Fibromyalgia Conference Learning 101

Back to Basics is always a good place to start when beginning a new endeavor. We hope that you might benefit from our experience giving our First Annual Fibromyalgia Conference on May 12, 2007. Take heart: the lessons aren’t that difficult!

Before you begin, find your passion. If you want to give a conference bringing together presenters from a variety of therapies that will benefit yourself and others, do it! It’s fun! We had a great experience, positive feedback, and a “track to run on” for 2008. If you love helping others, if you recognize the pain and fatigue of Fibromyalgia, and if you know people who can help, you have the recipe for success. Here’s the information we learned that we’re applying as we plan for our next conference. We hope it helps you, and we hope that you’ll share your results with us.

1. Stay close to your Medical Advisor. Our Medical Advisor for our Fibromyalgia Support Group has been with us for 23 years. He is a physical medicine physician, and very knowledgeable about Fibromyalgia. As the Advisor, he has been able to provide the Support Group with meeting space at St. Peter’s Hospital in Albany, New York. When the International Institute For Human Empowerment, Inc., of which I am the Founder and Executive Director, as well as a Fibro patient, decided to hold a Fibromyalgia Conference, it was possible because of Agnes Welch, Support Group Founder and Leader; Betsy Shearer, CoLeader; and Dr. Jonathan Cooper, Physiatrist and Medical Advisor. With this collaboration and the support of Price Chopper, our local grocery corporation which provided their Community Room complete with audio-visual technology, we jumped into the fibro fray, happy and with little reservation.

What we learned: There are many people who want to expand their businesses by serving the Fibromyalgia family. However, not all are reputable or promote proven medical treatments. Caution must be exercised to prevent Fibromyalgia patients from becoming victims of those who want fame and fortune promising questionable “remedies”. To our surprise, these people seem to come “out of the woodwork” when they hear that there is to be a conference. Even the fact that our conference was free to the public and physicians and therapists donated their time on a Saturday in May did not deter some who would have been happy to promote their products and services. By staying close to your Medical Advisor, you can be assured that you allow only those people of whom your Medical Advisor approves.

2. Develop a screening process for Presenters. Our Conference Committee established a process for selecting presenters for our conference. We decided that it would be advisable to have any potential presenter first speak to our Fibromyalgia Support Group. Some of our chosen presenters were already known from previous presentations, so that requirement had been met. A few were known well to our Medical Advisor, and so it was not necessary. Of course, keep in mind that we didn’t decide for sure to do the Conference until March, and we had only until May 12 to complete the effort! However, this year we have the advantage of last years presenter evaluations, as well as time to screen new potential presenters by first having them present to our group.

What we learned: Because of our tight timeline, we did not have time to follow completely our own process. Experience is a good teacher, and we learned that it was essential to do so in the future. For example, although this was not our experience, we realized that a very knowledgeable speaker may be a boring presenter. And even good speakers need to know how to capture an entire audience, including dealing with potential interruptions from the audience. Watching presentations at your Support Group can provide you with key information such as how well the presenter interacts with the audience, whether they are prompt and well-prepared, and whether they seem to truly understand the Fibro experience.

3. Don’t delegate the important stuff. It’s important for your Conference Committee to actively communicate with health writers for newspapers and television. Watch to see if any news personalities have gravitated toward special reporting on Fibromyalgia, or have done special reports on specific illnesses or on broad wellness programs. Be careful regarding those who advocate only certain strategies as they may not fully address the broad spectrum of coping strategies including medications, physical therapy, occupational therapy, assistive devices, yoga or other appropriate exercise programs, aqua therapy, and other strategies recognized and approved for Fibromyalgia. Check to see if your media will do public service announcements. Leave your flyers in public places like bookstores, coffee shops, and libraries. Don’t leave this critical step up to someone else; be actively involved. This may provide you with other wonderful opportunities to assist with trainings, be interviewed, or guide your media to the people and resources that will assist with Fibromyalgia awareness.

What we learned: Marketing a conference may be as important as all of the other planning. Like many creative folks, we devoted less time to this aspect and therefore missed several opportunities to reach out to media and organizations in surrounding communities. This year we will be diligent in getting the word out so that more patients and caregivers can learn about services that can improve their quality of life.

4. Try to make your Conference free with a suggested donation. You can choose many ways to fund your conference, but keep in mind that many people with Fibromyalgia are no longer able to work, and may not receive Social Security Disabiltity or any other financial assistance. These people need information, but may not be able to contribute financially. By approaching businesses for support, and medical and legal professionals for a donation of their expertise and time, you can bridge a huge gap that may mean the difference between existing, and living fully, for patients in your community. Encourage everyone to come. Use them as your ambassadors for your next conference!

What we learned: Participants were so grateful for the information and access that they wanted another conference! We asked only for donations, and still managed to cover our expenses. The contributions of presentations and question and answer sessions by the professionals was so valuable that it would be difficult to assess. Who can put a price on health information and access? The information was invaluable to those patients and caregivers who needed it. Your contribution of a Fibromyalgia Conference will be important to your community as well. Keep in mind that countries flourish on volunteerism, and don’t apologize for asking medical professionals to donate their presentations. We were overwhelmed by the outpouring of support. It warms our hearts simply to remember.

5. Provide opportunity for structured feedback. Create a feedback form with opportunity to evaluate each presentation. If at all possible, ask a professional evaluator, such as someone from a local college, to assist with all feedback and evaluation forms. Then have the information collated and a final report written that can be distributed to the presenters, as well as to future potential funders. By asking the participants what they felt was valuable, and what could be done for improvement, you can have important feedback to plan your next conference.

What we learned: Participants were pleased to provide feedback. Here is the summary report prepared by our professional evaluator, Ruth J. Kellogg, Ph.D. It is quoted directly here for you to see that our effort was appreciated, valued, and met a true community need.

The International Institute For Human Empowerment was innovative and proactive in sponsoring this Fibromyalgia Conference and meeting a specific and defined health need locally.
The First Fibromyalgia Conference was a huge success, as indicated by the strong ratings and the positive comments.
The Fibromyalgia Conference was well organized and included a variety of presenters who were well received by the participants.
Participants enjoyed the opportunity to network with others who had similar medical conditions.
Participants learned about different forms of therapy, alternative treatments, and ways to reduce pain.
Resource materials were useful and appreciated.
Offer another Fibromyalgia Conference of this type in the future.
For a future Fibromyalgia Conference, provide more hands-on experiences for participants, more break time, and more time for interaction with presenters and with other participants.
Participants felt empowered and encouraged by gaining a better understanding of fibromyalgia and suggestions for a better life.
One comment sums up the Fibromyalgia Conference: “An incredible conference! The first of any conference is never this well planned, organized, pulled off as this; WOW!”

If we could do it, you can too! Good luck!

This article was prepared for the National Fibromyalgia Association at the request of Elizabeth Deffner, Executive Editor, FMAware by:
Sue Kidd Shipe, Ph.D.
Executive Director
International Institute For Human Empowerment, Inc.