February 2009
Hi to everyone!
I hope everyone had an enjoyable Christmas season and is doing well despite the cold weather! The fourth Saturday of February 2009 marks the one year anniversary for the Lane County CFS and Fibromyalgia Support Group. It has been quite the learning experience, and a very enjoyable one. I’ve really appreciated getting to talk with all the wonderful people I have, learning how people are coping with these conditions and being able to both say and hear the words “I understand”.
When I started this group, I had a few goals.
I wanted this to be a resource where people with CFIDS and fibromyalgia
could find support and information. If
one person has learned one thing from these efforts that has made their life
better or if one person has felt that there is someone else out there who
understands, someone who knows they aren’t crazy or lazy or mentally ill,
someone who “gets it”, then all the effort has been worth it.
My other goal has to been to advocate both individually and as a group for community awareness, patient care and patient rights. Despite the presence of OHSU (particularly for fibromyalgia patients) , two decent-sized local hospitals, and many traditional and complimentary health care providers, there is a long way to go in Oregon to gain recognition and rights for CFIDS and fibromyalgia patients, let alone proper treatment. CFIDS and fibromyalgia should not be treated differently than any other debilitating illness when it comes to access to disability benefits, insurance coverage, assignment of doctors, treatment by other medical professionals, and pain management.
Many of you are aware that there has been several other CFIDS and/or fibromyalgia support groups in the community. As far as I know, none of them are still active, and when I talk to people about them, they have all said the same thing- the person who ran it got no help, and then when they had a flare or down time, the group fell apart.
I am a patient with both of these conditions. I also am a homeschooling mother of five who, like most of you, is trying to make ends meet. I cannot continue to take the total organization and financial burden for this support group. Some of you have given donations, which I greatly appreciate. At this point, although we have had a fairly steady turnout in numbers, we have not had anyone who has came to more than 2 meetings. I also have not had anyone who has shown a solid interest in either volunteering or donating, or who seems interested in doing public awareness or other activities.
I believe people support what supports them. I understand many- probably most of you- cannot give money, and honestly, that concerns me much less than people not wanting to give time. I also realize that not everyone- in fact, maybe most of you- are not in the health to give time or energy, and believe me, I understand.
Because I believe people support what supports them, I want to find out what people who have contacted me are thinking. I have had enough response to where I certainly feel there is a need for this in Lane County, but I want to know-what are you looking for? What would you like to see? It may not be something I am willing or able to give, but I would like to know. So instead of a newsletter this time, I am sending out a survey that I would appreciate people taking the time to fill out and send back. If you receive the newsletter through email, you can either send it as a Word attachment or copy and paste into the body of the email. Please, no PDF or other attachments. If you receive this letter though the mail there is a self-addressed stamp envelope to send it back in. I would appreciate it if you would take the time to fill the survey out and continue it. If you do not respond to the survey, I am going to remove you from the mailing list, unless you specifically contact me to request otherwise. I hope you understand that I have received many calls, but due to the cost of printing, postage, etc I have to have some way to update my contact information on a periodic basis. I will still email out meeting updates and update the web page and the Register-Guard, as well as keep current meeting and contact info with the CFIDS Association, the National Fibromyalgia Association, and the FM Partnership.
I hate to even approach this. I am usually the person who cannot afford the donation- I know what that feels like! However, as the group leader, I need to know where people are coming from and where they would like to see this group go, because it is something that I have done because I want everyone to learn and benefit, even myself!
Thank you very much,
Sara Stewart
The Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group is a non-profit, non-partisan educational, support, and advocacy group for patients who have CFIDS and/or fibromyalgia. We are members of both the CFIDS Association of America and the National Fibromyalgia Association. We do not have 501c3 status at this time and donations are not tax deductable. This support group will meet every 4th Saturday from 3:30-5 at the Eugene Public Library. The group will meet in the Singer Room if possible but this is subject to availability. We do not charge membership fees or anything else for this group; however, donations to help with costs are always appreciated. Donations can be sent to the address listed below.
You have received this because you have shown interest in the support group. If you no longer wish to receive updates or information, please email lanecountycfsfibro@yahoo.com and put “unsubscribe” in the subject line.
