July 12, 2010 Lydia E. Neilson M.S.M. Founder Chief Executive Officer National ME/FM Action Network Dear Friend: Re: Unheard Voices – My Story Are you living or have you recovered from ME/CFS or FMS? How many times have you become overwhelmed with emotions you keep up inside that come from not being believed or were not being believed? You are burdened with wanting to talk and yet not wishing to sound that you are complaining or feeling sorry for yourself. There is healing in talking and you have a right to be heard. I would like to give you that opportunity. This project has been on my mind for some time but the right opportunity never seems to present itself. However, I think that moment has now arrived. I have tentatively titled it Unheard Voices – My Story I would like to tell your story along with others, not only to help you but also to help those who are in a similar situation so that they would know that they too can survive and go on. They can learn from your experiences and solutions as you can learn from theirs. If you would like to participate, please contact me and put my story in the heading. Your contact will be treated as confidential and will not be disclosed. Please use just plain word format in your story and keep in mind that it needs to be relevant to the topic. There is no age limit.  You can send your email to me at ag922@ncf.ca.  There is no timeline on this project as of yet but if done in time I am hoping that it can be used for a fundraiser towards the cost of the 2011 IACFS/ME research and clinical conference we are hosting in September 2011 here in Ottawa. Lydia Unheard Voices - Update - July 16, 2010 (Additional Information ) Part 1 of 2 Dear Friends: First of all, thank you so much for your immediate response.  The outpouring has been tremendous and it will take me awhile to respond to you all. I have some suggestions to make when you are telling your story.  I know you're worried about the length of your story so I suggest the following: 1.  First write your story exactly as it enters your head and what you are feeling without worrying about length; 2.  Once you have it all written down, give it a rest and then return to it and look it over; 3.  Now, keeping in mind that it is going to be read by others, start editing it as if you are writing an article for a newspaper; and 4.  Finally submit it to me. For parents who have children or youth who are ill or have been ill, please let your children write their story from their perspective and feelings while parents can relate their experiences and how they dealt with their children being ill. From my own experiences in the past, I one day sat down and wrote my story.  The first thing I noticed when I started is that I had a very hard time doing it.  It brought back all kinds of hurts and emotions and what I thought would be a simple process of putting down my feelings turned into an emotional battleground. Once I completed my story and dealt with the feelings and losses  while writing, I was later able to look at it more clearly and write a summary which I still have but haven't looked at anymore.  This turned to be a healing process.  I hope it will be so for you. Lydia Unheard Voices - Update - July 28, 2010 Additional Information (Part 2 of 2)  Dear Friends: I continue to receive enquiries and stories from you and I thank you very much for taking part in this project.  Some questions have arisen and I will attempt to answer them.   * After you have written your story and you have gone over it, done your editing and you are satisfied with it, please send it in to me either through the mail, email or fax;   * You do not need to worry about spelling and grammar but before we go ahead and process it for the next phase of editing, we would check with you and send you a copy of what we plan to publish. If any changes are made after your approval, we will contact you.  At that time we will ask for your permission and approval of your story and how you wish to be identified;   * For some, English is not your first language but please don’t let that stop you from participating.  Those are things we can take care of.  As long as we understand what you have written, then we will take it from there;   * We are not here to judge you but just give you a voice and a way to express your feelings. Hope this helps. Lydia

Projects which are completed are included in our Journal of Achievements

Other Ongoing Projects

Although the National ME/FM Action Network is an independent organization, we work cooperative with all support groups and societies across Canada.   We would like to thank all of them for their ongoing support and cooperation in assisting us whenever a united front is needed.   Your suggestions and ideas are alway welcome.  Whether you are a patient or a healthy interested person and are able to volunteer some your time or expertise, please contact us. 

We endeavor to support and assist the ME/CFS and FMS communities through our numerous projects in the areas of education, advocacy, and research.