From: Lydia Neilson <ag922(a)ncf.ca&gt; Subject: [Nmefman] HOW IT IS AND WHAT MATTERS To: nmefman-contacts(a)lists.ncf.ca Received: Saturday, May 29, 2010, 6:20 PM Dear Friends: Thank you so very much for your supportive replies and I appreciate your trust which means a lot to me. We do NOT get financial assistance from the pharmaceutical industries. If we went after that, we would be rich today and I certainly would be. I have not nor has the National ME/FM Action Network ever promoted a product but we do think it is the right of everyone to know what research is being done and what products are being used, homeopathic or otherwise. All we do is bring information to all those who seek it. There are also strict guidelines by the governments that the pharmaceutical companies have to follow. We joined in name only in partnership with Eli Lily for its website Fibromyalgia: Reconnecting to What Matters. It gives us the opportunity to reach more people as without our involvement, the site will stay go up but without us having a chance to bring information to the people. What is particularly important is that a medical professional will seek out that site looking for information more readily than he/she would in a medical journal on Fibromyalgia. He/she would not go to a support group and by being present there we expose that professional to research and information which we otherwise would not have access to. We get no financial assistance from any drug company and the funds of $150,000 that we are trying to raise is to cover the cost of the conference and will not be kept by us. It is for the facilities where the conference is to be held, the medical professionals who are doing the workshop to cover their travel, airfare etc. Without funds there can be no conference. We also hope to have a French translator there for the patient conference. We would gladly obtain funds from other sources but even the ones who do not support our position are unable to provide us with an alternative. We have received much positive support for which our Network is grateful. There was a time that there was no treatment for Fibromyalgia at all and although we are still only touching the surface of what needs to be done for the ME/CFS and FMS people, at least now it has started to pay off after many years of activism by the ME/CFS and FMS communities. This interest will lead to grants which will lead to research and that is what is mandatory before a cause and treatment can be established. We thoroughly researched the ways that the medical professionals or others in the health field get their information by having meetings with them. I know that is not the way it should be but that is how it is. Lydia Lydia E. Neilson, M.S.M., Founder 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

From: Lydia Neilson <ag922(a)ncf.ca&gt; Subject: [Nmefman] HOW IT IS AND WHAT MATTERS To: nmefman-contacts(a)lists.ncf.ca Received: Saturday, May 29, 2010, 6:20 PM Dear Friends: Thank you so very much for your supportive replies and I appreciate your trust which means a lot to me.  We do NOT get financial assistance from the pharmaceutical industries.  If we went after that, we would be rich today and I certainly would be.  I have not nor has the National ME/FM Action Network ever promoted a product but we do think it is the right of everyone to know what research is being done and what products are being used, homeopathic or otherwise.  All we do is bring information to all those who seek it. There are also strict guidelines by the governments that the pharmaceutical companies have to follow. We joined in name only in partnership with Eli Lily for its website Fibromyalgia: Reconnecting to What Matters. It gives us the opportunity to reach more people as without our involvement,  the site will stay go up but without us having a chance to bring information to the people. What is particularly important is that a medical professional will seek out that site looking for information more readily than he/she would in a medical journal on Fibromyalgia.  He/she would not go to a support group and by being present there we expose that professional to research and information which we otherwise would not have access to. We get no financial assistance from any drug company and the funds of $150,000 that we are trying to raise is to cover the cost of the conference and will not be kept by us.  It is for the facilities where the conference is to be held, the medical professionals who are doing the workshop to cover their travel, airfare etc.   Without funds there can be no conference.  We also hope to have a French translator there for the patient conference.  We would gladly obtain funds from other sources but even the ones who do not support our position are unable to provide us with an alternative.  We have received much positive support  for which our Network is grateful. There was a time that there was no treatment for Fibromyalgia at all and although we are still only touching the surface of what needs to be done for the ME/CFS and FMS people, at least now it has started to pay off after many years of activism by the ME/CFS and FMS communities.  This interest will lead to grants which will lead to research and that is what is mandatory before a cause and treatment can be established. We thoroughly researched the ways that the medical professionals or others in the health field get their information  by having meetings with them.  I know that is not the way it should be but that is how it is. Lydia Lydia E. Neilson, M.S.M., Founder 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