BUSY SUMMER for the NFMCPA

by Rae Gleason
The dog days of summer are well underway, and more hot days loom ahead. Gardens are growing and tomatoes, cucumbers, corn, green beans, cantaloupe and watermelon are being harvested. Such is the garden my husband planted and tends. Of course, I get the fun of cooking everything and trying new recipes. Some taste good ,and at other times the vegetables would be better eaten straight from the garden.

Summer is also a time of transition and offers opportunities for business and research travel (not as much fun as vacations, and certainly not as relaxing); but so very important to the ongoing perplexities of fibromyalgia and chronic pain. Summer might be a break for most people, but not for Jan Chambers, President of the NFMCPA, who traveled to Washington, D.C. where she was invited by the Society of Women's Health Research (SWHR) to speak at their annual meeting, held July 18-19. She was asked to discuss the chronic pain patient's perspective and the idiosyncrasies of living successfully 24/7 with a life altering illness.

The Society for Women's Health Research (SWHR) is the thought leader in research on biological gender differences in disease and is dedicated to transforming women's health through science, advocacy, and education. Founded in 1990 by a group of physicians, medical researchers and health advocates, SWHR brings attention to the myriad of diseases and conditions that affect women uniquely. Due to SWHR's efforts, women are now routinely included in most major medical research studies, and scientists are beginning to consider biological sex as a variable in their research.

Today SWHR advocates for greater public and private funding for women's health research and the study of biological differences that:

• Affect the prevention, diagnosis and treatment of disease;
• Encourage the appropriate inclusion of women and minorities in medical research studies;
• Promote the analysis of research data for biological and ethnic differences; andBUSY SUMMER for the NFMCPAInform women, health care providers, and policy makers about contemporary women's health issues through media outreach, congressional briefings, public education campaigns, conferences and special events.

This year's meeting, "What a Difference an X Makes: The State of Women's Research" had an impressive program including international speakers, chosen primarily from the medical and research fields, and included patient advocacy. Jan's presentation covered her days after first developing FM (she didn't know it had a name then) and the multitude of changes caused by pain, fatigue and "fibro fog." She talked about her journey from being bedridden to becoming a Leader Against Pain to founding the National Fibromyalgia & Chronic Pain Association and all of the trials, tribulations and triumphs along the way. Her frank, no holds barred presentation helped to educate hundreds of people involved in women's research to better understand the perplexities of living with an invisible chronic pain condition that still lacks research funding and scientific interest. Since fibromyalgia is predominately a women's illness (80% compared to men), this was a perfect conference to educate people about research and medical treatment discrepancies in this disorder. Visit SWHR website for a full meeting report. (http://www.womenshealthresearch.org/site/PageServer)

During her time in Washington, D.C., Jan also represented the fibromyalgia community in several advocacy meetings including time spent with people at Congressional offices, health advocates and other people involved in pain education, research and awareness. Jan participated in a think-tank meeting with colleagues in Silver Springs, Maryland, August 12-13. The meeting facilitated a broad scientific discussion about optimal ways to generate evidence to help inform the safe use of extended-release and long-acting opioid analgesics for the treatment of chronic pain. It was hosted by Clinical Trials Transformation Initiative (CTTI), a public-private partnership aimed at improving the quality and efficiency of clinical trials. Under a cooperative agreement with the FDA, Duke University serves as the host institution for CTTI.

August 15-18 brought the International MYOPAIN meeting to Seattle where the NFMCPA hosted an exhibit table. The International MYOPAIN Society (IMS) is a nonprofit, international, interdisciplinary medical organization for research scientists, physicians, other health care professionals, individuals in training toward a health-related career, institutions, foundations, and commercial companies interested in exchanging ideas, conducting research, or learning more about soft tissue pain syndromes like myofascial pain syndrome and fibromyalgia. This organization was created in the early 1990s by a handful of international fibromyalgia and myofascial pain researchers, including Dr. Robert M. Bennett and Dr. I. Jon Russell. At that time fibromyalgia researchers did not have an association where they could share their research information or a peer reviewed journal in which to publish their papers. It was frustrating to submit work on growth hormone deficiency and neurotransmitter problems (as well as central nervous system scientific discoveries) to established professional medical journals just to have them refused because the reviewers didn't understand the scientific findings correlation to fibromyalgia. More MYOPAIN information will be included in upcoming issues of the Fibromyalgia & Chronic Pain LIFE magazine and the NFMCPA's Advocate Newsletter.

September Pain Awareness Month is just around the corner, and activities are being planned to help bring more awareness about people with fibromyalgia and overlapping chronic pain conditions. Watch for announcements regarding September events and how you can participate.

September 4-7 brings the PAINWeek meeting to Las Vegas where the NFMCPA is a partner hosting an exhibit booth with both fibromyalgia and chronic pain handout materials. PAINWeek was created to offer pain education to healthcare providers unfamiliar with chronic pain conditions and their treatments. Many of the world's leading pain doctors, researchers and healthcare advocates will be at PAINWeek, and the NFMCPA will be there to both educate conference attenders and represent the patient community.