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Tips on How to Start a Fibromyalgia Support Group in Your Area - From the Tillamook County, Oregon, FM Support Group

by Marie K. Ritzel, Founding Member
June 20, 2007

Tillamook County, on the Northern Oregon Coast (and home of Tillamook Cheese), has started a Fibromyalgia support group with the help of the Tillamook County General Hospital . The group has been going about 18 months, and is constantly growing.

The group has monthly meetings, with speakers and/or discussions of some of the topics we have read about or had presented to us. Some of the topics that have been presented by speakers include:
n Fibromyalgia and nutrition;
n Depression from pain and inability to do life’s daily work;
n Massage therapy and Fibromyalgia;
n And how physical therapy helps with Fibromyalgia.

This is a community based group, generally assisted by Tillamook County General Hospital. The hospital provides newspaper coverage, brochures, and outreach to the medical community, in addition to providing a conference room and facilities for the meetings.

If you are interested in starting such a support group in your area, here are some tips for getting started:

1. Start talking about it! This is the most important step. My best results came because I mentioned the need for a FM support group to the physical therapist I was seeing. She agreed it was important and worthwhile. She then talked to her supervisor. And the rest is history.

2. Find a location. See if there is a hospital in the area that will support the group. Or a library, or other community-accessible conference room. If the hospital had not agreed to support us, I had two other locations I was ready to call to see if we could use their conference rooms.

3. Make flyers. Distribute them to doctors’ offices and libraries, pharmacies, senior centers, physical therapy locations, massage therapists, etc. Yes, this took some footwork. I faxed a lot of them right from my computer. Oh - and senior housing is another good place to have flyers. Also, many senior housing complexes have conference rooms that you might be able to use. So do senior centers.

4. Get it in the newspaper. We are lucky because our hospital is very community oriented and puts information about our group and meetings in the paper, along with all other scheduled programs for the month. Many of the people who’ve attended meetings and joined the group have come because of this. But articles in the paper will probably do just as well. My name and phone are in the newspaper articles and notices [and in the hospital website's information about the group].

5. Don’t expect a huge turnout immediately. Our group has grown slowly. Our first meeting only had me and one other person, but we started talking and brainstorming, and each of us knew other people to contact. And so we grew and continue to grow. Don’t be discouraged if you start small. Small is good.

6. Create an e-mail list and a phone calling list. Find someone in the group who will help with each.

7. Get others involved as fast as possible in brainstorming on meeting topics, speakers, etc. The more people who buy into the group as being a “WE” group, the more participation there will be. And remember, you can’t do it all. It must be a “WE” group to survive.

8. Save all the handouts that you get for each group to give to the new people. One lady in our group volunteered to be the handout person. We give her paper to make copies of the handouts for the newbies.



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