 The Fibromyalgia Help Book:
By Jenny Fransen, R.N., and I. Jon Russell, M.D., Ph.D. |
....
CHAPTER 9: HOW TO START A SUPPORT GROUP
Support groups are very helpful in reducing the sense of isolation and loneliness that comes from having FMS. Hearing how others are managing day-to-day problems is encouraging and useful. A support group provides the opportunity to share your experience, strength and hope with others. There may already be an FMS support group in your area. To locate such a group, contact the FMS organization in your state, the Fibromyalgia Network, or the Arthritis Foundation in your state. (See Resource section [in the print book].) If there isn’t a fibromyalgia support group in your area, look for a chronic fatigue syndrome group. There are many symptoms common to both disorders, and both groups deal with similar issues. Chronic pain and illness groups are also helpful. Some people benefit from attending an arthritis support group if there is no FMS support group in their area. If you want to connect with others who have FMS, ask your physician to give your name and phone number to others who might be interested. You may want to provide cards to hand out. Physicians are often willing to serve as interim coordinators to help persons with FMS get together. However, it would not be proper to ask physicians for the names of other people with FMS. Many FMS groups start out informally over coffee to share support or to exchange information and resources about their illness. A more formally organized group, with a consistent meeting place and date (such as the third Wednesday of every month), can attract the attention of potential new members, physicians, and others. Flyers can be distributed to offices of physicians, osteopaths, chiropractors and other health professionals. Ask that the flyers be left in waiting areas, be displayed on bulletin boards, and be given to patients with FMS. Physicians and other health professionals usually will refer patients to groups that provide reliable information and demonstrate professional conduct. Ground rules can be established to help the group operate smoothly. For instance, some groups have adopted a rule of ‘’no doctor-bashing by name.’’ This protects the group legally and allows members to express anger and frustration without slander.
Flyers and brochures List the important details of who, what, when, where, why. Include the name of a person [and the telephone number or email] who can be contacted for more information. A tri-fold brochure printed on both sides of 8 1/2 X 11-inch paper will fit in physician’s literature racks. Put the name of the group near the top of the front panel so it can be easily seen. These brochures can be mailed without an envelope if you leave the back panel blank for adding labels.
New Fibromyalgia Syndrome Support Group Purpose: To provide support, education and resources for people with fibromyalgia and their family members When: Third Wednesday of every month, 7:00 to 8:30 pm Where: Mercy Medical Center, lower level conference room For more information call: Mary Smith at 555-5555. Sponsored by Mercy Medical Center
Local newspapers, radio, and television stations announce meetings under community news at no charge. Media releases should be typed. Include the who, what, where, when and why. Notices are accepted on a space available basis. Send a release for every meeting to increases chances of publication.
Prepare for meetings
Literature
The Fibromyalgia Network Lists of helpful books and articles can also be offered. See the Resource section for telephone numbers and addresses.
Speakers and Meeting Agenda Speakers can include physicians, pharmacists, health professionals, people with FMS discussing specific issues, and local experts on various treatments (sleep experts, tai chi geachers, message therapists, etc.) Most support groups seek speakers who do not charge a fee. Occasionally Group members may choose to pay speakers, with members sharing the expense... Most members want to talk with others who have FMS. Speakers should not be the entire focus of meetings. Group members can be polled regarding their level of interest in speakers, topics to be addressed, and specific support needs. Some groups invite family members to meeting...
Leadership
RESPONSIBILITIES A steering committee that meets quarterly to plan and organize group meetings should also survey the needs of the group and assess their satisfaction.
Sponsorship THE FIBROMYALGIA NETWORK OFFERS INFORMATION TO GUIDE PEOPLE IN FORMING GROUPS. THE ASSOCIATION ALSO HAS A SUBSCRIPTION NEWSLETTER FOR SUPPORT GROUPS AND STATE RESOURCE LISTS OF SUPPORT GROUPS AND HEALTHCARE PROFESSIONALS. IF YOU WANT TO BE LISTED AS YOUR GROUP’S CONTACT PERSON, REQUEST THAT YOUR NAME AND PHONE NUMBER BE ADDED TO YOUR STATE RESOURCE LIST.
Advocacy People with FMS are best qualified to do this work because they know what it’s like to live with this painful and debilitating illness. Their personal knowledge of the illness puts them at the advantage of knowing the importance of finding more effective treatments and an eventual cure. Writing a letter to a senator or representative about your experience with FMS can be helpful. Contact local Democratic or Republican headquarters for the names and addresses of your representatives. Your letter will increase awareness of MS among policy makers and let them know the importance of funding FMS research. Every voice counts. ... People with FMS can bring different talents to the cause. Some can do public speaking; others can stuff and label envelopes. Every contribution, no matter how small, brings about greater awareness of the enormous problem of this illness. Everyone is needed to make an impact. By helping this cause, you help yourself.
|
To contact us please email Barbara Peterson, Publishing Assistant, at Smith House Press
Thank you for being the 
viewer of this page.