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Advocacy

Posted By anchorwave On April 15, 2011 @ 5:50 am In | No Comments

Achievements | Quick Facts | Letter Writing

Achievements

Awareness and advocacy efforts have paid off. Doctors are beginning to recognize that fibromyalgia is real and more physician education programs on the condition are becoming available. Patients have done an amazing job to promote progress on fibro!

In 1993, not a single project on fibromyalgia was funded by the National Institutes of Health (NIH), the branch of the U.S. government that oversees awards for biomedical research. During that year, Fibromyalgia Network began working with patients across the country to stir up a grassroots lobbying effort. The following year, we sponsored fibromyalgia scientist I. Jon Russell, M.D., Ph.D., to submit written and oral testimony to both the House and the Senate regarding the pressing need for research in the field. For the next four years, Fibromyalgia Network, in collaboration with patients across the States, urged Congress to encourage the NIH to fund additional research on the condition. Each year, Fibromyalgia Network editor Kristin Thorson made three to four trips to Washington, D.C., to meet with legislative aides of Congressional Members serving on the subcommittee that held the purse strings to the NIH. And each year, language was passed in both the House and the Senate to urge the NIH to spend more money on fibromyalgia research.

The NIH was slow to acknowledge the Congressional language on fibromyalgia, with the total spending on this condition tallying to roughly one million dollars in 1996. In 1997, Fibromyalgia Network turned up the heat several notches. In addition to lobbying Congress, Fibromyalgia Network led a campaign that targeted the higher-ups at the NIH, urging them to give more than lip-service to fibromyalgia. The plan was to get the NIH to add fibromyalgia to the special emphasis panel (SEP) that already existed for chronic fatigue syndrome. An SEP is an ad-hoc committee that meets three times a year to review grant applications on a specific medical condition for which it exists (in this case, it was chronic fatigue syndrome). The objective was to have fibromyalgia added to its focus because of the substantial overlap of the two syndromes. Whenever a medical condition is poorly understood, or if it is not highly regarded by the scientific community (both of which were true for fibromyalgia), then grant applications tend to fall through the cracks at NIH. The end result is that proposals are not funded, and researchers in the field decide to move on to other conditions for which funding is more readily available.

After the chronic fatigue syndrome/fibromyalgia SEP became official in 1997, the number of studies funded on fibromyalgia have slowly increased. Today, an estimated $10 million is spent on fibromyalgia by the NIH each year. Many of the projects funded by the NIH on this condition are making a true difference in determining the physiological mechanisms responsible for the many symptoms of this condition, but not all of them are patient-relevant.

Inroads have been made, but there is still a great deal of work to be done. While you may think that you are just one person and your voice is too small to be heard, this is just not the case! In fact, it is essential that you write to your elected officials and to the NIH. That’s how grassroots lobbying exerts its impact. The greater number of people who write (snail mail and email) and call, the more impact we have. First, you should be aware of many important facts about fibromyalgia, which are available below as “Quick Facts.” How to compose your letter is also described under “The Basics of Letter Writing,” and it would be a good idea to include the Quick Facts along with it. If you are not sure who to address your letter to, a website linking you to this information is provided below. In addition, information on one of Fibromyalgia Network’s past advocacy efforts is provided to help you get started on your own advocacy campaign.

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Quick Facts

Fibromyalgia Fact Sheet (PDF) – Condensed information on fibromyalgia, including demographics, disability studies, research findings, the current status of NIH spending on the condition and more. In PDF format for easy printing, no reprint permission is required for the use and distribution of this document. If you do not have Adobe Acrobat Reader, it is free and can be downloaded by clicking here.

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Letter Writing

The Basics of Letter Writing – What should your letter say? How should you say it? Who should you send it to? Letter writing tips to make advocacy easier.

Advocacy Links – Not sure who your senators or representatives are? Need the addresses of other public officials, such as the director of the National Institutes of Health? Check our advocacy links.

Perceptions Are Everything – Reprinted from an out-of-print issue of the Fibromyalgia Network Journal.

Written Testimony - Sample the written testimony submitted to Congress in 1998.

Public Witness Testimony – The House selects organizations to speak before the Labor, Health and Human Services subcommittee by using a lottery. In 1998, Fibromyalgia Network was fortunate to have been selected, and even more fortunate to sponsor Ronald C Kramis, Ph.D., to speak on behalf of fibromyalgia patients. Although this occurred several years ago, the information in his testimony is still valid!

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