because a pharmaceutical company, Crystaal at that time, believed that a clinical definition and diagnostic and treatment protocols were important and believed in the National ME/FM Action Network. They paid for the transportation, hotels and meals and everything else the doctors needed. Everything was professionally done and not once was any product pushed. They are not permitted to do so. This same definition was used by the Whittemore Peterson Institute in the XMRV blood sample research. This research opened up the doors and awareness to more research which is still continuing. This definition could not have been used if we did not have the means of bringing the doctors to Canada for that research and consensus. There are also many provinces i.e. Saskatchewan, Manitoba, the Atlantic Provinces and the Yukon Territories where people are not being diagnosed and not getting any help or support. By holding patient sessions and by pharmaceutical companies visiting doctors' offices, all that can change and the more exposure our illnesses have the more acceptance and research. It is important to remember the big picture and how best to spread awareness, understanding, education and research. Lydia Lydia E. Neilson, M.S.M. Chief Executive Officer National ME/FM Action Network 512 - 33 Banner Road Nepean, ON K2H 8V7 Canada Tel. (613) 829-6667 Fax (613) 829-8518 E-mail: ag922(a)ncf.ca Web: http://www.mefmaction.net _______________________________________________ Nmefman-contacts mailing list Nmefman-contacts(a)lists.ncf.ca http://lists.ncf.ca/mailman/listinfo/nmefman-contacts