Hi to everyone!
I hope you’re enjoying the end of your summer and staying as comfortable as possible! This is the first newsletter for our group. The purpose is to keep people informed as to what is going on with the group and to hopefully provide some useful information at the same time.
Our meeting is on schedule to be held the fourth Saturday of the month as always. This fourth Saturday is September 27th. This meeting we will be discussing common medicines for CFIDS, fibromyalgia, and chronic myofascial pain (CMP). Bring your questions!
Potential topics for future meetings include: trauma and chronic illness, exercise and CFIDS/FM, common co-morbid conditions and how they affect treatment, and complementary and alternative medicine and CFIDS/FM. Of course, we will always have open time each meeting for talking and sharing with each other.
As most of you know, my baby is due mid-December. Since I will be busy in December, and since our normal meeting time is only three days after Christmas, we have two options; to either move it to the first or second Saturday of the month, or to skip the December meeting. If anyone would be willing to lead the meeting if there is enough interest in having one, please contact me. There are also tentative plans in place for a holiday potluck with a gift exchange in November.
In October, the National Fibromyalgia Research Foundation is holding a conference in Portland, OR. There will be a free patient event held from 10-3:30 on October 4th. It’s at the Portland Waterfront Downtown Marriott Hotel, 1401 SW Naito Parkway, Portland 97201
Lunch will be provided as will the 2008 Oregon Fibromyalgia and Pain Resource Guide for Patients. Pre-registration is requested. For more information or to pre-register go to http://www.fibrofolksor.org or call (503) 595-8354.
September is Pain Awareness Month.
This is an excellent time to draw attention to the pain CFIDS and fibromyalgia patients live with daily. As many of you might be aware, Oregon Health Plan does not cover CFIDS or fibromyalgia. Many pain management or other specialists will not accept patients with these conditions. This month is a good opportunity to advocate for CFIDS/FM patient rights. The squeaky wheel gets the grease, so let’s squeak away! Here are some simple things you can do:
Write a letter- There are many potential topics you could address; the lack of services for people with these conditions, the importance of pain management, any personal stories that pertain to this topic, the problems with access to pain management, a desire to make people aware of these conditions, thanks for a particular professional or service that has helped you, or anything else that you feel is important. Letting our voice be heard is important, and every call made or letter written contributes to helping others.
The Register-Guard
Letters must be 250 words or less, and email is the preferred submission format. Contact information is:
Mailbag
P.O. Box 10188
Eugene, OR 97440-2188
Fax: 338-2828
E-mail: rgletters@registerguard.com
You also can write a letter to your representatives and Congressmen.
Congressman Peter DeFazio
151 West 7th, Suite 400
Eugene, Oregon 97401
Phone: (541) 465-6732
http://www.house.gov/formdefazio/contact.html
Senator Gordon Smith
Wayne Morse Federal Courthouse
405 East 8th Avenue
Eugene, OR 97401
Phone: 541.465.6750
Fax: 541.465.6808
http://gsmith.senate.gov/public/index.cfm?FuseAction=Contact.Home
Senator Ron Wyden
405 East 8th Avenue
Suite 2020
Eugene, OR 97401
(541) 431-0229
http://wyden.senate.gov/contact/
The Governor's Advocacy Office
This office deals with two important areas: access to care problems for OHP clients, and pain management concerns for people living in Oregon. I wrote a very detailed letter expressing my concerns both with the current OHP policy and with the lack of proper pain management for CFIDS and FM patients, particularly in acute care situations, where I have heard many experiences that give me concern. I got an immediate response, which was very encouraging. If you receive Oregon Health Plan, or if you have had problems relating to pain management (being refused by primary care doctors since you’re a chronic pain patient, denial of treatment for pain in an acute care situation, being told that your conditions are not that painful or that there is nothing that can be done for you with pain management, etc.) this is an excellent department to write to.
The Governor's Advocacy Office, DHS Ombudsmen and Children's Ombudsman can be reached by calling (503) 945-6904, or toll free at 1-800-442-5238. There are eight incoming phone lines, if staff is unable to speak with the caller a message can be left on the voice-mail system.
You may also write to Naomi Steenson, Governor's Advocate and Children's Ombudsman by e-mail at dhs.info@state.or.us .
Take part in the Power over Pain campaign-
The American Pain Foundation is holding a Power over Pain campaign, designed to bring awareness to chronic pain. They have many ways to get involved. More information can be found at http://www.painfoundation.org/poweroverpain/default.asp?file=getinvolved.htm
There is also an advocacy toolkit and some useful pain management documentation tools at http://www.partnersagainstpain.com/patient-advocacy/patient-advocacy.aspx?id=5
If you are having problems with pain management, this is an advocacy group that may prove useful. There is a twenty five dollar annual membership fee, but no one is turned away due to inability to pay.
The National Foundation for the Treatment of Pain
P.O. Box 70045 ~ Houston, Texas 77270-0045
Phone: (713) 862-9332 ~ FAX: (713) 862-9346
https://www.paincare.org/index.html
September 8-14 was National Chronic Illness Awareness Week.
National Invisible Chronic Illness Awareness Week is held annually in September and uses this forum for online seminar events on topics about living with chronic illness. It is held exclusively on-line to be accessible to the homebound. Seminars include speakers on subject of relationships, advocacy, disability application assistance, faith, parenting, college and career and emotional hurdles. Although this is a Christian-based organization, there are a wide variety of speakers from a wide variety of backgrounds. The archived programs can be listened to at http://www.restministries.org/invisibleillness/conferenceroom.htm
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.
Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group
3092 Delta Pines Drive
Eugene, OR 97408
(541) 341-1355
lanecountycfsfibro@yahoo.com
