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“Your research reports provide a fascinating look at the cutting edge of a syndrome that many doctors do not believe exists. Also, I sent a Membership to a friend who has FMS; she also loves your publication."
Current Member


Our Philosophy

Philosophy | History | Advocacy

Fibromyalgia Network's Philosophy

Our mission is simple: we aim to educate and assist patients with ad-free, patient-focused information that they can put to use today. We strive to make each issue of the Fibromyalgia Network Journal as accurate as possible, basing articles on published scientific findings, with many of them reviewed and edited by the experts for accuracy.

As for our privacy policy, it is simple as well: we do not share information about Members with anyone. We do not subject Members to ads that provide false claims or trivialize how you feel. Over the years, Fibromyalgia Network has been repeatedly approached by people asking to advertise in our Journal or purchase our patient mailing list, and the answer has always been—and always will be—NO! There are no ads in our quarterly publication, our eNews Alert, or on our website. Advertisements may be commonplace in the publishing world, but Fibromyalgia Network is not solely a publication.

Fibromyalgia Network is an organization that attends medical conferences, interviews the experts, and sifts through the details in the medical journals for our members—so that we can deliver up-to-date objective reporting and information that you won't find anywhere else. Our major goals for enriching the lives of fibromyalgia and chronic fatigue patients include providing education, improving awareness of syndromes through May 12 activities and dissemination of our brochures, and promoting research (e.g., in-kind services to AFSA).

The benefits of Membership cost only $28/year. Why charge at all? Everything worth having costs money to produce, and since we do not include advertising, our organization is sustained only through Membership fees. We understand that it is not easy dealing with fibromyalgia, so we offer our Members as many services as possible while keeping the price affordable.

We are often told that the information produced by Fibromyalgia Network is extremely helpful in attaining a higher quality of life. Fibromyalgia Network prides itself on providing news that can be put to use today and cannot be found anywhere else.

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Brief History

Fibromyalgia Network has been keeping patients informed about their condition since 1988. Our first quarterly Fibromyalgia Network newsletter was sent to the members of five support groups in southern California by Kristin Thorson (who remains the editor today). It began as a volunteer effort to relay the content of speaker-event meetings, particularly due to the paucity of information available on fibromyalgia syndrome (FMS). The publication was only 8 pages long, with a circulation of 300 patients and healthcare providers.

A year later, over a dozen support groups in California were linked by the Fibromyalgia Network newsletter, and due to a thirst for information on fibromyalgia, the publication was expanded to 12 pages and its circulation reached almost 1,000.

During the early 1990s, fibromyalgia and chronic fatigue syndrome (CFS) became popular topics in women's magazines. People around the world were identifying with magazine reports of a new "mystery" condition whose hallmark symptoms included body-wide pain, sleepless nights, and daytime exhaustion. As more articles appeared in the magazines—many of them prepared with Kristin's assistance—Fibromyalgia Network installed a toll-free line and increased its staff to answer the hundreds of calls it received every day. Even as menu-driven customer service was gaining popularity, Fibromyalgia Network ensured that patient callers had knowledgeable and caring people to talk to ... a philosophy that is still in place today.

Beginning in 1991, Fibromyalgia Network started hosting informational booths at major medical conferences to spread the word about the legitimacy of fibromyalgia and chronic fatigue syndrome to people in the health care field, most of whom were physicians. The first booth was at the annual meeting of the American College of Rheumatology, where the majority of rheumatologists passed by and rolled their eyes in disbelief. During the next seven years, Fibromyalgia Network sponsored and hosted informational booths at the annual meetings for rheumatologists, physiatrists (physical medicine and rehabilitation specialists), and family physicians. Eventually, Fibromyalgia Network recruited several hundred knowledgeable physicians for its health care referral lists so that patients would have access to a medical community that could help them.

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Advocacy Efforts

Although diagnostic criteria for fibromyalgia syndrome was published in 1990, the growth of research on this condition was stunted by two major factors: The National Institutes of Health (NIH) refused to fund any studies on fibromyalgia, and investigators did not have a private research-funding charity to help them jump-start projects in the field.

In 1993, Fibromyalgia Network launched a nationwide campaign to lobby both the U.S. House of Representatives and the Senate to enact language that would encourage the NIH to fund research on fibromyalgia. This began when Fibromyalgia Network sponsored renowned researcher I. Jon Russell, M.D., Ph.D., of the University of Texas at San Antonio, to speak before the House and Senate subcommittees that held the NIH purse strings. The first NIH action taken in response to new language passed by Congress was to sponsor a two-day research seminar on fibromyalgia syndrome that laid the groundwork for the funding of studies on this condition.

Fibromyalgia Network vigorously pursued its lobbying efforts for the next five years, getting Congressional language passed each year to promote fibromyalgia and chronic fatigue syndrome research. After five years of working with patients across the country to lobby Congress, the NIH finally began to award several million dollars per year in research grants and created a special committee to review research proposals for fibromyalgia (see our Advocacy page for more details).

As lobbying the NIH began to show promise, Kristin founded the American Fibromyalgia Syndrome Association (AFSA) in 1994, a research-funding charity that provides seed money for small-scale projects on fibromyalgia and chronic fatigue syndrome. To date, over one million dollars has been raised and awarded to research, with over 90% of the funds going directly to the principal investigators. Although AFSA and Fibromyalgia Network are separate entities, AFSA is able to operate without the burden of many overhead costs due to the generous in-kind services provided by Fibromyalgia Network. In other words, Fibromyalgia Network houses AFSA so that the money raised goes toward research—rather than rent, utilities, computers, etc.

The staff of Fibromyalgia Network voluntarily answers AFSA's phone, and Kristin works as an AFSA volunteer to coordinate the grading and awarding of research grants. Fibromyalgia Network receives no financial compensation, but is gratified to know that the quality research funded by AFSA has already led to a better understanding of fibromyalgia and chronic fatigue syndrome, which in turn, will soon produce more effective therapies for patients.

In 1998, Fibromyalgia Network initiated a nationwide May 12 Awareness Day campaign to improve the public's recognition and understanding of fibromyalgia and chronic fatigue syndrome. Although most patients are quite ill, the symptoms are not visible. The purpose of awareness activities is to bring to light the suffering of millions of men, women, and children, and to educate people in the community about the serious nature of these related conditions. During the first five months of each year, Fibromyalgia Network dispenses several hundred posters and pins, and thousands of bookmarks ... all for the cost of postage. It's Fibromyalgia Network's pledge to work toward minimizing the number of patients that suffer in silence because no one understands their symptoms (see May 12 for more details).

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Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751 (800) 853-2929.
This site is provided for informational purposes only. Patients should always consult their physician for medical advice and treatment.