2014 NFMCPA Achievements
As the year draws to a close, we gratefully look back on NFMCPA 2014 accomplishments as we worked on your behalf and for millions of people who suffer with fibromyalgia and other chronic pain conditions.
When you donate to the National Fibromyalgia & Chronic Pain Association you truly give “where it counts” for people with these conditions. We focus on advocacy, education, research and support. Free resources are provided for our constituents’ use, including the digital Fibromyalgia & Chronic Pain LIFE magazine and the Advocate Voice Newsletter as well as membership in an organization that specializes in these conditions. We need your help to continue our work and offering these valuable resources to people who need them. Together we make a difference!
We think you'd like to know about some of the NFMCPA’s 2014 accomplishments that were made possible by public contributions:
- NFMCPA/OHSU Prevalent Fibromyalgia Symptoms Other than Pain and Successful Treatments Survey results published for the public on the NFMCPA website, the Advocate Voice Newsletter, and submitted as testimony to the FDA for its historical FDA Fibromyalgia Public Patient Meeting in March. In-depth result reports written by collaborator Dr. Robert Bennett (Oregon Health & Sciences University) from 2,187 patient responses. For more info: FM Symptoms Other than Pain Part 1 & FM Symptoms Other than Pain Part 2
- NMCPA Access to Pain Medications Survey results published in the April edition of Practical Pain Management Journal from 6,000+ patient responses. Please click here for more info.
- NFMCPA Marijuana and Cannabis Survey results published in the January Advocate Voice Newsletter show that many people with fibromyalgia benefit from using this drug. The NFMCPA is advocating for research to determine its safe and effective for pain and sleep problems. Please click here for more info.
- FDA Fibromyalgia Public Patient Meeting testimony and representation of fibromyalgia community by Jan Chambers, President and Rae Marie Gleason, Medical Education & Research Director
- NIAMS meeting to advocate for FM and chronic pain research with Dr. Stephen Katz, Director of the National Institutes of Arthritis, Musculoskeletal and Skin diseases at his NIH office in Bethesda, Maryland
- Oregon Above the Line - successful advocacy to have fibromyalgia recognized by Oregon Medicaid (Oregon Health Authority)
- Leaders Against Pain Scholarship Training Program in Salt Lake City at the University of Utah Conference Center for 30 new national patient advocates and support/education group leaders. For more info: leadersagainstpain.net
- NFMCPA Facebook Page reached more than 100,000 fans and more than 1 million impressions of NFMCPA posts. (facebook.com/nfmcpa)
- State Fibromyalgia & Chronic Pain Network Facebook Pages created for people to communicate and be aware of fibromyalgia and chronic pain issues in their own communities and states. This is a step toward more advocacy in each state at legislative hearings and meetings by informed patient advocates. (Example: Florida Fibromyalgia & Chronic Pain Network)
- NFMCPA & Pain Pathways Fibromyalgia Facebook Chat with Dana Rutledge, PhD that reached a large audience of people with questions and who wanted to learn more about fibromyalgia.
- NFMPCA & Neuropathic Association Facebook Chat featuring Dr. Frank Rice about his work in small fiber neuropathy found in skin biopsies of the palms of hands of fibromyalgia patients.
- NFMCPA hosted the September Pain Awareness Month Twitter Chat #painchat
- NFMCPA Fibromyalgia MonthlyTwitter Chats launched with holiday tips for living better with FM and chronic pain and in connection with the #GivingTuesday campaign
- NFMCPA May 12th National Fibromyalgia Awareness Day free kits again sent out to support local event development and media exposure. For more info please see bit.ly/2014FMAwareness
- Sharecare named NFMCPA as their fibromyalgia & chronic pain expert organization. Hundreds of questions and answers are available at bit.ly/NFMCPASharecare
- NFMCPA launched new program: Fibromyalgia Research Week with three BlogTalk Radio chats, featuring:
- Dr. Kim Dupree Jones (Oregon Health & Science Center) on light sensitivity
- Bruce Gillis, MD reporting his FM/a diagnostic test research
- Dan Claw, MD (University of Michigan) with an update on his team’s research findings in fibromyalgia and chronic pain (bit.ly/FMResearchWeek)
Jan Chambers, president and founder of the NFMCPA, championed people with fibromyalgia and chronic pain throughout the year:
- Speaker at the American Medical Association Meeting about suicidal ideation and the importance of a positive doctor-patient relationship
- Served on several federal panels on opioid medications, addiction, and patient access to pain care
- Testified to the U.S. Senate H.E.L.P. Committee Prescription Drug Abuse Working Group about lack of effective and affordable pain treatments as well as chronic pain patient suicidal ideation
- Advocated to the U.S. FDA and the DEA to protect patient rights to prescription pain medications and to assess the unintended consequences of the hydrocodone drug rescheduling from Schedule III to Schedule II
- Patient representative panel member at the three-day TMJ Association's 7th Scientific Meeting
- Helped charter and organize CPATF (Consumer Pain Advocacy Task Force), a 14-patient advocacy organizations to collectively advocate at the federal level for the implementation of the National Pain Strategy